Possible ALS/MND? Extremely Worried..
Posted , 72 users are following.
Hi, I'm a 27 year old male and have been experiencing what I am convinced are symptoms caused by ALS. I am not so naive to expect a diagnosis but I am so worked up, just some replies from people with any experience wether professional or patient would be appreciated.
I apologise in advance for the following lengthy, perhaps rambling account of my life at the minute, I just want to get some stuff out.
Ok, so I'll start with my symptoms- of which there are many. Please know that prior to the 'sudden' onset of the following symptoms, I've been suffering with things like back pain and chronic fatigue for about a year, but these next ones started I think about two months ago.
Arm and leg weakness- cant lift heavy objects, arms feel heavy and weak all the time, Im a naturally strong person (albeit naturally slim) but lately I feel as though my strength has been drained from me. Climbing stairs is a real task, It does'nt hurt, just the heaviness/rubbery weakness. Also ankle and knee weakness and shaking.
Fasciculations (twitching)- particularly in left leg, but also present in other limbs and tongue. (these only started a few days ago actually but are getting more frequent).
Muscle atrophy- particularly visible in biceps and calfs, rapid, so much so that I now have stretch marks on my arms where there was muscle a few months ago. No pain as such although i get a deep burning sensation in my shoulders and upper arms when doing something such as scraping wallpaper, or just holding my phone to my ear causes the burning after seconds, making me keep switching arms.
Speech problems- this is hard to describe without someone being present to physically hear but I cant seem to articulate properly, certain words come out slurred or mumbled, also my lips and tongue feel strange.
Balance/co-ordination- both standing still and walking. When standing I often stumble backwards, when walking I feel unsteady ,weak, like my legs are'nt fully part of me, wobbly, etc.
Nasal/ear/throat- Ive had what i thought were stuffy sinuses for months, particularly in the morning or late at night, but lately Im so nasal, and I've started to need to clear my throat a lot and my voice is weak and hoarse. Not sore, just hoarse.
Breathing- Slight rasp/wheeze when inhaling. Shortness of breath particularly when lying down, like i cant fill my lungs.
Shaking- Pretty much everywhere...when I lower my head from looking up position it kind of judders back down, arms feel very shaky although not always visible. Legs shake visibly with certain movements/positions.
Fatigue- This is chronic. My sleep pattern is usually up and down anyway but when I do manage a good 7-8 hours uninterrupted, I wake up feeling worse than before I fell asleep, a lot worse. Also started to get hypnogogic state (sleep paralysis) a lot lately, which isn't pleasant. Also, with the fatigue, I must mention that even just walking to the kitchen from the living room is excruciating. And as I mentioned before, going upstairs Is hard, I need to hold onto the rail to support myself.
Emotional changes- Anger/sadness mainly, the odd moment of euphoria/elation, briefly. Wether this is caused by the anxiety of all this I don't know.
One more thing that I'll mention is the burning sensation on/under my skin, mainly on the top and palms of hands, wrists and topside of forearm (can't think of the correct term), neck and sometimes chest and top and soles of feet. It's just a wierd hot, flushed, burning feeling.
Anyway, I'll leave it there although there are more but I feel like an idiot and I know I've written an overwhelming amount already. One small sidenote: yes, I suffer from anxiety, always have, always will. But I've had it long enough to know that the physical symptoms I am experiencing aren't related to that. Oh, also, I'm currently awaiting a neurology appointment as all blood tests came back normal, apart from a slight vitamin D deficiency, which frankly, has only led to an increase in my fear (that they were normal, so obviously its caused by something else).
I hope someone will reply as I've never felt as scared and alone as I do now.
Mike.
3 likes, 110 replies
hugo60781 NowhereBoy
Posted
Hello,
I'm sorry for your symptoms I get very sad and feel close to you because I have similar issues and other issues.
Heating your symptoms im almost 100% sure that doctors will never be able to tell you what's wrong and almost 100% sure you life was ruined by a "prescription" DRUG, try to remember when you started having problems and if you where taking and drugs before that. If it was a drug, SUE!! I wish I would have and when I decided to, the multi billion dollar law suit was over. Doctors will only worsen your symptoms, I know you might laugh when I say this but all you can do is eat right, excersise as best as you can, try to do I hobby you love and survive.... My life was ruined by a couple prescriptions all of a sudden it's tiring just to change an outlet plate on a wall.. I feel like I'm 80, and am only 30 used to be an athlete never seen a doctor in my youth until I was 20 and my wife recommended I start seeing doctors. After that my life was over. Sorry man.
sue18999 NowhereBoy
Posted
Mike, I hope you have your answer by now. My mother had ALS. Threr was not a defintive test they could run, but rather a process of elimination. We met many other people who suffered with this illness and although it can start differently for each patient it always ends up the same. My mother's started in one hand, and then up the arm. Next it went to the other hand and up the arm. Then it went to one foot and up the leg and then followed the same pattern with the other foot and leg. When it started up the torso on one side was when we started noticing the change in her speech. She never complained of burning or too much pain in the beginning, she just could not pick up things and hold them because she had no ability to grasp. The nerve twitching came about well after the weakness started along with the atrophey of the muscles that were no longer receiving messages from the nerves. For some people it starts in the foot first and they may be falling because the foot drops and they don't realize it until too late. We met one gentleman who had it start in his throat first and then it went to his legs. I never heard of anyone who started all over the body like yours seems to so I feel pretty sure that you are not dealing with ALS, at least that is my hopes and prayers for you.
Porko91 NowhereBoy
Posted
Has anyone heard any news in regards to this thread? Literally explained what I've been going through!
Daffie NowhereBoy
Posted
Hi my name is Debbie. I started stuffer w arm weakness & arm fatigue in 2006. I was a nurse but I couldn't open pill bottles fast anymore & I couldn't keep up w my work load anymore. My coordination started getting really bad in 2007, I could no longer ride a bike, play softball & volley ball. I was falling flat on my face at least twice a day. I had severe muscle spasms that would just worsen by the months/years, they did nothing for my pain. I saw about 50 doctor's, remember as a nurse I know how to discribe things all of them said I had Fibromyalgia. I accepted that and then it was 2016, severe bulbar onset which they diagnosed as Bells Palsy. But it's been 7 months now and they new Neurologist said after reading your whole chart of years going back I believe you have ALS...I was stunned, never thought of ALS once, after all it's a death sentence. My EMG & NCS is on January 3, I pray they are negative for ALS. Why does everyone on here want to have ALS?!?! You don't want ALS...If you are cleared of ALS you should be dancing & singing knowing you can now figure out that it's a vitamin deficiencies or something that can be FIXED!!! ALS can NOT be fixed!!! Anxiety causes many crippling conditions, please get help for your anxiety, see a dietitian, exercise and live life. ALS symptoms start decades back, if your EMG is negative for ALS you don't have it. I pray Jan. 3rd my test are negative & I can live. I am scared but I won't be a victim of fear...((hugs))
Daffie
Posted
Hi it's Debbie again. I get my EMG and NCS today, very worried but hopefully. I too have cervical & spinal issues. C5,c6 & c7, slightly bulging disk, bone spurs, stenosis and Degenerative disk disease, Neurosurgions ruled that out for my symptoms years ago. I don't know if Physicians can do anything but hypothesis, but in the meanwhile I am progressly getting worse!!!
sue18999 Daffie
Posted
Khaled2002 NowhereBoy
Posted
I am 55 years old and I am having the same simptiems , I have been diagnosed in Malta with PSP progressive supernuclear palsy, but I came to Canada and it was all wrong, as well I have diagnosed back home with MND and in Tunisia with bulbar sondrum and all were wrong.
My worries all about my speech which I have lost it completely.
I am still having a medical check up and once I will have a diffent diagnosis I will write to you .
Good luck
cheryl46755 NowhereBoy
Posted
Hello- I realize it's been over a year since you posted this. I have so many of the same symptoms. Did they ever find out what was wrong? Do you have a diagnosis? My heart goes out to you!
jason99962 NowhereBoy
Posted
hugo28027 jason99962
Posted
hugo28027 NowhereBoy
Posted
ozcar NowhereBoy
Posted
Hi All, it's been almost 2 years since I had a chance to get. Back to your replies on here , well on the bright side I'm. Still alive and kicking, on the other hand no diagnosis or solution as yet, let me however go over what has changed during the past 2 years , the weakness stayed the same maybe got worse from time to time but I'm still able to function, at present I still have good strength like I can pass every test the documented puts me thru such as lifting your arms up and pushing down on them etc, however my arms get tired if I lift them or do some kind of strenuous activity, my hand also get tired and sore, my fingers get clumsy but I'm still able to write and grasp things , hold cups etc etc , only thing is they get tired and I need to rest them, legs and back is also pretty much In the same boat, got tired but no real weakness and no foot drop, can still drive and walk, my swallowing bothers me from time to time , sometimes I choke on food or saliva and wake up at night coughing but I think that's more likely caused by acid reflux and my weight issues , I haven't lost any weight and in fact gained on the belly and torso but my muscle mass has gone down, on my biceps especially but it's not the kind that is very noticeable , but it's my body so I do feel slight changes, I can still squat but get tired after a few, my speech is still ok not really slurred but I do get tired when I talk to much and my throat kinda feels tight at times the twitching comes and goes but less than before, get back pains, my breathing is off sometimes as well but that could be due to the weight, now that pretty much covers the major symptoms but I do get other symptoms on and off as well, to round up a conclusion , I had 4 Emg's in the past 3 years , the last one was around a year ago, i usually follow up with a neuron every 2 months for a physical exam and he hasn't noticed any major change yet, now is it ALS, well according to the docs they said nothing yet , do I have it ?? Well only God knows the answer to that one, but from everything I've read and learnt if I had ALS I would be dead by now and if I was one of those cases that lives longer I would be severely disabled by now, still the question does linger and I will keep thinking about it at the back of my mind but I'm a father now and becoming a father has made me realize that wasting time looking for things when I don't have them is worse than having a disease itself , you waste so much of your life worrying, if you have a disease it will show and when it does a doctor will be able to make a definite diagnosis, so until then let's enjoy life and hope for the best, if you guys have any feedback or advise let me know, p.s I checked for other diseases during this time as well such as MS, Lyme etc blood work, MRI and so on.
fely63 NowhereBoy
Posted
Mike,
I can totally relate and hope that you get your answers.
I have the exact symptoms, however; I know what most of my problems are because I've dealt with every doctor you can think of. Here is the hard part, getting the doctors to check for the right thing because these symptoms are hard to diagnose.
Short story to my health is that I beat getting out of a wheel chair, than the walker on my own because I lost all the muscle in my body (80%) and they finally said I had Rabdomyolisis. Two years later I beat cancer where I had 17% survival rate! This time I have no clue and it's the exact symptoms as you. Thus the reason I too am looking around to see what I can do. I do know that I have Lupus, Neuropathy, and Fibromyalgia with my bones disappearing in my spine and body. I go for a full body MRI as that is how they found my cancer before and since I haven't had one in 7 years and more apt to reoccur, they are finally doing something about it. There are days I cannot get out of bed and the only release from this pain is to sleep.
I wish I had it in me to fight again and hope God stays with me and now I will pray for everyone on this panel as well.
Fely
hulse NowhereBoy
Posted
Hi.I just noticed your post when searching online. Honest word for word you would think that I had written it.
I have all those feelings on a daily basis and like today I am restricted to bed..I don't know if you experience this .All my body tightens up including my jaw bone which gives me immediate head pain.As much as I try I can not relax my full body muscles.This is now 20 hours a day...
What condition do you expect your symptoms are related to?.
I was diagnosed with Fibromyalgia 9 years ago so mine could all be related to that.
You take care and be happy.
Susan.
kimberly93434 NowhereBoy
Posted