Whole body muscle weakness/atrophy on right side

Any updates?

Just commenting to provide more data. 22 year old male experiencing symptoms for about a year now, maybe slightly longer. Started as just a strange feeling behind my left eye. Not painful just a sensation i had never felt before and it wasn't on the opposite side. From there i started to notice my face shrink on the left side and my left arm get weaker. Now i have weakness in my left leg also and am visibly smaller on my left shoulder, chest/ribs, arm and leg. interestingly my left hip hurts when i lie down along with my left testicle and the left side of my penis. As if someone had drawn a line directly down my body. Wish those last symptoms weren't true because they make me sound like a maniac but here we are. GP has no idea whatsoever and tends to just repeat common conditions that have no relation to what i'm dealing with. Referred to the neurologist but its been half a year and not heard back. Will update if anything changes and i beg you reading this do the same. Silver lining- atleast it seems to progress slowly.

Hello

Its Left sided weakness and atrophy for me.

Started around 25/26yrs old and I am now 30.

It all started shortly after my mother had a stroke. It was a very stressful period so cortisol and adrenaline must have been at an all time high which may have played a role.

At first I noticed some weight loss. About a stone (6.5kg or 14pounds) This was unusual as I had been overeating during the christmas period so was expecting to have put on some weight when I jumped on the scales. A basic blood test showed nothing out of the ordinary apart from a mildly elevated bilirubin level.

I was quite stressed with work responsibilities and worried that my mother was about to have another stroke at any moment.

At some point I became constipated. Never been constipated as long as I can remember. It was the kind where no amount of black coffee or anything would help. I used laxatives which eventually cleared it.

The constipation returned immediately so I used over the counter laxatives again for the full duration stated on the box.

It returned straight away so I went to visit the GP. After some poking and prodding I was sent away with some more laxatives of a different kind and was told to take one every night for a week. They worked but then the constipation came straight back. At this point I was eating a tonne and drinking loads too to try and regain some lost weight but something wasn’t working maybe the digestion or muscles or nerve pathway.

I went back to the doctor who prescribed a softening solution to drink.

To cut an already long story short I lost even more weight during this period of constipation until I weighed around 9 stone. I was around 12.5-13 stone before this started. I went barking up the wrong tree thinking it was bowel cancer or similar and payed privately (outside of the NHS) for some testing. To no avail. All results clear.

Around the same time as the weight loss and constipation I experienced some foot drop. I had been kicking the floor a lot walking and tore up the front of 2 pairs of shoes. I also noticed that going up stairs my calves would burn and my legs would slow and stiffen as I pushed to reach the top. Sometimes having to stop at the top for my stiff burning calves/lower legs to recover. This was unusual for me as I normally run up stairs.

My GP didn’t seem all that bothered about my complaints. My stools are still abnormal and I still have really slow digestive movement and eat a high fibre cereal and use the occasional laxative.

After the weak legs came a weakness in my arms too. Mainly the left arm, shoulder and wrist. I noticed that filling the kettle was hard as my hand wrist and shoulder wanted to drop it due to the weight.

I noticed that going down stairs my legs shake as soon as the knee bends. On every step. This gets worse if there is a long stairs or hill I have to walk down. It feels like I am about to collapse and looks like my legs are vibrating violently. I can also replicate this while standing by slowly bending the knees and lowering myself, then holding it there. My leg muscles will contract abnormally and bounce me up and down. It feels like a never ending feedback loop that I cannot stabilise.

Later on down the line I noticed my voice changing. It gets progressively hoarse throughout the day, and the pitch gets higher like I have strained my voice or something. I also speak much quieter now and my voice can get a little shaky. Also my once obnoxiously loud singing voice has vanished, I can’t hit a note or maintain any volume whatsoever.

Looking in my mouth it looks like the left side of my tongue is thinner, my epiglottis is leaning to one side and my jaw muscles are smaller on the left.

Also the clenching muscle that pops out near the forehead area is smaller.

My neck is a lot thinner and the left trapezius muscle has practically disappeared. The left deltoid/shoulder has atrophied, as well as the bicep, tricep, forearm and hand.

My left pectoral(chest), latisimus dorsi(side trunk) has atrophied, I suspect the abs too if they were visible.

The back muscles are also smaller on the left and my shoulder blade feels like it is sitting awkward.

Left thigh, glute, quad, hamstring, and left front and back of calf are atrophied, as well as the foot.

It is like someone has drawn a line down the centre of me.

No neurologist I see is that interested as the atrophy is somewhat mild.

Although I have lost muscle mass and strength on the right side too, it’s just that it is now my “strong side” so goes unnoticed.

All of you here will know what I mean when I say that my walk isn’t the same. Due to the atrophy and weakness my walk isn’t MY regular walk, it has changed due to the circumstances. It’s unbalanced, struggle to walk in a straight line and walk quite slow now. The more I walk the more tired the left leg gets.

I also can’t spend too long on my feet. I get pain in the bottom of my foot, I’m guessing due to atrophied foot supporting muscles and ball of the foot muscles . I get pain in the ankle, pain in the knee, lower and upper back/neck. All left sided pains. If I’m holding something that will also include shoulder pain.

Exercise has not improved my situation, in fact I tire out easily and it wipes me out for the day, and I tend to get like tendonitis type inflammatory pain from light weight lifting.

Even cleaning the house is like running a marathon in terms of effort and impact it has on me. I sometimes also get headaches after activity.

Within the last year or so I have noticed that upon waking up in the morning it feels like my left lung is partially collapsed and I have to reinflate it with a few deep breaths which is uncomfortable. It feels sticky and like my inward breath is pushing something out of the way to make room for my lung.

I worry that my diaphragm is too weak during sleep. I also sometimes wake up 1 or 2 hours after falling asleep and I’m quite breathless so spend the next half an hour or more awake just breathing.

I have payed for MRI of head and spine and EMG of left leg expecting something to be found but apparently nothing.

I too have had suicidal thoughts due to the negative effect on my life/relationship/work.

I just don’t feel like ME anymore.

I worry that it’s ALS or similar but my body is in the compensating stage where it’s using up all available motor neurons and systems before the eventual decline.

It’s infuriating that the NHS are not interested. It has made me realise that the NHS is broken due to chronic underfunding, lack of service equipment upgrade and systematic selling off to private interests. Us working class have no hope but to spend the measly pennies we do earn trying to get answers but it hurts even more when that also fails.

Maybe we have all had a minor brainstem stroke of some kind, have developed an autoimmune disease or neurological disease due to unknown factors. But either way I just want to KNOW so I can at least put my mind at rest and have an excuse for being semi-disabled. Which is how it feels.

Before it all began I was a fit strong guy that had worked building sites doing hard labour.

I got an office job and then a few years later this happens.

It just makes you want to rewind time and not take your physical strength, coordination and agility for granted.

p.s i made an account just to write this

Many comments refer to weakness & burning sensation on one side of body. I have a feeling that this may be due to a crooked body alignment. Suggesting a chiropractor to examine you guys.

I'm not a doctor, just OLD and been through a few troubles 😃

I'd also like to add - most every one of us will have a curved spine due to the weakness on one or more so one side of the body. The muscles/other elements collapse leaving a route for the spine to curve one way or the other. This is not the issue with the majority of us. I used to be a beast. Now I'm a nothing. It's also a bad sign (I've said this before) that many posters quit showing up. It's as if they die or become to weak to care to inform us of their progress. I've been experiencing this for coming up on four years (to my knowledge). I can say two years ago I was still a beast physically. Now I'm weak and frail. Help! Also to the original thread starter - let's see an update. I've had two neurologist tell me that they know this is NOT Parry-Romberg syndrome OR ALS. They also don't find anything abnormal with me. Which is it? >=D

It's really "Private Message;" but, I'll call it "Direct Message" - something I did to about ten users here and no response from anyone of them. Bad sign. Means they either found a quick solution and cared little enough after to come back and give information about such; or, they decayed and died (if so R.I.P.).

Wanted to ask anyone still remaining if they found a possibility of maybe having some typing of hepatitis? I'm ignorant about the virus/disease, I assume it could affect anywhere that blood flows (head to toe). Just an ignorant thing to throw out there. I ask this because I was walking in a crowded part of New York back in 2014 and someone in front of the crowd spat and the wind took some of it into my face/mouth area. Of course this is farfetched - maybe I contracted hepatitis from that.

I've had about 20 blood tests since that date and none have came up in alarm though. On the other hand - it is said that you need to specifically test for hepatitis.