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
arthur21358 NowhereBoy
Posted
Neale.
xou25 NowhereBoy
Posted
All the best.
arthur21358 NowhereBoy
Posted
Stroud5393 arthur21358
Posted
arthur21358 Stroud5393
Posted
Stroud5393 arthur21358
Posted
joML NowhereBoy
Posted
grace50435 NowhereBoy
Posted
angela_66690 NowhereBoy
Posted
well im pretty sure you have it anyways.theres a group on Facebook called thoriatic outlet syndrome.join us they are a lot of help.i hope i spelled it right.
anyways it is hard to get a lot of drs to diagnosis this cause most want to deny it.most of us have to travel thousand miles to see the correct doctor for a diagnosis and surgery for it.hope i helpped you.
melissa421980 NowhereBoy
Posted
I would call the clinic that you are supposed to be getting into & tell them that you need to be seen asap. Have you ever had a stroke or infarction? Also just one new medication can cause stuff like this. I know that you are worried but the Internet is the worst place to just type in your symptoms because they mimic so many things that could be wrong with you. Push the doctors to get you in asap. Please let me know what you find out?
Melissa Hay RN/PA
Jeffrey Hay MD
ellenh NowhereBoy
Posted
I lost my husband to ALS about 4 years ago his case was really fast just in a matter of 7 months. It is hard to see people suferring from this disease or in your case the syptoms that you are having, and I believe it is hard for you, I could feel it also because for some unfortunate reason I am experiencing the same symptoms mentioned here. I want to cry everyday, but I should show some toughness because I have 2 daughters, one of them live with me and only 13 years old. ALS is not trasferrable, I know for sure. I have to go to different doctors to get tested, last Jan I went to neurologist, last month I was with my orthopedic doctor (I also have oestoarthritis on my neck), I have your sypmtoms and I cannot wait to know what will be my diagnose. Yesterday I had a result of positive ANA maybe an indication that I am really sick. Orthopedic doctor postponed my carpal tunnel surgery on both hands and instead schedued me yesterday for spinal cord MRI.
I am prepared for the worse. I hope you can be strong, I will pray for you.
Ellen
julia89440 NowhereBoy
Posted
ruth52049 NowhereBoy
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nathan777 NowhereBoy
Posted
When you're talking do you get short of breath also do you loose a lot of focus?
ellenh nathan777
Posted
EllenH.