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Possible ALS/MND? Extremely Worried..

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NowhereBoy
NowhereBoy

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

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  • rejaul20713
    rejaul20713 NowhereBoy

    Posted

    Guys I had a lot of the symptoms everyone's been discussing in this thread. I spent a lot on medicines blood test and scans but nothing really helped. This month I started on an alternative medication homoeopathy. I took phosphorus 30c and I am relieved of 80% of the symptoms. I sleep better. I feel my old self again. I think you guys should try a good homoeopath doctor.
  • denise40651
    denise40651 NowhereBoy

    Posted

    Hi

    I am writing to say that i have a very rare Neurological condition (less than one in a million) called Moersch-Woltman Syndrome or Stiff Person Syndrome due to its rareity not all of Neurologists have seen it or know the symptoms, a special blood test confirms it, it is also an auto-immune condition,  It could be something to ask about the Neuro you have seen may not know of it.  If I knew what area of the country you lived eg: North, South, East or or Middle I could try and find a Neuro who knows about it for you to be re-referred to for tests. People with this condition vary in the way it presents, but some of your symptoms I can relate to, too many to write down.  I not saying this is what it is but its worth looking into.  If you would like to check the symptoms of SPS there isa website that is run by a support group you will find info there at www.smssupportgroup.co.uk I wish you well and please if i can be of further help let me know.

  • NowhereBoy
    NowhereBoy

    Posted

    Hi all, I can't be sure if anyones still following this thread but I just thought I'd check back in with a quick update. I've seen every comment on here and I thank you all for your advice, I will reply to each comment personally in the next couple of days but for now I'm assuming that by replying to my own post that everyone will be able to see it.

    Anyway, obviously it's been a while since I posted this and since my initial symptoms began, and I'm sorry (and infuriated) to say that I'm no closer to getting a diagnosis, nor have I been given any indication from any professional as to what it even could be.

    My symptoms have worsened and I now have quite a few new ones, but before I mention those I'll tell you about the various tests I've undergone.

    I did indeed see a neurologist (this was back in september, I think, of last year), he asked me about my symptoms and performed some basic clinical testing (reflexes, muscle strength,..) and I was sent for an MRI (whick took 2 months by the way).

    MRI: Normal. I expected this.

    I was then sent for an EMG test. I both craved and feared this test, as I knew that on the one hand, it would almost certainly pick up on any motor neurone damage, on the other..well, nobody likes bad news, especially that kind.

    I went for my EMG in january. I underwent a nerve conduction study ( which is the first part, not the actual emg testing) and was told that it was normal. And then came the EMG itself and, I'm embarrassed and disgusted to tell you that I could not complete this test. I can't quite understand what happened myself, the doctor inserted the first two needles and then, out of nowhere, my mind and body decided to panic. BIG TIME. I am not a man who is afraid of pain, truth be told it wasn't in the slightest bit painful, I can take pain. But for some reason I went light headed, and the room seemed to go white, and the nausea..christ.

    As I mentioned in my original post, I do suffer anxiety. And it seems that this time (when it mattered most for gods sake) anxiety got the better of me. I explained to the doctor that I wanted the results of this test today and was adamant that I was able to carry on, much to her surprise. Another needle was inserted, and much to my surprise..turns out I wasn't able to carry on.

    So basically I failed the golden test, the one that I KNOW would've given me some answers. I will take this test again, but it means another huge wait, and the added pressure of knowing that I cant let what happened last time, happen again. (And my minds a right b*stard, It'll remind me just as that first needle goes in..) So obviously I got no answers from that.

    EMG: Wimped out.

    My most recent testing, today in fact, was a visit to the ENT clinic, to see if they might be able to figure out why I'm so nasal, hoarse, and if its causing my speech difficulties. So I went. Had a camera up my nose, down my throat, didn't flinch once by the way would you believe, and...NOPE. Nothing to be found here, rhinitis, actually, which I was told was a common problem but in no way would that cause my speech/hoarseness/nasal problems. Got a nasal spray. Woohoo.

    I am now waiting to be seen by the neurologist again, I have an appointment infact, 13th april, the day before my birthday, so I'll let you all know how it goes, if anyone is remotely interested. I'm sorry if I'm coming across a bit sharp by the way, I've just had about enough now, and recounting the things I've had done knowing that my symptoms remain, nay, have worsened, really ticks me off, I don't know..

    I know I said I'd talk about my symptoms and how they've progressed, but I've just realized how much I've rambled on, and it's just dawned on me that none of you may still be following this and this could be reaching no-one.

    Mike.

    • laura61183
      laura61183 NowhereBoy

      Posted

      I'm still here 😊😊😊😊😊 keep pushing, I'm sure you'll get the answers your looking for eventually !!
    • angie29533
      angie29533 NowhereBoy

      Posted

      Hello we are still following. This is actually my first time replying to any site or blog. I have been reading about your symptoms and others. Please know, you certainly are not alone. I am going through the same thing. I think we end up here because people dont understand what we feel or go through. All the test, symtoms, doctors, medicines and months sometimes years before they find anything. Gets annoying!! I myself started in october 2014 getting off balance, not thinking right. Then in november started getting numbing and tingling in hands and feet. December got cramping in hands and feet. I coudnt lift things with my hands. Ive had mri, nerve conduction a few, emg, eeg the head one. All test nothing. When i got my nerve conduction test, the next day my whole left side went numb for about a week. No stroke. Now being sent to neuro muscular doctor. They said it would be months, when i saw my neurologist the other day. I told him my left hand is deforming, like playing the piano, It's in the right hand too but not often. Very painful. I also have foot drop on left foot. It either drags or i cant lift it. Recently my mouth and tongue are numb a few times a day. Also about a month ago, i started having problems walking anywhere far, my spine, neck, hips, hurt. Left foot is always numb on and off. I just got a call the neuro muscular dr will see me march. She said dr needs to examine me soon. Thank god. Sorry this is so long, wanted to get everything in. P.s.its people like me who feel alone and scared and read all the post and dont know whats happening to them. We can talk about it, read about it and someone else is understanding or going through the same thing.
    • NowhereBoy
      NowhereBoy angie29533

      Posted

      Hi Angie, sorry for the late reply, I guess you will have seen the doctor again by now, If so, let me know how it went, just send me a private message. I'm having a hard time keeping up with everyone on here, I feel obliged to reply to everyone, and I will, but it's overwhelming for me at times with all thats going on. I see peoples messages and say to myself, 'I'll reply tomorrow', and just keep putting it off, until before I know it, a couple of months have gone by. It's not intentional.
  • leif14903
    leif14903 NowhereBoy

    Posted

    Still here, NoWhereBoy. I've been keeping up with the thread. I'll leave a more detailed reply another time, as I gtg to work shortly. Just wanted you to know you're not alone. There are a lot of people rooting for you.
  • ShadowX.
    ShadowX. NowhereBoy

    Posted

    Hey Mike. I have the same symptoms and I think I can offer you some help. I panicked like you and thought ALS but turns out I had Chronic Fatigue Syndrome. Look into it. It might make you feel calmer.
  • patricia95066
    patricia95066 NowhereBoy

    Posted

    Hi NowhereBoy. I know sympathy is nice but not helpful. I have been going this same thing for the past year. The only diagnosis so far was lymes desease, antibiotics seemed to have cleared up in last blood test. I have seen several specialists since last May when I had an episode while eating on my deck. Extreme vomiting, inability to stand and left ear closing completely and still have no hearing. I also have looked up everything imaginable and still no help. I hope you get answers and healing. Pat.
    • NowhereBoy
      NowhereBoy patricia95066

      Posted

      Hi pat, sorry for the late reply, as I find myself saying a lot on here, I just get caught up with things, you know? Yes I'm familiar with Lyme disease, but I don't think thats a possibilty in my case. I certainly have some of the symptoms but my blood tests (although the last one was around a year ago) came back normal for kinase which is usually elevated in patients with Lyme. Also, I don't live in, nor have I been to, a rural area in the last couple of years, where I might have been bitten by a tick, and I would have noticed had i been. Anyway, how are your symptoms now? Did it turn out to be jsut Lyme?
  • michelle26845
    michelle26845 NowhereBoy

    Posted

    Hi there,

    I have been having strange symtoms also for the past 3 months or so too. It started with numbness in a patch on my arm then changed too tingling fingers. Now after a few months I have intermitant tingling in my hands, when I walk I feel unsteady and dizzy. I also feel like I can't quite articulate my words sometimes and feel like i'm slurring.

    The past 3-4 weeks have been horrible because I have had some new symptoms which have occured 3 or 4 times now at random one being in the middle of Morrisons! My arm starts tingling badly and goes dead as if i've slept on it, it goes really weak like I can no longer lift it and I feel generaly horrid, my head, side of my neck and shoulder all tingling too and the only thing I can do is lay down until it passes.

    Now I have suffered from Anxiety and panic attacks for years and I know what symptoms I get when I am having an attack but this recently has been totally different and really worrying.

    I have been to see a Neurologist who did basic tests all to which were fine. He is convinced that it is stress and anxiety related. So anyway my doctor has prescribed me some beta blockers for the Anxiety which seem to help somewhat but for the most part I still feel tingling in my hands and my right arm is still quite weak and I get extremely tired when doing anything really.

    I do find though that my symptoms get worse when I get paniky so maybe these are Anxiety related.

    A few friends of mine have also suggested getting my vitamin B12 levels checked as the sympoms are like that of a Vit D deficiency.

    Anyway just thought I would pop up being as we are all in the same worrying boat of not knowing but just coping day to day.

    Let me know how you get on x

  • DQDiamond18
    DQDiamond18 NowhereBoy

    Posted

    I'm 100% exactly the same with no answers. Though getting closer I think. I have 2 kids and 2 dogs, stay at home mom because I can't work and feel like this. Feels like your body is dying on you.
  • DQDiamond18
    DQDiamond18 NowhereBoy

    Posted

    27 year old female. I'm 100% exactly the same with no answers. Though getting closer I think. I have 2 kids and 2 dogs, stay at home mom because I can't work and feel like this. Feels like your body is dying on you. Weird how we all feel this way and we're the same age area.
    • NowhereBoy
      NowhereBoy DQDiamond18

      Posted

      Well, first of all, sorry to hear that you're suffering similar symptoms, if they are anything like what I'm experiencing then it truly is debilitating. I also have children, four infact, my eldest daughter lives with her mum and my newborn daughter and two stepkids live with me and my partner, so luckily shes on hand to tend to thier needs when I simply cant, as awful as that sounds. I honestly don't know how I would cope if I were raising them alone, I raised my eldest on my own for quite a few years and that was challenging enough without any of this. I can't work either, and at 28 I feel that lifes just passing me by, but it's just not an option at the minute, I can barely lift myself out of the bath the way things have gotten up to now (my symptoms have worsened A LOT since my original post). Anyway, I hope you are getting closer to a diagnosis, me, I'm back to square one.
    • audaerin
      audaerin NowhereBoy

      Posted

      Hi, I am not certain what triggers an email to you but I wanted to be sure that you knew that I left you a reply and wanted to get into contact with you. Thank you.
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