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wright

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It's been awhile since I've posted a new thread on here. I've been too busy responding to other people's threads and trying to relieve their fears . . . and I'm also trying to stop worrying so much about my symptoms.
Well, this morning I woke-up with a new one: my thumb twitches inward toward my palm (it doesn't bend . . . just flexes at the joint where it meets the palm) from time to time. It also feels a bit stiff . . . all of this happened overnight. Yesterday, it felt just fine. I've looked at the thenar muscle very, very, very closely as it happens and I'm not seeing the muscle fasciculate at all (I've also looked at other muscles . . . including muscles in my forearm . . . and no fasics). My thumb simply moves/twitches. It also feels a little more uncomfortable right before it happens. It's not painful . . . but I know when it's about to move. Has anyone else experienced this? Those of you that have fasics in your hands: does it move your fingers and if so, can you see the fasics? Again, whatever is causing my thumb to move, isn't at all apparent to me.
For those of you that don't know, I started with symptoms just 2 months ago. I have mild weakness in my deltoid, biceps and forearms . . . with atrophy in all of those (I also have atrophy in my latissimus dorsi and some other back muscles). Initially I presented with weakness . . . followed by lots pain (it has since gotten better) . . . and then atrophy. The atrophy happened in less than a month . . . and I've lost about an 1 inch off of my upper arm (mainly biceps). Had normal MRI and clean EMG, although it was done less than a month after initial weakness (atrophy hadn't happened yet). So in less than 2 months, I have nearly my entire arm that has been affected . . . and now I'm getting a thumb twitch. I am now once again sick with worry.

P.S. One last thing: in all of my muscels that have atrophied, I don't really see any fasics at all. I do get fasics in other parts of my body from time to time, though . . . but not in my affected arm. Any thoughts?
 

ZenArcher

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First it doesn't matter if the EMG was done before you had atrophy. When mine was done my legs were as strong as ever but when that needle went in there it sounded like a fire fight from all the clicking/ticking whatever you want to call it. Secondly, atrophy from ALS doesn't happen that fast. It is a physical impossibility. Once the neuron dies the muscle no longer gets a signal and at that point begins to slowly fade away. Everything I've read says that atrophy usually won't even begin to show for 5 - 6 months following neuron death.

There's a lot of things it could be none of which either I nor anyone else here is qualified to say. If you're convinced something is wrong go back to the doc but based on what you've said here ALS wouldn't be a concern.
 

wright

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To Zen

Thank you for trying to alleviate my fears, Zen. I do have a neuro appointment scheduled for March 21 (I had made it prior to this new symptom, to see if they can figure out what the heck is going on with me). Yesterday I was fairly relaxed about things, but the mysterious, twitching thumb took me back to a very ugly place; today has been a very emotional day for me.
Zen, you said that muscle atrophy that quickly is unheard of with ALS: where did you read that? I've been scouring the internet, gathering as much information as I can. One thing I should mention: I think that about 1/2 inch of upper arm atrophy was due to weight loss. Since this all started, I have not eaten or slept very well, so I have lost over 10 pounds in the last two months. Therefore, I think that 1/2 inch of upper arm atrophy has been due to "true atrophy." Is that still too fast in a months time?
Anyone else with any other thoughts about my thread would be greatly appreciated. Take care all.
 

ZenArcher

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I can't find the 5 months now to save my life but I did find the following:

Some mild injuries recover quite quickly and spontaneously. Some may benefit from nerve graft surgery (typically at 3 to 6 months post trauma), the donor nerve being taken from the patient’s leg or other possible site and grafted in place of the damaged brachial plexus nerve(s). After nerve surgery the recovery time frame is months to possibly years, although denervated paralyzed muscle tissue will atrophy and may not be receptive to nerve impulses after a period of time. It should be emphasized that just as the many possible complex variations of the injury occur, so does the rate and extent of recovery for each individual patient. As a general rule the smaller fine control muscles in the hand are in the most danger of being lost as the regeneration of damaged nerves is slow, about 1 inch or 3 centimeters a month. Therefore, by the time any nerve recovery reaches the patient’s hand, atrophy may have resulted in lost function. Some injuries unfortunately do not respond to treatment and are so severe that they are permanent.

They are doing nerve graft surgery 3 - 6 months after injury. I got this from: http://www.ubpn.org/awareness/A2002adultinfo.html

Also realize that professional body builders lose inches and tens of pounds prior to shows all from fat and water weight. Look at it this way if you put your arm in a cast for a month do you expect to lose an inch? I broke my hip when I was 21 and after 5 months I'd almost lost an inch.

The thing to realize is that in ALS its not an all at once thing. If a neuron dies its next door neighbor sprouts new dendrites to try to take up the slack. Atrophy can only begin once all there aren't enough neurons to cover the muscle and at that point it starts in small portions.
 

sharonca

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I was diagnosed in 12/08 and was walking pretty well (with a cane) at that time and no problems wth my hands. Beginning about 3 weeks ago my thumbs started doing exactly what you said. Just painlessly stuck across my palm. I've had other fingers do a similar thing - just point down. I get scared everytime that they will stay that way but so far I'm OK. I'm hoping the Lithium therapy will work and this is as far as it will go. Seemed every week it is something else. Try not to freak - positive attitude helps - although there are days I'm up and days I'm not. Today is a down - so that gives me hope that tomorrow will be an up!

Sharonca
 

wright

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To Sharonca

My thumb doesn't get "stuck" . . . it moves / twitches . . . and just slightly. Again, I don't see any fasics in the thenar muscle at all . . . my thumb simply moves.
 

sharonca

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To Wright

Interesting. I don't have fasics in my hands - some twitching of fingers. But the thumbs laying against the palms for a minute or so is just weird feeling. Best to you for tomorrow.

Sharonca
 

wright

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Thanks for replying Sharon and thanks for the good wishes. I'm trying to calm down, but it's just difficult. My symptoms have hit me so fast and I keep reading and keep being told that it's an insidious disease that tends to start slowly and inconspicuously. There is absolutely nothing inconspicous about what has happened to me. My entire arm has been affected (except for what it seems my triceps), along with back muscles. I'm getting winging of my scapula too, so my serratus anterior muscle must be getting week. Has anyone else on here had their symptoms progress this fast? Again, it's been about 2 months and I have so many muscles affected . . . and all at about the same time. I'm still fully functional, though. My weakness does not keep me from doing the things I have to do on a daily basis . . . but none-the-less . . . my muscles are weaker and many have atrophied a bit.
 

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I had the same smptoms

Wright,
I had the same or similar symtoms. At first it was the hand, atrophy of the thenar muscle. Basically gone. Then I could not use that hand to do fine motor movements , then my fingers began to stick I didn;t think anything of it. My whole hand felt like it wanted to make an inward claw. (But it didn't) my wrist and my forearm muscle is way smaller than the other. I still have use of my arm I think my shoulder and my bicep are doing the work for the whole arm. I noticed the other day that my postier deltoid is going away along with twitching in my lats.(on the same side) My experience is that I am and have lost all control of my triceps. I can see the tendents moving in my hand. It's creepy. However I am holding on to the fact that I could have some kind of spine problem. :-? Even though just today all my slurring and walking funny ,exaustion seemed to get better.
What ever it is I hope the best for you. Try your hardest not to be too afraid that will only intensify your symptoms. I know better said than done. I'm freakin too
Best of luck
Robin
 

wright

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To Happy

How long did all of that take to occur? Was it gradual over a year's time . . . months . . . weeks?
 

happy

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The thenear muscle June 07 continued until now. loss of streight june to present. fingers sticking sept until now. loss of muscle june gradual until now. It has taken months all the symtoms I have have been there the severity has just gotten worst.
 

wright

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To Happy again

Thanks for the reply, Happy . . . that was kind of you.

A few more questions: Did the muscles go one at a time or all of them at the same time? Did you have any indications leading up to it all happening? You said it started in June: do you mean you first noticed your thenar muscle gone? If so, did you notice anything before that? Sorry for all of the questions, but I'm just trying to get me head around all of this.
 

happy

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It all started in june when I noticed that my neck muscles felt like I needed to stretch them. I had a strange sensation in my trapezious muscle. The next day I was in pain. Over the course of 7 days the pain subcided. But ove the course of about 3 weeks I began to notice that my arm was gradually weakening. It took about 2 months for the muscles in my hand to start to deteriate. I never really regained total use of my hand, I mean i could use it but not for fine motor skills it was basically like i had to grab things like a clamp. I could not use fingers the way i used to. Eventually it started to go into my forearm that took about 3 months even though i was going to PT the whole time I could not seem to rebuild the muscle. I was using 20 lbs on the tricep extension on the right arm and only 10 on the bad arm. not to mention I could not do any over head extensions. this went on until the entire time I would have strange sensations in my arm. Mainly my forearm and my hand. Then, 3 weeks ago it began gradually but I noticed the feeling again. Pins and needles and slowly my hand began to worsen again, but the thenar muscle which was already slowly going started to disapear completely. My bicep is not that noticable except to me. It is mainly my forearm and my hand. I do feel the twitching in my lats and my triceps, throughout the day. and a strange burning sensation in my hand on the opposite side of my thumb along with stiffness. I am also extremely tired all the time. I have had a bout of energy yesterday, but it did not last.
Sorry to go on so long I hope this helps.
 
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