Old 09-07-2009, 04:40 AM #1
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Default Weakness sets in

Hi all,

I had a terrible weekend, was crying all the time and I don't even have my ALS diagnosed spoken out by a neuro. I don't know how I'm going to cope with it when he does.

After 22.5 months of widespread twitching, 24/7 in calves and random there is a twich in my left upper back that doesn't stop; a very fine localized twitch (I also got the random still going on). Now my left shoulder, where the twiching is is getting weaker. The top of the shoulder hurts. My arm feels heavy, like when i'm driving etc. The weakness started 5 days ago.

Almost 2 years long I went to visits neuro's and they all said it would be BFS and than this. I even went to one 15th august and he said I'm fine (didin't have the localized twitching and weakness yet) I have no other explanation for the localized twitching that is now followed by weakness. I'll see my neuro back at the end of the month.
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Old 09-07-2009, 04:53 AM #2
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Default Re: Weakness sets in

Bart1, I have BFS as you have and my arms sometimes feel weak for days. Its like when you awake from sleep and realize that you were sleeping over your arm - its like jelly. But after week it disappeared.
I can assure you that when I think about it, its worse. Many PALS here said that ALS weakness in arm usually begins with fine motoric skills (buttoning etc.). From the literature it usually goes from from hand, wrist to arm and shoulder. Starting in shoulder is rare.
And also after 5 days you cannot say its clinical weakness - let your neuro evaluate it and go to aboutbfs, Im sure they will tell you they have the same sometimes (percieved weakness).
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Old 09-07-2009, 04:57 AM #3
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Default Re: Weakness sets in

I'm really avoiding to sleep on that shoulder with the hope it would 'heal'
Blizna, I really think there is something really wrong. Twitching in back doesn't stop and shoulder hurts and arm gets weaker. How many other things can it be.
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Old 09-07-2009, 05:00 AM #4
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Default Re: Weakness sets in

I doubt you can avoid moving while sleeping.. and the pain is something that is not usually connected with ALS.
I know it could sound like too less chance - but hurting and weakening of arm and twitching - it really could be bulging disc or another problem in your neck spine. The pain is important since it points away from ALS.
Have they done MRI to see if there arent problems like that in your spinal cord region?
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Old 09-07-2009, 05:05 AM #5
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Default Re: Weakness sets in

I had a MRI done 2 years ago with the onset of the twichting, it was normal.
The pain is not very hard, just a little on top of the shoulder it's more the weakness, like when I'm driving etc that is to worry.
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Old 09-07-2009, 05:10 AM #6
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Default Re: Weakness sets in

I guess you should go for another one, two years is long time and slight change that they did not have to notice now can be more visible.
BTW, why dont you go to some neuro ER? 1 year ago, during a panic attack, I went to neuro ER in the midnight to get evaluation by neuro. I think that it could calm you down if you pass the clinical exam.
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Old 09-07-2009, 05:43 AM #7
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Default Re: Weakness sets in

As far as I know I don't think we have a neuro ER, just an ER but you have to have a doctors note to get in there.
I'm going to my GP tonight. Don't know why I'm going to him because he never has seen an ALS patient, doesn't know a thing about it. But what else can I do? I'm an emotional wreck right now. Almost 2 years of running to neuro's that tell me I'm fine and than this fine non stop twitch starts and my shoulder an arm gets weak...and than... still ALS? Just 3 weeks ago I had another clincial, should there have been some indication than?
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Old 09-07-2009, 06:00 AM #8
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Default Re: Weakness sets in

You have had clinical exam 3 weeks ago? Well then I really think such a sudden onset of weakness (which you have not clinically confirmed) is not ALS. Your reflexes was fine and so was your strenght tests, right? So I really dont think, after 2 years, you have something to worry about. I have had hot spots on my back too. Fine twitching, almost nonstop have I and for example LaurentCH on our foots too.
My arms sometimes feel very tired too, but it improves with the time unlike the ALS.
What about simple strenght tests - I think you can say its weakness only if you really cannot lift something that you can with the other arm.
EDIT: About neuro ER - those are usually in the hospitals ( I know from other countries in Europe) 24/7..I would wonder if you dont have any, since e.g. people with epilepsy etc. have to have some place to go to.
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Old 09-07-2009, 06:10 AM #9
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Default Re: Weakness sets in

Yes I had clinical 2 weeks ago BUT this non stop back twitching - fo 11 days now- started a week after the clinical. Now the twiches have also spreaded in the back but this one place keeps twicthing, followed by shoulder pain and weakness.
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Old 09-07-2009, 06:16 AM #10
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Default Re: Weakness sets in

Bart, I think what you say is weakness actually is not. Maybe Im wrong, but I doubt it would appear so quicky, after clinical that stated your reflexes and other signs normal. I suggest you to inform about neurologic ER in some larger hospital and go there just for reassurance.
PS: The feeling of heavy arm is exactly what I used to have. I felt it usually when brushing tooth or even combing! Like it was too quickly tired. Believe me, the more you think on it the worse it is! After I stopped paying attention to that I realize I dont experience it anymore. You can find my old post about that on this site, describing my arm is tired quickly with burning sensation (sometimes, like it was overused).
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Old 09-07-2009, 09:48 AM #11
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Default Re: Weakness sets in

Bart,

Maybe get a MRI of your shoulder, You could have torn something or have tendonitis in shoulder it would cause pain and make your arm weak.
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Old 09-07-2009, 10:01 AM #12
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Default Re: Weakness sets in

Bart, you could have frozen shoulder syndrome. It hangs around for years and does exactly what you are describing (hurts to sleep on it, developing weakness in arms, etc). It can also cause atrophy of shoulder muscles due to disuse.

I also have twitching 24/7 in my legs and twitch in various other body parts as well. I do not have ALS, just a differential diagnosed of PLS. Who knows, I may wind up having a simple case of BFCS compounded by bilateral frozen shoulder syndrome. This would be preferred.

My clinical exams point more towards PLS at this point (reflexes, babinski, etc.) but I'm taking vitamins and I'm sure they'll fix everything in time.

Keep your chin up, Bart! (unless you develop neck muscle weakness)

Were I you, I'd really look into the frozen shoulder/bfs combo as a possibility for the cause of your troubles. Its much kinder and gentler than ALS in a comforting sort of way.

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Old 09-07-2009, 10:07 AM #13
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Default Re: Weakness sets in

I don't think it's frozen shoulder s.
I have 24/7 in legs to, for almost two years.
Today the localized twitch in back spreaded, it's now over my whole back, ALL the time. Is this still with BFS? Seem highly unlikely.

I just tried to raise some dumbells above my head to see if my shoulder is really weak. I could still do it but that's probably not a good way to test strength?
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Old 09-08-2009, 02:16 PM #14
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Default Re: Weakness sets in

Quote:
Originally Posted by bart1 View Post
I just tried to raise some dumbells above my head to see if my shoulder is really weak. I could still do it but that's probably not a good way to test strength?
If you perceive your shoulder to be weak, I wouldn't recommend any self testing that involves the risk of dropping a dumbell on your own head.
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Old 09-08-2009, 03:33 PM #15
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Default Re: Weakness sets in

Bart--

Don't resign yourself to thinking you have ALS now because your arm feels/is weak. It sucks to put it like this, but time will tell. I've twitched for almost 3 years now and have had atrophy in my thenar muscle for almost two. I get weakness after exertion (so I suppose it's more accurately called fatigue and reduced stamina) and I've had 2 clean EMGs and one "borderline normal" EMG. I don't think I have ALS, but I'm trying to figure out what it is (with ALS as a possibility.) I was told it was BFS early on, but I know now that it is more complex than that. I think I have SOMETHING that isn't as benign as BFS and isn't as insidious as ALS.

Your anxiety has been sky high, and if you've been crying all weekend, it sounds like it's just as bad if not much worse. Go back to the doc if you think weakness has really started to set in, but don't forget all the things that the mind can do to you. I'm not saying you're imagining things at all-- I'm saying the body can manifest what you're worried about. Have it checked out by a doctor, try to relax and enjoy life. Whatever happens will happen; but as for right now it does not sound like you have ALS man. 3 years of twitching, clean clinical exams, clean EMGs? It's not impossible for you to have ALS, but it's highly unlikely.
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