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pleasehelp

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Hi

I joined this forum last year then forced myself to stay away to try and control my anxiety. I received a very helpful response to my question about symptoms in my leg, a response that eased my mind considerably, as I could still do many of the things that were mentioned. IIRC they were related to gait and foot drop. I don't think I have foot drop. Apologies for not coming back on here.

Fast forward nearly a year later and I've got more symptoms that point to a possible diagnosis, and worsening of existing symptoms. I've seen a specialist (orthopaedic due to leg symptoms) who has put me on a waitlist for a scan with a neurologist here.

I have a question about fasciculations. Do they occur in the same part of the body as muscle weakness??

Short history: I have weakness and very definite atrophy in my right leg, which is considerably, visibly, smaller than my left leg. My calf appears almost nonexistent. Driving is difficult because of the pain and weakness and a short walk makes me feel as if I've run a marathon. Even at rest, I often feel as if I've just finished a strenuous weight-lifting workout (I used to do these things and this is an accurate description, no exaggeration). As far as I can tell my gait is normal. I can still walk upstairs, however, usually manage only a couple of steps before I need to stop and rest because my right leg feels too tired, and so very sore, literally as if I've just spent far too long on a seated leg-press machine and simply cannot manage another repetition. I have symptoms in my left leg too that are similar but nowhere near as severe. The pain is particularly bad after driving and is eased by lying on my stomach.

I have some muscle atrophy in my arms as well although it's hard to distinguish this from what might be general weight loss, as the shrinking muscles are evenly distributed and I'm thin anyway. (I simply can't put on weight no matter how hard I try, but, most of what I eat is fruit and veges so that could be related to my diet). I do have arm pain, however, I've had that for years and have been diagnosed, following nerve conduction tests years ago, with severe carpal tunnel in my left, moderate to severe my right. I've had surgery but it was unsuccessful as I still have tingling and pain.

Thank you for reading so far. My fasciculation question: I've had a problem with this in my right leg recently. It will go all throughout the day and night but with 'quiet' periods. However, for the past week or so my right shoulder blade has been going nonstop all day and all night. It's driving me insane. I had no pain there until today. Now I have what feels like constant twitching and the pain is pretty bad, as if I've pulled a muscle, but there was no pain when the twitching started. I'm just curious - when people talk of ALS and fasciculations, does this normally happen in the same location as the muscle atrophy and weakness? There's a little in my right leg but most of the twitching is in my shoulder blade.

I should add that I *am* prone to bad anxiety, however, I keep hypochondriasis in check and if anything I tend to under-report symptoms. (Eg when I reluctantly sought help for possible carpal tunnel on my left side, I was diagnosed with severe carpal tunnel, and also had it in my right side). The symptoms are real and not exaggerated although clearly stress and anxiety could be a factor. I'm stressed 24/7.

Any answers to the fasciculation question or insight would be greatly appreciated. I'm googling all over the place and it all points to ALS, however, I'm aware that google is going to tailor the results based on what I have searched for.

thank-you.
 

lgelb

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After enough nerves die, there will be atrophy and immobility since they are no longer sending signals to the affected muscles.

The key point is that most often the presenting symptom of ALS is the inability to use certain muscles at all, to which stair-climbing limitations in themselves don't quite equate. Thus, ALS goes to the bottom of a list of potential differential dx, such as referred pain from your carpal tunnel process to your shoulder and/or spine damage causing the problems with your R leg. A neuro and scan are a good next step.

Best,
Laurie
 

pleasehelp

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Thank you so much for taking the time to reply Laurie. I've wondered about there being multiple problems (carpal tunnel, some kind of spine problem). The first specialist I saw wasn't convinced that the tingling and pain in my arms were carpal tunnel. Fingers crossed he is wrong.

I had a question about relationship between atrophy and loss of function, which I will post on another thread for other forum users to see. Thanks again.
 

ShiftKicker

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Please help- it's best to ask anything in one thread. It makes it easier for those who might want to reply to see all of your posts in one place.
 

pleasehelp

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Qn re: "Failing vs feeling"

Hello. First, many thanks for taking the time to read, and apologies for what might seem a stupid question. I generally am having trouble understanding and hope somebody can shed some light.

My understanding of ALS is limited to what I've read on the internet and getting to know a relatively young man years ago who was in a special unit in hospital with ALS at the same time as my stepfather (who had a TBI). I still don't quite understand some things though. I understand that a 'key' symptom is that muscles stop working, certain actions can't be performed. I've seen this referred to on here and elsewhere, as 'failing not feeling'. Likewise, when I've asked around about my own symptoms (atrophy, muscle weakness and soreness, severe in one leg, not in the other, some fasciculations) I've been reassured by the knowledge that I can still use my leg muscles. For example, my right calf appears almost nonexistent, however, I can still do a calf raise.

This is what I don't quite understand. In contrast to the info that muscles simply stop working, I read anecdotes from people with ALS (or who have family members with ALS) that discuss weakness and atrophy as initial symptoms. To me, not at all qualified, that makes intuitive sense: Initially there could be signals still being sent to muscles so that some function remains, and, as nerves gradually die, muscles waste, and more and more function is lost. However, that doesn't fit with reading (quite widely) that muscles just stop working.

Can anyone shed light on this? Does function stop before atrophy, in conjunction with atrophy, or independent of? Do tests of reflexes indicate weakened signals, or, completely nonexistent ones?

I realise this sounds ignorant and thank you to anyone who took the time to read this far. But I genuinely am reading conflicting information and others too might be unsure. Thank-you.
 

ShiftKicker

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Mod note- Merged thread. Please continue posting in a single thread, thanks
 

pleasehelp

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Oh apologies; I'd posted a new thread before I saw your comment. Will remember next time.
 

WendyWooG

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Hi
My experience is that function stops before atrophy. The muscle wastes away because it is not being used. But our movements are controlled by more than one muscle and other muscles step in to compensate or we unconsciously adjust our way of doing things to accommodate.

I was asked why I was limping, I hadn't realised I was . My gait had changed unconsciously to adapt because I had foot drop and it wasn't until I tried to do a ballet class that I realised I couldn't go on tiptoe. My foot still worked generally I could wriggle it walk etc but I just could not make that one movement that enabled me to go on tiptoe on that leg. It wasn't until many months later that my doctors noted atrophy in my leg, there was none noticed in the early examinations.

It is so hard to explain, but I have tried for you I hope this helps.

Wendy
 

pleasehelp

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Many thanks for taking the time to reply Wendy. Your description makes perfect sense. I wonder if some things have stopped working but I'm compensating somehow so am still able to do a lot of things. It might explain the atrophy but what is still relatively good functioning. I can do most things but if I stand on my right leg and try to bend it, I'm unsteady and fall over, yet I can do things like squats, go up and down stairs, tiptoe, hop. It just hurts like hell as if I have been working out strenuously for hours. Combined with the bulbar symptoms (which could be anxiety for me) I'm worried. Anyway, I'm finally through the system and have a scan and appointment in less than two weeks now.

Your reply is greatly appreciated. I will post info from my appointment on here in case others can take something from it. Thanks again.
 
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