Possible ALS/MND? Extremely Worried..

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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.

 

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  • Posted

    Hi Nowhere Boy, you sound lost and confused. I have pins and needles over all my body 24/7. In the last month I have lost the strength in my ams and hands. The soles of my feet are very sore. Walking or standing I stumble, feel clumsy and out of ballance. I get angry easy,  confused when speeking, memory lose. Just found out I have Osteoarthritis all through my spine and further tests to be done and age is 55

    Neale.

  • Posted

    NowhereBoy, how have you been doing? Can you update us on your diagnosis?

    All the best.

  • Posted

    Hi there, I am glad you are not alone with the same symptoms. I have osteoarthritis through my whole body, severe pins and needles all over 24/7, sensation like something is crawling under the skin, very weak in both arms, out of ballance, stumbling and feel light headed when walking and standing, lack off sleep, go to bed feeling sore and wake up feeling worse, lose of mussle strenght, coordination is out of order, confused when ansering a person when having a conversation. Newrosergin meeting coming soon.
    • Posted

      Arthur I have almost identical symptoms the lightheadedness unsteadiness can't follow conversations ect and I don't have any answers no doctor can figure it out its so stressful...
    • Posted

      Hi Stroud. Also i have 6 bulging disks in my back crushing nerves. Went to see a nerosurgine in January 2016. At the time she could not find the cause of my symptoms because they were symptoms of diferant ilnesses. Had a MRI done on brain and spine. Found white mater in brain and bad osteoarthritis in my spine. Go to see nerosurgine in may. Getting bad cramps in hands and arms printing this. drives you crazy not nowing what you have. Do not worry you will have us to guide you through this. Cheers Arthur. 
    • Posted

      Thanks Arthur the only difference with me is I've had a MRI of brain and cervical spine but mine didn't show anything as far as I know but it was done about 2 years ago. My fear is it being ALS.
  • Posted

    I married a man with MND/ALS, and he's now had it 8 1/2 years.. he is one of those rare survivors who survive for up to ten years (1 in ten).  I was searching for head support solutions and stumbled upon this thread.  And just felt I wanted to put in a positive note... everyone is so terrified that they might have MND... it is of course, a horrendous diagnosis to receive... but after the shock and grief, and huge changes in personal circumstances, my husband started to have an incredible journey.  It's been very tough, but it's also been magical.  The incredible things and wonderful people who come into your life for example, the inner strength you find you have.  My husband never dreamt he'd meet the love of his life and get married for instance.  Yes it's a relentless condition, but it doesn't have to be an immediate death sentence.  Personally, I think it's pretty obvious when it's MND.  It started in one of my husband's hands.  There's no hiding it, when it strikes.  But if you do draw the short straw, there is LOTS they can do now to maintain quality of life, and extend life if that's what you want.  If you get a fast acting type of MND, then there is a positive side, you'll probably not have to endure almost total paralysis which generally occurs in those who survive the longest... if you survive for ages, but have to deal with severe paralysis.. then be grateful for the gift of time. That's what I always say to myself anyway.  We were given the gift of time, but it came at a price. And believe that the help is out there for you, when you need it.  We have had so much unexpected help.  Keep pushing for answers and the help you need until you get it.  If you still have not had a diagnosis, find a neurologist who specialises in MND, it can take 1/3 of the time of a person's prognosis to get a diagnosis.  How ridiculous is that.  
  • Posted

    Ive been following this discussion...NowhereBoy, how are you getting on?  Have you had some answers?
  • Posted

    hi let me help you.you have ATOS. artery in your neck is pinchng off the blood to your brain,causing mini stroke like symptoms.i have this and am waiting to be diagnosised with it.the best dr is dr donahue in boston mass.

    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.

  • 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

  • Posted

    Hi, Mike this is Ellen. I read your letter from top to bottom, thank you for writing I know what you are experiencing, although you do not have any diagnose yet most of the symptoms you are experiencing is very similar to ALS, it may be a different disease though.

     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

  • Posted

    It could also be Lymes disease. Please be tested by a Lyme literate dr only. This disease mimics so many others and cause all of these symptoms
  • Posted

    Sorry to hear about your suspected neuro issue.  I understand your anxiety and worry that goes along with your concerns; I had a giant aneurysm and not knowing what to do about it, is the worse.  Please find yourself an excellent neuromuscular specialist.  Has anyone suggested you having a spinal tap (lumbar puncture)?  Please eat healthy avoiding food that might cause body inflammation, no alcohol and get lots of rest, avoid stress and have fun and laugh.  I hope you feel better!

     

  • Posted

    When you're talking do you get short of breath also do you loose a lot of focus?

    • Posted

      yes, there are many times lose of focus.

      EllenH.

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