Whole body muscle weakness/atrophy on right side

Well, I drank heavily for 12 years. At the least it was about a pint the first four years two-three x weekly. After the first four years I went a little above a pint three-four days a week. During two years I was drinking four-five days a week a little over a pint. I went through a summer of doing a fifth a day when I drank three-four x daily. I also did cocaine a few times. I smoked marijuana when with peers who were into that (I did it 'cause that's how it is when you're drinking). I have blacked out from drinking more times than you can count. The usual s**t. I have had my kidneys/liver checked during the time span of drinking hard to make sure they were functioning properly and they never were in danger according to the results. I've had my blood checked twice a year. The usual routine testing. I have had many test in relation to what is going on now to no success in identifying the problem. My heart did start racing quickly while lying down three years ago and that went on for four days (only when I lied down to go to sleep during those days). After that my heart has been pacing quicker than it should. My heart has been tested/pictured twice after and just recently - normal results and they say it's healthy. My lungs are also compromised - I have to breathe more/harder for little things. It's worse while I lie down too. The usual symptoms that everyone has in this thread. It's a bad sign that nobody has came back with any good news - or news at all.

No. I just looked it up. A lot of these neurological diseases seem to have overlapping symptoms though.

Do your ears ring like mine? Left is worse than right; however, they both ring [constantly].

That's what I'm noticing as well. So many of the same symptoms! From what I can tell it looks like so many things can be negated by blood tests. I have made a follow up with my primary care for tomorrow to see what she wants to do next. I'm starting to feel like there's no options left or ones that will be figured out in time. I can understand how people with disease would contemplate suicide and wonder if it's better than what's to come.

I have done a few drugs. Dabbled with meth a little mostly snorted, smoked a few times. Weed, yep and still do. Nothing I can say was a horrible addiction other than alcohol.

I work around machines and so my hearing isn't the best. I don't smell well either and seem to always have plenty of mucus. I've had a productive cough for about 3 months (untreated).

I can't smell well either. Well, a lot of people who have been in this thread gave great historical information about themselves. Some say they've had it for a long time like you, while others have said the opposite. I for instance noticed in late 2017 [December]. So, it's been around five years for me. I hope to find an answer just as you. I'm not in any pain [yet] or anything. I am however becoming increasingly more stiff, losing more strength and muscular endurance and who knows what else. Muscles and bones work together - therefore my bones are lacking as well. I won't stop there though, as I said previously; my genitals are suffering too. I used to have large genitals and my penis would become hard as a diamond. One morning in 2019 of March I woke up without a morning erection and my genitals have been deflating and losing operation since. I notice I have less sperm and when I do organism the sperm doesn't come out as it should (weak explosion). This goes to show that this problem is more than just muscular, unless it takes muscles to grow sperm and to release it. Either way, I had to stop sexual relations around that time because of this problem. It's all connected. I have been depressed since 2020 when I realized this problem wasn't going to go away. I just mope around now and get lost in entertainment to take my mind off of things. I'm worried that those who posted here before and have not returned have perished. I say this because it's around 25-30 people in this topic and only one or two people have returned to give an update. And I know everyone has been working hard to get diagnosed, they would return to give an update on that too.

Do you live in the U.S.? If so, what state?

The toughness in my arms started in the fall of last year. January it got bad and I started looking for other ways to fix myself. Working out, eating right, all that. I can't really work out anymore either but know that's the only way to keep the muscle mass. My breast is now noticeably smaller on my right side. I've noticed the people not coming back to respond. I believe whole heartedly that this is fatal.

I do, I was born and raised in New Mexixo and live in Utah. You?

I lifted weights x three a week and ran x two a week back in Spring/Summer of '20. I had started weak and with low endurance; eventually gaining some strength and endurance. It just wasn't the same as when I exercised just two years before that and it was awkward because of the imbalance of my left side versus my right. I was still shrinking all while on my six month exercise adventure so I just gave up exercising after that. I used to be at the pinnacle of strength/speed/endurance with ease. That is no longer the case. I hope you are wrong about it being fatal - though it would seem surprising it isn't at this point!

I've had the issue with the imbalance as well. Have they been able to not only see but measure some type of damage to your body throughout this? I had an MRI from 2016 before I noticed much of the atrophy. I'm curious about that MRI and the structure of my body in comparison to what it is now and an explanation. I don't want to think about it being fatal but with everything shutting down the way it is, I don't see how it couldn't be. These headaches are getting worse. I started dating someone a couple months ago but as I feel this is moving quickly, I'm about to cut that off and remain by myself as I go through it all.

I had two brain MRI. summer of 2020 and 2021. Both were after I started having my problems. They both came back normal (according to the neurologist). I don't really have headaches though. I used to when I was younger; but, it's been around 15 years since I've had one. I do feel the left side of my eyebrow bone area and top of the left side of my head right now. It means it's decaying further. My right side has shrunk too; but, it's still solid feeling and not as bad. As I stated before, all you have to do is look at the top of my hand when I rest my palm flat on a surface to see the difference. Are your knuckles the same? When I say "knuckles," I mean the area in the middle of the start of the finger and the finger tip.

So far my knuckles seem to appear normal. I do have issues with flexibility in my wrist.

It's possible we have a different condition then. Does your face sink in more on one side than the other? When people lack sleep they get puffiness under their eyes - regardless of your sleep schedule, is the part below your eyes sunken in instead?

I also have a drooping effect now. For instance, the bottom of my chin slightly left of the middle has drooped since 2019. I have droop-eyelids (even though I am not Mongoloid). The skin above my butt-crack droops more. This just means it's the whole body doing this. I'm not old enough for this to be normal. Nothing about this is normal. Which is funny when doctors try and gaslight (I hate using this term since every internet scholar uses it now). I also have less hair on the left side of my body compared to the right; when before, it was the opposite.

I'm beginning to think that some of what I have been dealing with in fact was because of my rib damage and the atrophy that is happening is just beginning. I'm starting to lose weight without trying. I noticed that my face was changing because when I washed my face like I have for all these years, I kept getting soap in my eye. Took me awhile to put that together. Then I noticed my glasses/sunglasses didn't sit on one side like it used to. This doctor is brand new and the last medical records I had were from 2016-18. Bless her she stared right at me today and said I look symmetrical to her. I pointed out to her where in fact that isn't the case. She didn't have the fax from the EMG/NCS testing. I have 3 MRI's scheduled tomorrow. She's thrown out Myopathy. They've thrown out MS, stiff person syndrome and let's not forget crazy. If the MRI's don't show anything unusual then she'll get me to another multi level specialist in her office. He'll get to take a gander and hopefully have an answer. If he doesn't, he has gotten people into the Mayo Clinic before and he's my better option.

My muscles in my legs ache,I have lots of back issues, none again is believed to be causing what is going on neurologically. My left leg has been damaged for awhile but the right of following suit and in a way that isn't explainable. Also mild carpal tunnel was noted but doesn't explain the sensory or nerve issues with my hand or arm. I also have a herniated disc in my back and neck. She could pinpoint where some of that damage was but not able to explain how or why nothing was giving a clinical presentation that she could put her finger on.

Doctors always say they don't see anything abnormal. Sometimes you have to show them old licenses and point out the obvious and it may succeed in persuasion. It matters little what they see though, they should be aiming their diagnosis based on what they are told.

Have you ever passed out from something? I passed out before and was grinding my teeth all while I was unconscious, so much that my head muscles which are flexed while chewing grew greatly. It's possible that may have triggered this. I could say that about so many things though. I doubt your normal damage is the cause of this. This seems to be inflammation or something in the brain. I asked about a cancerous tumor being the culprit and have been shot down because they say it would affect the totality of the body the same [unless it was a brain tumor which has been ruled out].

I have thought about different types of cancer because of my alcohol and history of NSAID use because of my back. I have a upper and lower GI scheduled for the end of August. The reason it upper was scheduled is because of the nausea and full feeling without eating. They were thinking ulcers. Ulcers don't cause all of this but nobody has the knowledge where I'm being seen to run everything that's going on collectively and make a decision. I'm showing signs of 3 or 4 different things but nothing is conclusive. I really wanted to ask how hard would it be to run a couple of blood tests that I've suggested but, you already know where that goes. I'm also horrible at advocating for myself. I have passed out multiple times throughout my life. As a child I used to get bad nosebleeds when I got hot. I've had the echocardiogram with bubbles and it shows that my heart has trace regurgitation on 2 valves and mild asymmetric septal hypertrophy. Heart disease can cause all of the symptoms I feel like I'm having. My primary care physician said it's not the case. The muscle tension I don't know. I tried shrooms for the first time Friday night. I had no "high" from it. I did however have horrible muscle tightening on my right arm mostly but some in my neck and head. I was scared witless. I honestly thought I was having a stroke.

I get light headed quite often. I have my medical card so I'm always smoking cannabis. There are times when I'm holding in the hit and I feel like I'm going to pass out. Other times when I hold in the hit, I'll get a sharp pain shooting down my leg. I also have woken up because I was biting my own tongue so hard that it hurt. I have ground my teeth a lot, not so much the last few years.

Also, I have in the last couple of months felt kind of like I'm having restless leg syndrome but my whole body feels like that on occasion. I have gotten that sensation before when I've taken benadryl or something like Tylenol PM.

What is upper and lower GI mean? I had a colonoscopy six months back and it was normal. A few weeks after my constipation became worse (again), once it gets worse it never returns back to a better function. I am forced to use laxatives to go these days. I feel they should be able to see atrophy in my tests, they said nothing about it. I can feel atrophy in my abdomen, intestinal tract and all the above. Ulcers, I know I drank an infinite amount too much and I never had the feeling of such. I suppose it's possible that one's body can reject the symptoms in a way to ease the brain. My heart started beating a constant quicker than it had previously like a switch occurred. The thing is I did the most cocaine I ever had done three weeks prior - I had felt normal after that. I went to the bar one night after the three weeks and went to sleep. The next day is when my heart began pacing the fastest it ever has while I lied down. It was okay when I sat up; but, sped up drastically while lying down. That was the pinnacle of its speed though. The next few days when I lied down it was faster too; just, not as fast as it was that initial night. This was the same days that I lost my morning erections and my genitals started depleting in size and operation. They are depleted in size now (used to have a penis erection over seven inches and thick, now it's barely above six inches and far thinner, my testicles are also smaller and the left is ridden with more wrinkles than the right in an abnormal way). Someone in this thread stated how it felt as if someone was sucking life out of one side of our body and that is how it feels/looks. I did however get a stress test after this and it came back normal. I had just returned two months ago to get an additional stress test with radiation imagery and the heart examiner claimed it all checked back as "healthy and normal. No sign of heart disease." If that is the case - why is my heart still faster than it had previously been before the episode in 2019? I feel heart disease may be a possibility - or the heart beating faster is simply a symptom of what is going on. For me, this problem affects every function of my body and every square inch. You said you did mushrooms, I've done those a few times. Very long ago. I had them thrice (once in the year of 2011, once in the year 2012, and once in the year 2013). I threw up the last time because I ingested too many at once and anxiety rushed me. As I said though, my normalcy ended at late 2017 or early 2018. It's possible it began before this and I wasn't aware though. I don't recall any muscle tightening with what is going on with me. I just wake up and can feel more emptiness/hollowness on my left side of body. As I stated previously - it happens on my right side too, it just doesn't affect it as much and lacks the empty/hollow feeling my left does. I asked to get my pancreas checked for cancer. As I hear it's hard to detect and usually too late to recover when it happens. My G.I. doctor told me she would add some test for my blood that may express if my pancreas is in trouble, I am getting my thyroid checked soon via blood test as I take thyroid medication. I keep getting more tired as of late. I used to be the most energetic person around.

I used to smoke marijuana too. I never bought it per se; but, I'd smoke it socially if I was around someone that did. This occured for ten years and only recently stopped (due to my own hibernation via fear of what is happening to me). I was getting issues at the end of my smoking timeline where I would have to cough a lot to clear my throat. I've always had throat problems (esophagitis and acid reflux). It's as if my throat was atrophied as well and I had to cough to clear it or whatever. Lately I've had food stuck in my throat as well, food that should never be stuck (eggs for instance). That is just more of the same of a degrading body. I also ground my teeth when I was younger and still may in my sleep. My teeth are in poor shape from the grinding - the dentist says my gums are fine. I do have a problem on the top-left portion of my gum where it becomes inflamed often and a "gap" is there while it is inflamed so that food is able to be lodged inside of it easily. Of course it's the left side, my problem side.

I never had issues with restless leg syndrome before, in the past year I have gotten the sensation a few times though.

Wanted to add I used to work a government job. They required shots, "vaccines" and other such. It's possible I was poisoned by them. It's no secret that people are used as demonstrations and who better than their own employee(s)? Not saying this is a high probability, just a possibility. In addition to what I previously typed, there have been two nights a few years back when I went to the bar, came home, woke up and noticed an elevated piece of my inner arm where an I.V. is placed. Typically the look of an arm in which had an I.V. in for blood work etc. I clearly remember never being touched or tampered with in any way, let alone a needle being pushed into my skin. This would sound like paranoia to the less thinking; however, it is true and worthy of note.

Last one from me (for now). Has your tongue ever been blue? A few years ago around the time of this starting to happen I woke up with a blue tongue. Meaning my oxygen levels were f****d up. This was after drinking of course. It happened twice. I estimate it was in 2019 when things started ramping up in regards to my current depleted health status. I had gotten Covid-19 a few months back (first time), I'm not vaccinated and my oxygen levels were fine then (dropped to its lowest at 93 but was around 95 most of the time). It's just something to add because all information is important. Usually I'm against parading my personal information/diary; in this case, I don't care who reveals what I'm typing here because I'm desperate like everyone else who has been here (unless they were actors/actresses).

I was hospitalized with pancreatitis back in 2011. They actually thought it was a tumor but somehow it changed from one day to the next. I was in there for 3 days. The GI checks all of your throat, stomach, pancreas and I believe everything that the lower GI misses. I've experienced the irregular heartbeat. I've had lots of episodes where I questioned if I was having a heart attack. My dad was just diagnosed with CCL. His mother has another type of chronic leukemia as well AND my mothers brother died in 69 from a form of leukemia as well. My dad has some of the same issues with his heart and breathing. Spent weeks in the hospital and they ran tons of tests. His white count was high but didn't know why. After 2 years is finally manifested. When I mentioned that history she said it was petty deep but my white blood count was normal when I had that testing done.

Yeah, that sounds like a lot of hurdles to jump in order to diagnose. The best part of this issue with me is that I've been trying to get it identified/diagnosed for three years. These doctors obviously don't give a f**k. My primary physician I've been seeing for 20 years and he acts like he sees nothing. Useless bum. I thought he was okay until I had real problems. Well, good luck to your efforts in getting diagnosed. I'm still trying and will 'til I fall for good. I'll obviously post them here if they ever come. I may be like the others in here who just die without knowing. Then when they do an autopsy on me they'll say it was from heart failure and that'll be the end of it. Even though this issue is far more complex than a simple summary of death in which that is.

Ever heard of: Rhabdomyosarcoma?

I think this could be a possibility. If so, we're definitely doomed!

I haven't heard of that before but did read it. It's concerning. I agree with you that one day it'll be over and they'll just pass it off just like they did with so many deaths during covid. Once we're gone, who cares right? My eyes, I keep forgetting to address that. I don't notice a droop yet on my eyes but definitely a difference with the puffiness. I swear when I start talking about symptoms my doctors just tune it out. In their defense, I'm just starting this and they're all new doctors.

Have you had a very stressful life? Childhood? Adulthood?

Medically being pimped. These people know what we have but want to ring us out for money. There is no way that a unique issue as ours isn't obvious when millions go through the medical industry every year.

I have never been one to stress a lot, so I can't say that. And I notice when I awake my lips are really dry, throat is dry/hurts (even though I take antacids and have no problems with it during the day) and I do have puffy feeling around my eyes. Unlike normal people whose eyes puff out underneath, mine sink in.

My left temporalis muscle has been feeling the same feeling i always feel when a body part decays more. It's a strange sensation that is hard to describe - it only feels as if it's a bad feeling rather than a good one.

Do you feel like maybe it could be your tendons or ligaments as well? My right shoulder is so pulled in and twisted. I feel deformed but other people in my life don't notice it until I point out it, for that I'm grateful.

I had this crazy theory once that it could possibly be a virus living in part of my brain causing this. I haven't had an antibiotic since t his started and I used to work in a "filthy" environment.

I've also wondered about a virus or something like that because of where I've lived. About 9 years ago I remember having so much drainage down the back of my throat. Possibly mucous, it was uncontrollable. I do have a ridiculous amount of phlegm also.

You had mentioned the temporalis muscle. I finally looked that up (sorry) and yes, I feel that it's smaller on my right side than my left as well as my eye socket. Nobody can see it just glancing though.

I think I understand the empty feeling you're talking about. Today my leg feels like it's barely there. Almost a totally numb feeling but I know it's there and blood is flowing to it. I know these are the cases I should go in to urgent care. I'm so tired of everyone looking at me like I'm a nutcase. I was put on zoloft . Now when that shows up they immediately think I've got mental problems. I'm done taking that. I don't take any daily medication aside from oxycodone 5 mg.

Well, typically (I've been looking since this started happening) people's right temporalis muscle is larger than their left - and their left cheek area is bigger than their right. I used to be this way...kind of. I had passed out due to an incident with chemical exposure where I used to work and I was grinding my teeth during the incident. After that I noticed my head muscles were huge! I had gotten Botox in the right one to shrink it to match the left. Wonder if Botox triggered all of this! Either way, my left is far smaller than my right and the left side of me is the "affected" side. Even though the other side is affected too, just less so.

Haha, yeah if you're on Zoloft you aren't taken seriously. I've never taken anti depressants and other drugs like it because of that. I've never had a depression issues 'til recently when I realized my problem was so "unique" and wasn't going away. And in the very minimum won't be diagnosed! Once they see you're on Zoloft you lose all credibility LOL. Not to me though, in the medical world and to the average person (in the U.S.) yes. A few times last winter when I was shoveling snow my left leg felt like it was going to break off because of this problem. My muscles get tired out easily now. Especially my left side. Felt like my left leg was really cutting loose from my hips.

When I look at people on T.V. with M.S., ALS, previously had strokes, etc. I don't see any physical indication of how I look. Whatever we have must be different. As I said before, I went six months without drinking in Spring/Summer 2020 - the very next day I drank my entire right side shrank (bottom of feet to top of head). I fear I have triggered something with my heavy alcohol drinking because they say heavy drinking can cause neurological problems. I just thought my liver/kidneys would be in the danger level before that thing happened. I had always gotten my liver/kidneys checked every year to make sure I would stop before they went too low in health. The closest I got was my liver was close to being in the "abnormal" range on the blood test. I feel this may be an auto immune problem. Something to do with inflammation. I just wish it could be reversed. I haven't drank in six months again and I'm not going to go back. I just want some recognition for what this is - and finally, healing if possible. As mentioned also: it's a bad sign that only a couple people from this thread that is about five years old have returned. The other ones are probably where we'll be soon.

I have felt for almost 2 years that my left leg was pretty much like a peg leg. The way it's caused me to walk. People who don't know me don't realize the difference, they think I just got swag, when indeed my reflexes are dwindling in my feet. To be looked at like I'm crazy, the feeling of despair when I'm waiting for test results just to find out that it still has no answer is getting tiring.

I also drank heavily without any type of medical care for nearly a long as you. I drank a couple of wine coolers over the last couple days. Didn't notice any difference. I think it's autoimmune as well as inflammatory. I want to believe everything is going to be ok but my body is getting worse daily. The longer without an answer, I feel is fate.

One day later and I'm feeling worse. My muscles are now starting to get tight in my right hip area that I can tell. When I do a glute stretch, it's almost as if I have to force my legs down to square them for the stretch. Does that make sense?

I don't follow. I don't really exercise anymore because I feel it's a futile effort. I am thinking of trying again just because it may delay my decay. The worst part is the unevenness of the body. I do wake up stiff and less mobile than one naturally should be. It's been getting worse as you experience. I wish they had a drug that could prevent this from getting worse and reverse it. I know they can do a lot of things with stem cells (which cost a lot of money, at this point money means little). If the reason is our brain then we may be out of luck. Some around me think I'm foolish for going to so many doctor appointments; but, I have no choice. It's not as if I'll live long enough to use the money I'm wasting on them. I feel I'm being medically pimped too - after three years and no diagnosis is a huge sign. I have no choice though. In my last desperation I may travel to Russia or China - seeing as their doctors are more than likely superior to those in the U.S.

When you sit down and put your leg up by lifting your ankle and resting it on your thigh. Does your leg (knee) still fall naturally in a down position? Mine doesn't, I have to press them down.

I'm beginning to feel this is a waste of time. Looking for answers or asking a doctor to see me on a personal level so I'm more than just a time slot have proved futile. Hoping to hear from my doctor about her ideas from the EMG and NCS along with fresh MRI's. Hopefully soon! I did message her and asked if the MRI is inconclusive, would she be willing to look at ALS.

I follow the sit down part, I follow the put my leg up part by lifting my ankle, I don't get the "resting it on your thigh" part - how do you do that by simply lifting your foot/ankle?

And it is probably a waste of time since nobody else in this thread ever received answers. It's slightly offensive they never came back before they died to give more updates though.

I don't think this is ALS or Multiple Sclerosis. When you look at them they don't have sunken in faces and other parts of their body. Something is "deleting" the substance of us that causes these effects. I don't think it has anything to do with nerves anymore.

It almost feels like the fat is diminishing along with the muscles and tendons. If you Google how to do a right glute stretch and you'll see what I mean. It's like the inner and outer thigh muscle is tight and won't release enough for my leg to lay naturally flat (kind of cross legged).

I'm losing the sensation in my arms and legs quickly. Different places feel numb to the touch.

I did look up that disease called Pompe Disease and it's similar to a lot of things I'm feeling. So does skin cancer. Not sure what's happening or why but I'm losing hope and that's a terrible place to be.

I'm definitely not losing fat! When it comes to sensation; I wouldn't say I'm numb, but I do agree there may be less sensitivity in a way. My left leg has been having the same sensation has it was in summer of 2019 before my health started collapsing rapidly.

Some places the sensitivity is almost nonexistent. Gives it the feeling of being numb but I can feel pin pricks.

I was only thinking fat as well because my hips and breasts are starting to shrink fast. In a couple months I'm afraid I'm going to look like a 12 year old boy.

Yeah. I forgot someone else said her breast and buttocks were shrinking. My shrinking is universal within my body - including my internal like throat/digestive system. I can tell when I swallow/attempt to dump waste. As I said before; for almost a year I've been having to depend on Miralax to go. This is a nightmare because there's no urgency to get us diagnosed/fixed. I'm lucky I have 25% body fat or else I'd REALLY look like a skeleton. Your right side is affected; my left, do you feel a difference when you step in relation to one of your feet having more "to it" on the bottom than the other? That's how I've been for a long time. This is something you feel 24/7. People either play dumb or don't realize the significance of our sorrows.

Can you still dream/produce images in your head when thinking of something like an apple or orange? I can't anymore!

Have you ever had a head injury? It's so crazy that when I look at celebrities who have had strokes they don't exhibit the same visual looks that I do. Then I look at celebrities who have had ALS and don't see the same thing either. Same with Multiple Sclerosis. This is a mystery! There are so many things that could've triggered what is going on with me - or possibly this was meant to be regardless of how I have behaved in life. Either way, one fact is that the left side is more affected than the right; however, the right is still affected in a way. The M.R.I. I have gotten in summer of 2020 and summer of 2021 revealed no abnormalities according to the neurologist. They also say brain damage isn't always identifiable in M.R.I. if it is a small amount. Either way, if it's so small why is it affecting me (and others) like this while people who have multiple strokes do not exhibit this? This makes me think that our brains may not be damaged and this is something else. I did once hit my head on a counter back in 2017 (a slight bit before this started) and it wouldn't stop bleeding so I had to go to the E.R. to get it stitched. I wonder if that is what triggered this. I was also partaking in dangerous activities as well. The scar on my head is toward the middle of it (meaning, not too much left or right). I wonder if that is possible in which the scar is mostly on the right side (right side of brain affecting left side of body); but also, on the left side (left side of brain affecting right side of body) a bit too. I could be over-thinking this. It's just crazy how you can't find anything about this on the internet. I don't think it's Parry Romberg syndrome either - however, I could be wrong!

Forgot to add that I cannot vouch for the many times I blacked out at a bar or at someone's place etc. Who knows what occurred during my blackouts.

I rarely dream anymore. I can conjure a mental image when I really think about it but it takes a minute. When I was working out a lot I would have to look at my leg on occasion and wonder why it wasn't doing what I was telling it to.

Got the results back from my MRI. As suspected, I've been referred to another spine and pain specialist. They figure that's part of what's going on with me. I wish! Until I go through all of that diagnosis and treatment they're wanting so I can prove this isn't because of that, I'm on a standstill. Meanwhile I feel the muscles getting tighter around my abdomen and slowly start making it harder to breathe. My muscles are giving out and causing so many other issues with mobility. I get light headed, tremble all of it but it's still nothing. I'm getting fed up fast.

I was getting light headed for a while after I quit drinking about 180 days ago. It had disappeared about two months ago though! And what do you mean leg-muscle tightness? I've never felt that. As with getting my leg to do something - I also have had no issue with that. It's just that it feels disconnected and weaker (all while showing the same signs visually) than my right.

I've had my spine MRI too, they said it was normal. My spine is shifted because the left back muscles are weaker, naturally it will do that. Does your spine curve too?

How about sneezing? Often now, when a sneeze sensation comes up - it goes away before I sneeze. This is a new occurrence as of the past two months.

Sometimes it feels like I can sense the muscles tightening and shrinking.

I have no issues sneezing at all. The left side of my body is following suit on my trunk. My hips and buttocks, my abdomen, both breasts (right worse of course).

I have a 23 year old daughter who has told me that she's felt the same shrinking feeling in her abdomen as I noticed in my late 20's early 30's.

I reached out personally to message someone on this thread and she's still alive, just doesn't have answers and so doesn't post I guess. She's had no diagnosis, no real improvement (just keep moving) and hanging in there.

Still waiting for my blood tests results.

I can feel when an area is shrinking too. A subtle; but, obvious feeling in the area. Once my lips were experiencing tremors when they had shrunk. Who did you contact if I may ask? I messaged a lot of people here and received no response. Guess we're out of luck - seeing as there isn't really any information about this condition on the internet anywhere!

Have you gotten your Angiotensin II hormone checked? It's said that this may cause muscle loss too. I know it's worse on my left side compared to my right - and that my left side used to be larger than my right; but, this may be something to check too.

It was Erin8865 something like that. My memory isn't what it used to be. I clicked on it to see but by the time I got here to write it, I can't remember the exact numbers.

I'm really not sure what all the tested with the blood work. I'm starting to get nervous though as important people are moving in and out of my life. My 2 children at home are now with older siblings which happened so suddenly its shocking. I have an urge to get my house in order and to get my loose ends tied up. I don't like this.

Emotionally I'm a mess now. My body continues to shrink and change in places and ways I can't help.

Thank you for the hormone to watch out for. I'll post when I have any other result.

Well, at least you can progress. I'm stuck mentally and can't propel myself forward to advance in anything right now because of the mental hindrance this is causing me. It's obviously justified. Of course this is an excuse at the time as I can do things still - but, knowing my health is falling and will continue to do so at a high rate gives my "Doesn't matter" mentality an empty justification. Doctors are criminalized now and don't care, at least that is how it is in the U.S. They didn't used to be this way. I've noticed a change in their attitudes the past ten years.

I haven't had much of a choice. A lot of really strange decisions have been made in the last week and very quickly. I haven't been able to accept it completely yet, I see the benefit and it's helps prepare my children's future when I'm gone. Ugh! Yes you're right, I can do things still but my give a craps are running low. I had 2 girls at home a few days ago to fight for and now they aren't even there. Trying to save myself has cost me everything that I held dear.

The doctors with no sense of urgency and needing a paper trail to do anything and that's if they feel it's justified.

I told my doctor I wanted the muscle biopsy. I told her that I knew she figured I was crazy and that I had taken myself off the Zoloft I was on since the middle of May. Let her know about this site and that there were 50 followers of people in the same desperate search and that was something that was talked about.

Yeah. It's wise to link them to this thread. Them taking it up and reading it is a different story. I forgot you used Zoloft before, they'll definitely dismiss you off that fact alone. Well, I'll still be trying to find out my problem. There's no point in "saving money" if I'm dead. Though, it does feel as if I'm being medically pimped. I mean, there are millions of people who go through medical facilities yearly, there is no reason why they shouldn't have a record of this anywhere. It's why I feel I'm being misled.

I may have asked before; have you ever fainted or passed out from something other than blacking out from alcohol? Also, is just one side affected or both? I know you've stated this before but it's hard to remember it all. Is your (more) affected side more wrinkly? Skin looser, etc.? And do you have constipation issues? How about lying down to sleep and breathing. Do you lie on your left/right side? Or back? Or stomach? When I lie down I have to hold my nose up to create a bigger hole to breathe through it. I do this by keeping my arm elevated so that my nose is naturally vertically enhanced via my hand just being there and resting my nose on it. Otherwise it's hard to breathe through it. I feel whatever is happening to us is happening while we sleep. I say this because after my six month hiatus of not drinking in spring/summer of '20 - I drank and the very next morning I awoke with my whole right side being deflated in size/mass/strength etc. (top of head -> bottom of feet). As before my left side was a gradual change. And of course since then it's been getting worse on both sides (though my left is the effected far more).

I have fainted once but get light headed often. My left leg has been bothering me since 2016. The shrinking in my right abdomen started in the early 2000's. Thought it was and still could have been because of a broken rib. Maybe a physical therapist could tell me, I don't know. I've seen comments on here where people are saying some of their issues were vascular. Get this, I had a problem with my left knee last week and finally went in to make sure it wasn't anything more serious. They found what he said was a cyst and nothing to worry about. I also have regular old age stuff and a bone spur. He sent me home like it was nothing and I was glad it was. A few days later I get the report. In it, I read "Calcification in the popliteal space is likely

vascular". I read that and Googled it, I know what vascular means. It doesn't sound great and does potentially answer some of the questions of what's going on. I messaged my doctor this morning to see what she thinks. I believe I should ask to see a cardiologist anyway because I was born with heart trouble and had surgery in 74' when I was 9 months old. It's been nearly a week since I had my blood drawn and still no news.

I am continuing to waste away more and more each day. Yes, my skin looks different now and if I rub my muscles they feel differently also.

Do you have a belief of God? How do you feel about "alternative medicine?" I'm about done with doctors, they are worthless. I have a Reiki session scheduled today to see if I can get any relief from that. There's also something called the emotion code that could come in handy. I was born with trauma and my whole life has been one after another. I know the body stores that, the brain does also and it could manifest. I'm going to start exploring other routes, if nothing else, I'll find peace.

Not sure what I said that needed moderated. Crap! I'm droopy and my skin sags and looks different on the right side. I have drank less than 12 wine coolers in the last 2 weeks and I hadn't drank much for the last 2 years. When I did, it was usually until I was stupid drunk or the liquor was gone. Usually the cheap vodka since I was poor and drank too much for an expensive habit.

I don't have constipation issues yet but as I feel my guts all start shrinking I get more worried.

Do you feel your body when it gets smaller? Like I'm sitting here typing this and I feel like my lower abs and being contracted but I'm just sitting here doing nothing. Last week I had that same sensation in my upper abdomen and chest. I can't do anything to stop it.

Calcification in the popliteal space is likely

vascular was listed on my knee x-ray from last week. He said it was a cyst. Googled it, oh, it's not! I messaged my doctor about that.

My skin is droopy too. As I said before: I'm lucky that I have 25% body fat (don't worry, I wear it well [n/h]) because if I didn't I'd look like a skeleton. I used to be Mr. Universe strength; now, I'm just a withering corpse! I've felt my guts shrink and remain feeling such. You can definitely tell when the region of your body is being attacked/losing its substance. They said I had a cyst on one of my kidneys, of course said it's not dangerous. They'll be seeing me on my final act if this turns out to be detrimental like a malicious tumor though.

I have even gone as far as asking for testing for STD's like HIV/AIDS and Syphilis. I have been single most of my life so occasionally promiscuous. Not saying that I've had a bunch of partners but my partners have potentially had many and I haven't been one for protection. I had more body fat, it's slowly dwindling. I'm starting to make my final arrangements and peace with going out cuz I don't know when it'll happen but feel the urge so strongly that it scares me.

Well, if you're losing body fat your condition is different than mine. I'm just losing muscle. My body fat is the same, it's why I don't look like a skeleton yet! I went to the E.R. in the summer of 2019 and they checked me for STD's based off my symptoms - this was far after THIS problem started. They said they all came back negative.

I assume it's fat because of how quickly is going down. I need to go to the gym tomorrow and check that.

I've passed out numerous times in my life, mostly due to drinking though. It'd be odd if your problem started in 2000's because that means it took a long time to progress. My problem has only been around five years to my knowledge and progressed quick. Especially after the first two years. Someone here did say they had vascular problems and got their blood flowing better via surgery and was recovering. Who knows if he/she had the same issue and if it even fixed anything. People say a lot of s**t that comes out to be false. Plus he/she hasn't been back to report results years later.

When it comes to "God," I think our world has a creator. Similar to how a human can create a bird sanctuary and then place two eggs (one male, one female) inside the bird sanctuary and never return. I don't believe in "free will" because we are either a) driven via genetics which derive from the environment or b) from God's will. Life is basically a script playing out (to me). Everything from the past determines the future. No person can choose to change their future because it's all predetermined. Alternative medicine is something I don't like the sound of - I feel it'd be more popular if it was more successful. The mainstream medical industry is corrupt as possible though, so it's a bad choice either way. I've had conflicts and things; but, I've never had the thoughts that I was traumatized. I've been someone who enjoys friction with people.

Could be your muscles and it just looks like fat is leaving. Do they ever test your B.M.I. at the doctors?

Are you always tired/low energy like me? I've been like this for a while now. I used to be the most energetic person around.

Got my labs back, my Kappa light chain results were high. More labs to finally check for Amyloidosis and multiple myeloma (which my paternal grandmother has had for 20 years).

I'm tired all the time. Been disconnected and trying to stay positive.

Sorry to hear. I wonder why nobody has suggested for me to get my Kappa Light Chain(s) tested - I never even heard of this phrase 'til you just posted it! Amyloidosis, what makes you think that could be possible? I asked about it before and my neurologist shut me down.

Only throwing that out because of the fact the the Kappa light chain is elevated so that means it's a plasma disorder. There's a few different ones out there. I'm not sure how many of the symptoms I have for Multiple Myeloma in comparison to Amyloidosis BUT looks like what I'm dealing with is a type of blood disease.

I have bugged the hell out of my doctor. I've had the EMG/NCS testing with those results and my insistent emails about other things to try. I get my ideas off here, that test just happened to be in some she ordered and it as a hit.

Good luck! I've been fatigued so badly lately. I get up and eat - then around four hours after I awake I'm so tired I want to nap. It's nothing to do with eating in the morning since I've been doing that my whole life. Whatever this is affects the totality of our being - blood disorder seems like a good guess if it's not a cancer! I just want to know why my left side is more broken than my right.

Most likely is a type of blood cancer.

I had low IG, high lymphocytes, high Creatinine, low bilirubin and low anion gap. If you look up muscle wasting in cancer patients it makes sense. It makes a lot of sense. The one side thing doesn't make much sense with Myeloma but would with Amyloidosis because it could cause heart issues, which of course then is vascular. I'm just trying to connect dots.

Well, beside muscle wasting (most affected on left side) and low muscle endurance, I have the following problems:

a) Constipation

b) Genital shrinking/inoperable status (used to be large genitals, now shrunken and can't get a real erection and less powerful orgasm, and less sperm etc.).

c) Can't imagine images in brain anymore/don't remember dreams if I do dream.

d) Wake up feeling fatigued no matter what, become fatigued a few hours after waking up in a sharp manner.

e) Dry mouth/throat more often.

f) Lines are being left on my body from wearing pants/socks etc.

g) Left ear ringing since Dec. 2021.

h) Hair loss, left side of body has LESS hair than my right. I am hairy naturally - not like SOME; but, more hairy than the average person.

i) Fear and other emotions are suppressed - I've had a life of conflict with people (I'm a competitive person and don't mind conflicts and kind of like the thrill of them) so I'm naturally wary. But my emotions like getting angry, sad, fearful etc. are kind of dwindled down like everything else.

I'm obviously dying; but, I do have some benefits. I sleep easy at night, my assumption that I'm done for allows me to have a stress free mentality and I enjoy eating more because I quit drinking and I don't think I'll be around much longer. I just know what is going on with me is more than muscle.

As I've stated before, when I look at people who have ALS or MS (I assume they have it if they are on T.V. representing such a disease via documentary, and I did know someone with MS) they do not have the physical traits in which I have. It looks as if something is burning away parts of my body. Left side of face sunken in more than the right - the right is still affected. Left side of body feels less connected and more hollowed - right side is is still affected etc.

Just four years ago my erections would be over seven inches and hard like metal. My sperm would be in great amounts and orgasm would be strong. I was able to build muscle easier than most and even without exercising be stronger than those around me. Same with my fitness in regards to cardiovascular endurance (I was a long distance runner, my sprinting was still strong though). I never was fatigued or tired, or had a feeling of low energy even if I didn't sleep long. I did have a job where I had to stay up for more than a day straight sometimes. I wonder if that is a factor in this. I could point to many things being a possible trigger. I guess I just got too cocky with drinking and doing other dangerous things that I may have triggered this. Or maybe this was going to be regardless of lifestyle. I say this affects more than just the muscles because even the cartilage on my left ear has shrunken/hollowed out. The right side is the same as I say for the left; but, less affected. I can't repeat this enough to give a proper accurate picture. I am in my late 30's and before that I still looked young. Women said I had a baby-face! Now I look older 'cause my face has less mass/substances/muscle and sunken in. If I could retreat to my previous state I would still have the appearance of a college student. I still have hope we can reverse this s**t!

Forgot to mention food has been getting stuck in my throat more often and I have bad waste retention.

I keep repeating things but it's important not to forget. I forgot to add my heart has been at a different pace since 2019 of March. Faster beating. I had my heart checked out twice since (once as recent as four months ago) and all is well they claim. Stress test and nuclear picturing. It's a strange thing. This heart beating quicker coincided with my genitalia lacking erections in the morning. And of course this main problem (whatever it is) started before then and has gotten far worse after that.

[]https://www.cancer.org/cancer/multiple-myeloma/detection-diagnosis-staging/signs-symptoms.html

I think this would be beneficial. For me, especially with my blood work, seems highly likely. Even stroke symptoms like one sided weakness. It does say people live about 5 years. This is the type of cancer my grandmother has and she has been fighting for 14 years at least. She just turned 90! I didn't know of any atrophy for her but I haven't asked questions either. I'm going to go visit this weekend. I should have the results for the blood work I'll do tomorrow by then.

I'm being sent to a hematologist. My doctor spoke to someone at the John Hopkins Institute and he said he thinks I have monoclonal gommopathy. With my "complicated family history" of blood disorders they think it's warranted. I have my muscle biopsy tomorrow.

We might finally be getting somewhere. Have you had your Aldolase levels tested? I have the actual biopsy tomorrow the 22nd of July and should hear something by the 27th, the following Wednesday. In my latest labs, my Aldolase levels are low, which indicates muscle wasting. FINALLY not only can they see a little something happening but now they're finding the proof in my blood. I'm really starting to think it's neuro muscular. Have you read about any of the Myositis? I have a lot of skin damage so the derma one makes lots of sense to me. I'll read more, meanwhile I'm just waiting to get results again

I don't think I had that tested yet. My physician and other specialist I see must be neglecting me for some reason. Maybe it's because I don't look weak yet because I used to be all-muscular and I have fat to hide my shortcomings for the moment (kind of). I suppose I can suggest this since I've been my own doctor the past three years.

Can the "Aldolase" levels be raised via some injection etc.? And it's crazy how they are noticing your symptoms all while not mine when I've been affected by this since (late) 2017 or (early) 2018. I have seen some of Myositis but not deeply.

Thanks for the information - I'll keep this in mind. I'm jealous your medical handlers are being progressive and actionable all while mine sit on their hands. I'm remembering these people before I collapse for good. And why was your message above this deleted via moderator?

I don't get your logic in saying you may have Myositis (auto-immune inflammation disease) and then saying you think it's a neuromuscular disease. As they are two different things. Can you clarify that one side of your body is more affected than your other? Like you can draw a line in the middle of your body from bottom of feet to top of head and notice a huge difference between the two?

I forgot to mention. My skin seems fine except for: It's looser, less thick feeling and more wrinkly on the left side than my right. As I repeat: my left side is the MORE affected side of my body - so the decay will show on that side far more than the right. I don't know if it's because of the skin and other attributes or because the muscle wasting is worse on the left side. It's hard for me to tell. I did have some red rashes on my lower leg area around my ankles a few years back and my right leg is missing a patch of hair around that same area as well. It's so strange. And since the hair grows out of the skin, I have less hair on the left side of my body than the right. It didn't used to be this way. I suppose it's hard to notice from the third person view; but, I notice easily.

My replies are coming out like bullets from a gun because I keep forgetting details. I want to say in relation to the skin that the part of the eye called the "lacrimal caruncle" shows more than it used to. I don't know if it's because: a. i have lost muscles in the region so it shows more; b. i have lost skin in the region so it shows more; or c. it shows more because it's swollen/enlarged for whatever reason.

As far as what this is, I am still clueless. I just know what's showing up in my blood work. I live in the Salt Lake City area. There are lots of amazing doctors here. I honestly have cried and pushed my doctor's in absolute desperation to save my life. Being in this site has given me the opportunity to see different things I could be tested for. I brought them up, let them laugh and then watched the curiosity grow. Physically one side of my body is completely different, the problem is that I do have generalized weakness and shrinking on one side more than the other.

The hematologist I've been referred to works for the Huntsman Cancer Institute. My thoughts are we all have different bodies and genetic make up. We aren't all going to have the same exact symptoms. My body is making an extra protien and it seems to be low on an enzyme which allows them to see there is actual muscle loss happening at a level they can see. I have an official diagnosis of muscle atrophy. So far, that's it.

Oh thanks. I'll update if I find any new news.

Do you ever feel tremors in your body or any of your limbs? I notice I kind of get the chills more often then I used to and usually only my right side reacts. Not to mention the normal times I feel my body feels tremors.

When I first noticed a problem was when my left leg was experiencing tremors as I lied down to sleep at night in the summer of 2019. This occurred for about three weeks straight. I thought it was due to my over drinking at the time. I mean I always did - I just thought it was a reaction to my body being unable to process the alcohol damage like it used to. Fast forward Fall of '20 or shortly after I was losing mass everywhere quick. The worst damage I've taken seemed to be from 2020 - 2021 and it's still ongoing, just not as fast as that yearly span. My lips had tremors, upper eyebrow area, fingers, hands etc. I have had the sensation of a tremor in my left leg again - except it never came to fruition a month ago after walking a few miles. I feel like the tremors are just my body dying out and now that it has died there is no sensation of a tremor since there is nothing to tremor there (you know what I mean).

I have gum problems only on the left side of my mouth (my problem side).

Do you wake up tired or is it just me? It's been this way for a while. Obviously connected to what is going on.

Wonder if it's possible we have AIDs (R.I.P.). I was tested for STD's back in summer of 2019; but, that doesn't mean they tested for H.I.V./AIDs.

No news yet on my muscle biopsy. I finally have gotten a referral to see a hematologist to check my blood. I have to go do a 24 hour urine and blood work before they'll schedule that appointment so I'm going to go pick up that crap now.

I've been tired a lot. I don't sleep like I used to. I have shrunk so much and lost so much muscle. Mostly on my right side and left leg but it's generalized now all over. I tremble quite a bit. I'm finding it hard to stand up straight. My back has been bad for years and losing the muscle to hold myself up has been no joke.

I'm glad that I had so much muscle to lose or I'd look even more horrible. Everyone says how good the weight loss looks on me (30 lbs), if they only knew it was because I'm sick.

I was tested for HIV 2 weeks ago, not it.

Being tired has to do with this because as this progresses my fatigue/tiredness increases. Unlike you I can sleep easily. The quality of sleep is a different story as I feel so tired when I wake up. My muscle loss has me looking like a raisin. Especially my feet! And being in any position except horizontally on a soft surface is difficult/uncomfortable for me now. It even hurts my butt when I sit down on a bench (as I did recently to eat somewhere). People love to say there is an improvement in looks if you appear to thin out; even without knowing the reason behind it!

Guess that's a good thing. H.I.V./AIDs/ALS and a few other diseases are death sentences. I suppose it's a bright spot to not have these be the reasons.

I would love a diagnosis. A raisin is a good way to describe it. I'm about to stop trying to figure this out, go rent as little place in Colorado, get disability and smoke weed in the mountains until I stop breathing.

Yep. Nobody else here has returned with a diagnosis. Looks like that may be the case with us. Something must have happened to our brain some how. Even though the MRI show no damage or abnormalities.

I feel like something is wrong with my brain. The side of my body with the atrophy feels like it's happened at least in my scalp. As with you my hair feels barely existent there. I can feel the muscles tightening up, soon after I guess that's when/ how they're disappearing. I don't know. All I can do is not freak out as I lose my strength. I have requested an appointment for SSI. This is moving so fast, I'm starting to lose hope. Everyone says to stay positive. When is it time to be realistic about what we're feeling also. I wish more people could understand.

When I sat down with my employer the other day to talk to them about this and how it's starting to affect my job, he mentioned his grandma was diagnosed with MS. I've had multiple people tell me that. I'm starting to wonder if this is some type of post covid version. I really don't know, I just know that so much of my body is involved. My insides feel like they're shrinking also. Like I'm being pulled back to the center of my body physically.

I really would like to know what this is so I could make the choice to fight it or not, now I'm just surviving and that's tough.

Well, ever since this started happening I can always feel my left side different (in an abnormal way) compared to my right. My left side feels hollowed/disconnected in comparison to my right - though, my right side is also affected (just less severe). My hairline is slightly higher on the left side of my head. I can list abnormalities between the two sides forever though (subtle and still present). I stopped "worrying" about this a while ago. I guess it's my brain's way of adapting to the situation. I'm just here now, here and broken. It's easy for people to tell one how to think from the outside, it means nothing.

I can say with high confidence that this isn't multiple sclerosis. I say this because someone I knew had a mother with it and she had no physical characteristics that this problem has. I suppose there are different types - so, I could be wrong! My problems started way before Covid-19. Atrophy is occurring inside of you. I have constipation problems because of this. I also get eggs (when I eat them) stuck in my throat sometimes due to atrophy. I've seen three neurologist and they all tell me they don't know what I'm experiencing. The last one said he doesn't think it's from a stroke. Actually, they all said that. It's hard for me to believe these doctors though. They're all in it for the money first, the illusion to help your health last. Millions of people filter through the medical industry every year, there is NO way they don't have records of people who have the same problem(s) we have.

Our list of problems is very similar. I'm starting with the constipation now. I can't believe with the people that have been on this website that nobody has found anything. 4 years, this many people. I remember reading one lady had gone to the Mayo Clinic with no answers. It's really unbelievable.

I think it's because they know they can get away with playing stupid since it's so unique. Then we're medically pimped out of a lot of money and they become enriched. This thread is kind of funny in a way like a bunch of insects (us) running around to find an exit (diagnosis/cure) while a predator (whatever this is) is taking us down one by one.

I theorize that people from this section have either: a) died, b) accepted their fate and never returned here because it's redundant or, c) possibly found out the problem and either was told there is nothing to improve, maybe stabilize, or surprisingly fixed and never returned since their life was no longer threatened.

Either way, it'd be nice if someone would update. I estimate around 30 people in this thread and only one person has returned. Why do I keep coming back? Desperation and that's all. I'm not used to being weak! I used to be one of the best physique wise one can be. I was naturally better off than others in strength/running department. I still have those genes; however, they're being suppressed and stamped out by !THIS!

I know you mentioned differences with your teeth. Do the insides of your cheek feel different from each other?

Everything is different on left side compared to right. Normal people's cheeks protrude out more on the left side than the right. Mine used to be that way, not anymore. As with my gums, they feel less volume than my right side. My left gums also bleed while my right side does not. I have one spot on the top left of my gums that gets irritated every so often because food (chicken in particular) gets stuck in it and it becomes inflamed for a few days. I've never taken care of my gums that well throughout my life, or teeth. The dentist say they look fine though (ya right!). My left side of the gums definitely look less "there" than my right. Of course anyone looking at me wouldn't admit it. The dentist included!

I've noticed the feeling that I've been biting my cheek. I know that I haven't actually done anything differently with my mouth. Now when I chew on my right side I catch my cheek more often. Just ran my tongue on the inside of it and it feels completely different. I have a partial in for dental work and on my right side it doesn't fit very well anymore.

Yeah, if this is muscles only (which is possible, though not entirely convinced) it's probably the muscles inside the jaw/mouth area that are giving this sensation and the presentation of a collapsed mouth structure. Inside of my right cheek feels more full than the left, as with anything with me these days.

Have you seen a cardiologist?

I had more blood work to do when I dropped off my 24 hour urine yesterday. I can log in and see the results. My Kappa light chain is still off, it also shoes I'm anemic AND my GFR is steadily going down. I've had issues with my kidneys in the past. I'm starting to wonder about chronic kidney disease. That would also cause the muscle wasting. Mine started out mostly on the right side but my whole body is affected now.

I had my kidneys and liver checked in July of 2020 because of my heavy drinking and this problem started getting worse fast. The test showed that they both were within the normal barometers of function; however, one was close to being over/under the line (whatever word represents a fault). I forgot which. I did have some kidney pain in it in the summer of 2019 that made me take a few days off drinking! I haven't had any pain since. I have had them both looked at via imaging recently. They say I have a tiny "growth" that is benign and "nothing to worry about." I never like the sound of that! It's been there probably since I started having symptoms!

Chronic kidney disease/failure could be something. Since my Kappa light chains are raised, I know there's something wrong with my plasma. There are a few different light chain disorders that have nearly every symptom I've had and even some of the same normal range on tests that were run. These doctors think that because it doesn't check every box it can't be that so they don't bother looking further.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7806311/

I had a incident 10 years ago when I lied down after drinking alcohol to go to sleep. Once I lied down I had the instant sensation to urinate and I did urinate a lot of volume. I came back and lied down again and the sensation returned, this happened four-five times even though I urinated a lot of volume and felt no need unless I lied down. Ever since I haven't had the same sensation to urinate and I have urinated less than I feel I should for what I drink. Of course since then I've had my bladder checked numerous times (and my kidneys once in 2020). It's possible this is linked to what is going on and may have been the beginning. Have you heard of hormone: "Angiotensin II?" I feel it's possible ours may be deficient and maybe a fix would be to regulate and fix the hormone deficiency. It affects muscles, urinating, etc. At least that's what I have gotten from reading about it for a few minutes. It's hard to understand to me; so, I'm just going to wait until I see another doctor to bring it up. I feel if I had kidney failure I would be dead already since my symptoms started over 10 years ago in relation to the urinating difference. I thought it was due to drinking because drinking exercises your bladder to retain more liquid etc. I haven't drank for almost 200 days and it's the same.

I read a lot of the link. I suppose it could be a possibility. It's a nightmare seemingly if it is the case. I wish they had better pictures. I notice the first picture the person's left side of face seems to protrude out less than the right - which is abnormal and like mine as this time. My doctors don't do any of these crazy blood tests for me, unlike yours.

I want to add that one of the three neurologist that I have seen shot down my question of if I had Amyloidosis. She did it with high confidence; even though, I know you have to test specifically and specially for it. I see that "Light Chain Multiple Myeloma" is listed as a type of it.

Forgot to mention someone here said he had this problem for around 25 years. Which far exceeds the expectancy of "Light Chain Multiple Myeloma" according to "Google." I know "Google" is a socially engineered search engine to condition brains; but, I doubt it will try and lie about something this specific. Could be wrong though!

Again, as I've said before, I don't know about anyone else. I know people's bodies react differently for a number of reasons. All I know is what I'm feeling and what my tests are showing. I still have no diagnosis yet and who's to say that's exactly what's wrong with anyone else here. I wish there were better answers. I don't think anyone on here is going to have 100% matching symptoms though. You had mentioned Angiotensin II, I don't know anything about it and have no record of anything being tested. I do know with my family history of plasma cancers, I think at least I'm getting somewhere.

Here's a new word. I was looking up different things at work, 12 hours and most recently all spent reading and researching. There's something called onycholysis with your nails. Do you have that? I sure do! It all started about a year ago. When I really noticed my health going South.

I don't notice that going on with my nails. I could be ignorant though; I feel they look the same as before. My toenails don't grow that much though. My fingernails still do.

This really is beyond frustrating! Still no news on my muscle biopsy. I do have an appointment with a doctor at the Huntsman Cancer Institute in Salt Lake. I'm 80% sure that this MGUS they've diagnosed me with is in fact multiple myeloma or another type of blood cancer. My labs are starting to show it. I'm anemic, low vitamin D, low Aldolase, high kappa light chain. Depending on the day they draw my blood I've had high Creatinine levels. I already know from my first set of tests that I have a mild case of asymmetric septal hypertrophy. I think this affects most of the muscles in the body.

Though our condition is malicious - I'm relieved you're getting help as I'm getting none. I told you my heart imaging scan(s) returned "normal" from last February. Even though I've had a faster heart beat since February of 2019. I've done two heart imaging, two stress test, and one heart monitor take-home. They all say it reveals normality. It doesn't match with my faster heart rate. I see "asymmetric septal hypertrophy" is something I'm sure I've had since February of 2019. Around the same time this problem began accelerating. I made the mistake of getting two drinks at the bar the other day while waiting on my food (to take home). Of course it had been a little more than 200 days since I last drank so I felt them (being largely filling the glass in addition to many days not drinking) - later in the night my heart began beating faster than normal (which is fast in itself). Last night (the night after my judgment collapsed) my left leg was having the sensation to tremor again. That was the first sign of my problems back in the summer of 2018 (I say first, meaning consciously). Wonder why these two things are connected?

I tried getting into a doctor yesterday and I was refused because they didn't feel they could help me. Lies. I was recommended to see this doctor by another doctor. Afterward, I called for an appointment regarding tendons (muscular) and was told that they were revealing my files in order to determine if they could help me too. I'll be denied this request as well I'm sure. At least you're getting assistance! It seems I've exhausted all my avenues here; or, I'm labeled with an asterisk as to avoid me now. I've been more stressed than usual as of late, I can feel my condition worsening and the enviable outcome being my heart bursts, kidneys flatten, or brain squeeze until it's dry. It sounds like you're on the right track and maybe what you discover is what I have as well.

I've had enemies throughout life like anyone else - many I've settled scores with etc. Nobody has affected me as much as the neglect from doctors now in the times that I need it and have gone through great effort to get help. They're now my enemies and I'll wait until the second I collapse permanently to get my revenge. This may sound erratic; but, it's how I feel. I don't believe in the higher ground when the ability to help me is so easy - yet, denied while others with lesser problems are seen.

I'm obsessed with our disease! It's all I think about. It's crazy no matter how you word your searches nothing like our conditions come up. I've never seen anyone who looks like a raisin like me! You know how people are supposed to have puffiness underneath their eyes as they age or don't sleep enough? That area is sunken in just like the top of my knuckles - this can be painted all around my body and it's the same head-to-toe.

Has your urination changed at all?

I have been quite obsessed also. The stuff showing up in my blood has made me less desperate to find answers cuz they're finding them with me, at least I think. Won't I be surprised if they tell me they still can't figure it out. Honestly, at that point, I'll be done looking I think. I don't want to obsess anymore. I'm applying for SSI, got my appointment on the 25th. I'm about to book a trip to New Orleans the middle of September and am possibly planning a move to Colorado in October. If I'm going to die, I'm going to be where I want to be and happy.

I don't drink a lot of liquid so I don't pee much anyway. I haven't ever gotten checked for any of my organs until now.

Oh. I just know my urinating/release of stool is decreasing at a constant rate similar to how I appear.

I know my innerds feel like they've changed. All of me is shrinking. I have been waiting for an upper and lower GI scan, it's scheduled for the 29th of this month. Very curious as to how it'll all appear to a "trained" eye.

The inwards do shrink, that's why I'm constipated!

The only thing I'm betting on still is the appointment on the 12th for the hematologist at the cancer institute to give me some answers. It's been 2 weeks since my muscle biopsy, I called the last 3 days, no return call. I'm absolutely frustrated that all of this crap is showing up in my blood work but I still can't get an answer. My doctor said since at this time there wasn't extra calcium in my blood that my muscles weren't wasting. Ummm, not sure how that correlates BUT I do have low Aldolase levels which when I Google it says fructose intolerance or muscle wasting. I have a skin cancer full body screen on the 11th. I'm sure I have some damage, but again don't think it's causing all of this. 12th is my appointment with the cancer institute and I have my upper and lower GI scheduled on the 29th. Fingers crossed!

Yes. I don't think our problem is nerves anymore! Cancer somewhere eradicating our body! Good luck! The two places I attempted to see denied scheduling an appointment; so, I have to go to my primary again (which is always a waste of time).

Wanted to add that I'm getting worse - seemingly internally. Every day I awake I feel worse than the last. Seems like the inside of my mouth (top part) is thinning out. Throat, inside my stomach etc. It's insane! It's why I don't feel this is a nerve thing...unless this is all system atrophy - a death sentence within five years. I've felt this came upon me in late 2017/early 2018; but, it's possible this may have been happening before at a FAR slower rate. I say this because of my urination changes in 2011/2012. Either way, I'm in such poor shape my mind is defeated. I never had issues when it comes to a defeatist mentality, the opposite really. This issue is such an obvious sign of death coming soon it's almost impossible for me to feign optimism. It's hard to know if we have the same thing, as your symptoms don't appear as progressive as mine (yet); however, if you draw a line in the middle of yourself and it runs vertical up/down you should notice a huge difference between the two sides. That's how I felt at the start. And of course the "sucking in" of features such as the portion underneath your eyes. It should be puffy/protrude out - yet, mine is sunken in like a sinkhole. This trait is present from bottom of feet to top of head. And of course my internal organs feel (in this case feeling is fact) in the same condition. Producing a plethora of symptoms universal in my body (operations exercising at 30-40% productivity). Put your palm flat on a surface or extended in the air and the Middle Phalanges back of the finger area will be more wrinkly and sucked in like mine. This is a nightmare and it's even worse that no diagnosis after all these years!

I just got back from my doctor! Unlike your doctor(s); mine is simplistic and may not have the knowledge/care to find out my problem. Either way: I am having a test to see if the artery in my abdomen is plugged up as someone earlier in this thread suggested us do so. He said the vascular specialist diagnosed him on the spot and that he had a blocked artery down there and once it was fixed he started to heal. Of course his problem may not be OURS; but, it's worth a shot! I'm also going to see someone about hormones etc. And of course (for their profit) - more blood test for various things I'll update here if when I get it!

Saw Ashton Kutcher caught "vasculitis" and may think it's possible for us. I say this because I looked at some pictures and someone had a left leg smaller than their right - in regards to muscle loss due to it. This is abnormal as NORMAL people (even with other diseases) have a left leg bigger than right.

I'll have to read about vasculitis. I am beyond irritated! I've been calling my doctor for a few days about the muscle biopsy. To no avail! Finally today I get a call back, they've had the results since the 29th BUT the doctor was out of town so they just sat there. He's back in town but really busy his medical assistant said so he'll call me Thursday with the results. I was told it wasn't an emergency. WHAT? I've only been waiting for this procedure for months!! Of course, there's nothing I can do but wait. I have noticed some very strange things about my head as well. For lack of a better description, I feel like just behind my right ear there's a "patch". This used to be much larger but it feels almost as if my head is shaped like a bean. As if it's been pulled in in one section and then growing largely around. There is something wrong with that part of my head and neck. I do feel changes in my mouth. I go through spurts where I feel optimistic and then spurts where I'm ready to give up. I have a lot of appointments still coming up this month. If I don't find something definite I'm not going to look anymore. I'll just go enjoy my life away from the world until my body gives out. I did have the privilege of getting a referral to a cardiologist as well. I was diagnosed back in May with a mild case of asymmetric septal hypertrophy and trace regurgitation on 2 valves. I asked for a referral back then but was told that my problem was NOT related to that. They don't even know what I have for sure so how can they say what it has or hasn't affected? I haven't lost anymore weight. I still feel like my body is shrinking. My face, eye sockets all of that sunk in on one side. My jaw bone and bone under my eye seem to have shrunk also. Maybe this is muscle and bone. I'm to the point where I don't know what's all being affected because it feels like almost everything now. Both sides are being affected now, one side worse that the other but I feel a change in both as far as tightness in my trunk area and shoulders.

Doctors always go after the easy st to look good and avoid the hard st because it makes them look incompetent. It's a sad thing they care more about the optics than the actuality. As I said prior: the two doctors I've seen regularly before this I never thought anything of (good or bad); now that I have problems I see they are low quality doctors because they aren't even skilled enough to put on an act like they care to find the solution. I also have to feed them the ideas of what may be happening to me as If I'm the one studied for six years to become an M.D. To their credit, I am quite skilled myself in knowledge regarding medical issues since I've been around them my whole life and health has always been a passion. They waited on your results because they don't give a f**k about ya, just like me and those I see in the medical industry. The only care if it boosts their reputation or if it's a family member they depend on. My head used to be oval, muscular, chubby, and strong - now it is deflated and raisin like (skin included, most likely due to loss of muscle). And of course worse on the left side opposed to the right. Yours is probably shrinking due to muscle wasting and it'll turn into a raisin like myself. I've repeated this many times; but, since you brought it up - underneath the eye area is supposed to protrude out as you lack sleep or age, mine sinks in and you can see around my eye there's a ring look in which a circular indent is present. I'm lucky I have around 25% body fat (give or take 2%) because without it I would look like a skeleton! I don't know what you mean by a "patch" though. My skin has been normal for the most part except I lost some hair in an area on my right leg near the ankle where it's almost devoid of it. I also have lost hair elsewhere. My beard still grows with ease though. I don't understand how people can be jealous of beards when they lack one - I hate shaving! Your heart beats quicker? Mine started beating faster since March 2019 for some reason when I went to lie down to sleep and for about a week it was REALLY rapid. Since then it has lowered in speed; but, it's still faster than it should be. I have gotten two stress-tests and two heart imaging pictures ever since and they claim the photos look normal (yeah right). I feel it's possibly connected to what is going on now - as I know the heart is a muscle. Soon you might have constipation problems like me. I just use Miralax everyday, even then I don't have a sensation to blast it out. It just gives me the sensation at the end of the digestive tract to release it. It's what I'm forced to do right now. Better than having something stuck up my butt!

No, they don't care about me! Doctor called this morning to tell me there was nothing abnormal in my muscle biopsy. Then I read the report he sent in my file. It said multiple tests were not able to be assessed BUT the ones they did were negative so he said talk to my PCP again or a rheumatologist. FFS!

I have a skin cancer screening I've been waiting since June for tomorrow. Maybe that'll show something! Also, my appointment with the Huntsman Cancer Institute is this Friday. Still crossing my fingers something will show up somewhere. My bowels are already screwed up, didn't take them long and I eat healthy, so shouldn't have issues. I also have used Miralax a couple times.

I eat nutritiously as well; it doesn't help my constant constipation. At least your muscle biopsy was normal! It's better that the reason for our dying bodies isn't muscle related (muscles just being a side effect). I was suggested to see a Rheumatologist. I called and they told me they were reviewing my referral to see if it was worth seeing me (for me and them). That means they don't want to see me. Hopefully you don't have cancer! I have been urinating less the past week for some reason. My abdomen also has a soreness inside above the belly button on the right area around the middle of my abdomen. I suppose it's either my large or small intestine according to pictures on Google! It would be strange if our problems were due to an intestine abnormality. I've been checked numerously since this occurred with no diagnosis - but, diseases are missed all the time. I'm getting another ultrasound next week in my abdomen region to see if I have any blockages. Hope you find the reason for your problem, as it will be what I've been looking for. I prefer not to assume people's thoughts without proper proof (as it is ignorant); but, I'm sure you think the same as me! I'll report back next week.

I hope you find answers as well. This has been life changing in so many ways. My legs are starting to ache more, my chest is starting to concave. I am very thankful that it isn't something in my muscles as far as a dystrophy or amyloidosis. Though it's still hard to rule out because like you said, they miss things all the time. My doctor doesn't even have a full medical history and seems to not care to get one. Oh well! 5 important appointments to go still this month. I imagine I'll see a rheumatologist also, we'll see.

I just got test results back for something to measure my pancreas status - it came back normal. Along with other things on the blood test (thyroid level) and a few others. Of course! I've been thinking we may be victim to the almighty disease: "Multiple System Atrophy," the nightmare of all diseases. I've been stressing out to the maximum as of late thinking of all the possibilities. They say stress kills, I'm dying anyway though. Sometimes I envy other animals since they don't seem to stress about their death as much. Zebra just sitting there emotionless being eat by a crocodile. An injured/cancerous Fox lying by a tree in the forest letting itself fade away. Of course having a complex brain such as ourselves is both a strength and weakness. I've always analyzed things deeply - this particular reason is probably most likely going to send me away quicker no matter the condition.

They burned a small patch off claiming the start of skin cancer. Um, I told the doc I've had that patch since 2015 and has put CBD oil on it back in 2019. A start? The hematologist wasn't much help either. He did say that my lymph nodes were swollen but there could be 1,000 reasons for it. He asked when my last mammogram was (2016). He suggested I get that done, also requested all of my medical records as of late. He thought a referral for a neurologist dealing with neuromuscular diseases would be beneficial also. Meanwhile he wants the results of he upper and lower GI scan.

You know a month ago I was ready to just give up and go. I'm not though. I don't want to go out like this. I don't know what it's going to take but something has to give. Multiple Systems Atrophy looks promising also.

Absolutely nothing said that needed to be moderated.

They burned a small patch of skin cancer off my arm. Don't think that was the issue.

Hematologist said he didn't think it was Amyloidosis or Multiple Myeloma. Said my lymph nodes were swollen but there could be 1,000 reasons for it. Suggested a mammogram.

interesting find about the Multiple Systems Atrophy.

My arm pits are swollen looking. It just happened out of nowhere around four months ago. I went to my doctor and he was like: "I think this is just fat." Yeah right, unless I suddenly lost muscle underneath my armpit over the time of ONE night and it's swollen looking because the fat is still there and the muscle isn't. I got it checked out via ultrasound a month or so after. Test results suggested normalcy for my lymph nodes there (according to his letter) - however, he also said if I was still concerned I could get an additional test to be 100% certain. Why wasn't that test the one initiated at the beginning? Oh yeah, to medically pimp me out. I suppose I'll try and get that one since I'm still concerned about this. At least if you have skin cancer it can easily be fixed. Unless of course it has spread elsewhere! I've seen three neurologist and they have given me no answers. I have gotten a few test from my primary one though (two brain MRI, one EMG, some blood tests). All three have told me they don't think my problem is from a stroke. They also don't see much atrophy, even though it is obvious to me. The last one I saw (I've seen the other two just once, the second one didn't want to see me again because she felt I was fine [wrong]) claimed he noticed slight atrophy on me. I guess I'll have to be paralyzed for these people to realize my condition (unless they're faking me out). He also suggested I see a rheumatologist (he's the third medical professional to say this). How can I have issues with my tendons and wiring of my muscles/bones on one side more than the other though? That's why my primary neurologist says my problem is in my brain - even though the MRI come back normal. As with GI scans, I suppose the only one I have had in that regards so far is a colonoscopy last Sept. of 2021. It returned normal results. In my situation, I'm thinking I may have lung cancer, liver cancer, or possibly stomach cancer. They say colonoscopy checks for stomach cancer though. I'm thinking cancer is why I'm having these problems. Then I look at Google images of cancer patients and their face is normal looking (as in, even if they have muscle loss from their cancer it's still proportioned normally). It's so strange!

I've always heard skin cancer was the least threatening of cancers. I've known a few people who had it and was easily removed with no problems. It's crazy how these people can tell us that they know it's not Amyloidosis even though you need a specific test to diagnose it, otherwise you don't know. Multiple System Atrophy is one of the most nightmarish diseases I've ever read about - I pray that's not it! And don't let us have ALS, Multiple Sclerosis, or Parkinson's! When this first started happening rapidly, I would have some slight twitching back in 2020-early 2021. That has stopped though. I did have problems (more so on the left side) after exercising on 2020 (I always exercise high intensity because I feel it's a waste of time to exercise casually) holding things like a glass to get water afterward - I would be inclined to shake a little bit holding the weight up RIGHT after exercising. Wonder why that was and is? I gave up exercising for now until they find out my problem. It's like shoveling snow while a blizzard is going on.

Wanted to add my fatigue has increased greatly the past couple months. A bad sign.

I don't sleep well and haven't since I started working graveyards 2 years ago. I feel like I go through stages where I'm more tired. Like if my body seems to be actively fighting itself. I've had a cough since the end of April. I have been dismissed seeing how I have a medical cannibis card and I smoke it. I drank very heavily for years so I always wonder about my liver. I was hospitalized for pancratitis back in 2011. Had some lab work done just after I quit drinking and the endocrinologist thought I was on dialysis because of my labs. I need to try and get my medical records from 2016-2018 when I had my back surgery. I have had shingles multiple times, the first was in 2011. I have eaten pretty healthy since October 2018 but wouldn't say that I've felt very healthy. I love working out and miss it. I am worried about causing more damage seeing how I don't know what I have and what it affects. The hematologist mentioned not seeing anything wrong with my heart that my bloodwork is showing so that's a plus. The atrophy, there's only so many reasons for it! My abdomen has shrunk so much that I'm afraid that my organs on the right side that my ribs should be protecting, won't be protected much longer.

I do notice tremors, especially in my feet, even when I'm driving. My hands tremble at times as well.

Check your "Private Messages," I think I found our cause (brain tumor). I don't care what the neurologist says: my symptoms are just like the dogs!