Possible ALS - what to do?

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I'm a 25 year old male with little history of health issues. I feel quite certain that I have ALS and I was wondering if anyone had any kind advice to offer. Apologies for the long post but I feel like the onset of symptoms has been quite odd and perhaps worth sharing.

The story starts six weeks ago on the 18th April when I woke up with what I assume was some kind of virus (fever, nausea etc.) This lasted a couple of days during which I felt incredibly fatigued and had strange episodes of lightheadedness as if I'd skipped taking a breath. My tongue felt strangely fuzzy and my voice was strangely hoarse. On the second day my chest felt very tight, almost as if there were a band around it. These symptoms cleared after two days.

Over the next few days I noticed my left arm and leg felt somewhat achey. Because (admittedly) I'm a hypochondriac, I compared my left and right thigh and found that the left was smaller than the right by some margin. I started testing my strength by standing from a seated position on one leg - while I could do this with either leg it was more difficult with the left. After that, I started feeling a grumbling sensation around my left knee and soon was experiencing fairly constant fasciculations worming their way up and down both legs, or sometimes popping over them. There is sometimes a sensory aspect to these in that they can feel like something cold or warm dripping down my leg.

Not long after that I started getting single fire twitches all over my body (including back and face) which have gradually turned into florid ones. Lots of tiny ones on my left hand and foot along with vibrating sensations (some on the right also). There was a burning sensation in my left knee/thigh and it has gradually become stiffer to walk upon.

On the 23rd May I went to see my GP who did some basic strength and reflex tests which were fine. He examined my thighs and said that although the left was slimmer than the right, it was within a normal range. And fasciculations don't mean that much. He said he thought I was fine but to go back in three or four weeks if I thought anything had progressed.

Within the week after that appointment, I noticed some atrophy on my left foot (ball and arch) which has been getting progressively more sore to walk on without shoes. I also noticed some atrophy around my left thumb and palm in the split hand formation, and have been experiencing some burning pain. My left leg and arm have grown increasingly stiff and easily tired, and the right arm and leg are beginning to also. I feel as if my startle reflex is becoming exaggerated and I'm experiencing quite a lot of limb jerking at night.

On the 28th I started feeling a lump in my throat and upon looking in the mirror noticed that my soft palate had dropped; it has been doing so sporadically since then. My tongue seems fine although I can't judge if there are fasciculations (possibly upon sticking it out but not upon resting). The fuzzy tongue feeling from when I had the virus is also sporadically returning along with some hoarseness. I also noted some significant atrophy on the left side of my upper lip, although oddly I haven't experienced anything in the way of speech difficulties (that I have noticed) and can still pucker etc. I don't feel as if my tongue is any weaker.

This led me to take another visit to my GP on 30th May (a different one this time) who also carried out some strength and reflex tests which he said were fine. He did the Babinski test which elicited no response in either direction. He also took a look at my left hand and foot and didn't have much to say about them. I felt my foot fasciculating whilst he was looking but he said he couldn't see anything. He said there was nothing that would lead him to refer me to a neurologist on the NHS but that I could see one privately if I wanted leave of mind.

Since the appointment, I've noticed my breathing becoming more difficult after exercise (although not upon lying down). My left hip and shoulder are becoming stiff and sore, and I think my thigh has become thinner, although bizarrely my knee seems less sore. In these circumstances, do I sit it out until things get worse and the GP will refer me, or do I shell out for a private neurologist (which I don't really have the money for)? I'm struggling to think of what else I could say to the GP to get a referral.

I'm struggling with this situation because my parents and everyone else are convinced that it's just a case of health anxiety and it breaks my heart that they don't know what is really happening. I am an anxious person and in the past I've had a head jerk tic when stressed which I'm worried has contributed to this progression, and I'm experiencing immense feelings of guilt over that. I feel as if I won't get a referral to a neurologist until something fails completely and I'm not sure it's wise to wait for that.

When I think back, I've been a shallow breather (not much diaphragm use - feels stiff) and a clumsy swallower for many many years - since my teens, say. Can these things lie relatively dormant before a proliferation of symptoms is triggered later on? I've noticed extra pressure on my left knee for a while too.

Any informed input would be appreciated - thanks in advance.

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14 Replies

  • Posted

    Hi. I know what you have been through. Please go on facebook and join bfsrecovery group they will help you understand that you are going to be fine. Ask your go for anxiety medication. See if it helps. I was ill and developed fasciculations from waste down then all over for 7 to 8 months after a illness then I slowed in fasciculations until now I hardly get them anymore. I used supplements and food to boost my immune system. Eat plenty of good vegetables and no caffeine at all. I used alpha lipoic acid 600mg a day then vit d3 because all my labs were normal except this was deficient. I use r lipoic acid and eat Brazil nuts everyday. I would also suggest omega 3 and Gatorade. Drink at least one 20 ounce a day plus Epsom salt baths to help. If you see a improvement then it was all caused by the illness you suffered. I had what was believed mild guillan Barre. No clinical evidence because by the time doctors tgought it was it my body was healing itself.

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    • Posted

      Thanks so much for your suggestions, Angela. I was hoping that it might just be bfs but I'm pretty sure that I have atrophy on my left thumb/foot and I can feel that my left side is getting weaker. I also have tongue fasciculations and my soft palate feels low in my mouth. My mind has often played tricks on me in the past but I fear that these things are real now.

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  • Posted

    You don't have ALS, I insure you. I know a lot about ALS because of friend of mine. Your symptoms are not ALS symptoms but more FND. http://fndhope.org

    You should visit neurologist and may be psychiatrist. 

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    • Posted

      Maybe she has Gillian Barrie , just like you said if test are coming back normal . They didn’t find mine through any thing but spinal tap . The thing is they don’t do it till the go through many testing . Me and you I’m on my 3 year still have lots  of sand paper feeling numbness in my feet not even half of my legs. Really crazy my dr sent me to go back to nerology because told him . When I’m holding cell phone or so on. My feet are certain ways don’t feel it when I’m walking cause your putting pressure on them . Also a few weeks ago all my toe nails are turned really white . But I read could be due to fungus or due to I use to get pedicures or also minerals so I’d have to be tested. Have doctors appointment also as I stated I was sick phnemonia my lung was crushed due to it . Funny 3 other people I know same thing very arranged unless there was episode. Also I can’t run nor even go fast lately feel so tired a lot . I have diabetes since winter couldn’t take one of the medications so they put me in a fast relief meds . From being totally on the go for years I can only do things at a certain level I had it so bad . 1 year in hospital thank god im alive because I was paralyzed from feet to neck I had those tingling in my face so on but those 10 tens of deteriorating I was at least walking slow the dr at emergency kept saying all in my head 10 days going emergency 2 times a day pathetic. What’s wrong with these doctors . I was so lucky after being in life support I had the best hospital ask me if I’d like to be transferred with all best doctors nerologists and physio every day . I said yes transfer me . After year and half they closed my stupid file I also had blood clot on my lung So month after back in for two weeks . Every day so scary I had axiety depression due to all that . I talk to many people saying how could u not have axiety depression can under stand why . I’m dealing with lump on my between bladder liver found out grew little so back to getting mri . Some times I’m going why , why , why Gillian Barrie can be so on going depends on what stages you were at . Never took even a pull in my life still on 10 different ones . Every morning I look at them and say stop don’t take them but if I don’t could be a problem . And also more sick then ever always a roller coaster . You don’t think she might have Lyme? She should get checked for that to . I’m also going to see if I have it . Due to fatigue and tiredness. My niece has it that’s how she feels.
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    • Posted

      Thanks for this irinar - that website is helpful. It doesn't mention fasciculations though. Could they be caused by fnd? Also I feel as if my left side is getting progressively weak quite quickly.

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  • Posted

    Hi

    why is your GP not referring you that’s weird for him to refuse out right...so you have had these symptoms for 6/7..are the muscle twitching getting worse?u will need to persist with your GP if this is a viral thing it might need some time to settle down..it does seem like your nerves are involved as I’m not sure the burning pain is associated with ALS ,I also had a similar experience and 6 months later I’m still none the wiser after having multiple tests..keep us updated 

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    • Posted

      Thanks for responding Shak2340 - I think it's because there's nothing obvious to him on examination. I did fine in the strength tests and I suppose there's not currently that much difference between my left and right hands and feet that he wouldn't think had been there before. I also posted on the ALS forum and the people there said they couldn't see any obvious atrophy.

      I'd say the muscle twitching quickly became widespread (a couple of weeks maybe) and has been pretty constant since - I'm not sure I'd say it's got any worse though.

      I'm hoping that this is just something to do with the virus although I fear not! I hope you find some answers too.

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  • Posted

    Has he done mri , cat scan blood work think that’s a start . You can’t say you have it till you either go back to him or go to another doctor or go to emergency. 
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  • Posted

    All Doctors say that up sets me because we are human people it’s like ok we didn’t find this and that so guess what if any thing else occurs or your dying just come back . I’m so upset with my doctor right now went in there over 3 weeks ago he knows me so well I’m so direct now cause what they did to me at emergency now when I walk in emergency they know my history with every thing basically they start putting me on I’ve lol I also have diabetes, cops, so much issues with my ears throat , nose . I’m a walking Tom bomb very stressful really . I know how you feel but if I were u I’d as for Lyme test and spinal    Tap can’t hurt right ? Question any one in your family have ms, or Parkinson’s disease?
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    • Posted

      Sorry to hear about your experiences Caroline and no worries about the typo - no history of MS in the family although my great uncle had Parkinson's. A spinal tap would be a good idea although I've heard that they do hurt haha smile Interesting you mention Lyme - a few days before the virus I'd been for a walk in Epping forest. However, I don't think Lyme would develop in this way and so quickly? I've been for a walk today and my legs feel like jelly and my left hand feels very weak.

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    • Posted

      You know Hun then you should go in tell them demand it say I’m getting worse now you check me for Lyme 2 send me 2 labs 3) due the spinal tap well I was in and out yes it does but I badly felt they willl make sure ur numb of coarse tell them check u for ms , Parkinson’s but Definetly it’s either that spinal tap I have big feeling blood work for Lyme either one . Tell them hunny u want it all done tell them how u got sick you went in for walk in there . Any thing plz let me no I feel so sad for you I can imagine . Just like emergency with me I went 10 days 2 times a day and ambulance so terrible guess what ? Of coarse they admitted me how u send any one home being paralyzed and in and out next day life support I don’t want that for you ok hun . Let me know .
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