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ktmj

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OK, I am opening myself up here. Yes, I am worried but trying to maintain a positive and open attitude.

Over the past several months, I have been experiencing the following symptoms - I'll try to put them in order of when they appeared...

Generalized muscle twitching
Head/face tightness (spasms? the muscles do move at times)
Arms/legs shaking under exertion
Leg spasms that spasm the length of the leg
Shoulder/arm/chest/back spasms
Neck muscle tightness / spasm
Muscle fatigue and shaking with most physical activities (mainly arms)
Some weakness in hands and arms (not measured clinically)

No problems with speech or swallowing, but very tight lip and jaw muscles at times

I have been watching my muscles obviously, and have noticed decrease in bulk in several, including quads, hamstrings, biceps, and the thumb muscles (both the "pad" and the muscle between thumb and first finger) during the entire period.

I know ASL presents in many ways, but is it typical at all for it to be a generalized onset prior to diagnosed where atrophy could be fairly equal from arm to arm and leg to leg? If not, anything at all that could mimic what is going on here?

My local neuro has no answer after a visit month ago and a "clean" EMG of 11 muscles in right leg and arm. Visiting a neuromuscular specialist in November.

Please no bashing - and I certainly am trying to be respectful of you with a diagnosed. I'm most interested in "general" presentation - is that common at all?

Thanks so much for any input.
 

Al

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Hi ktmj. We are not normally in the "bashing" business. You have to be real "special " to get that. That being said I'd have to say that your symptoms don't sound like ALS. It doesn't usually start all over in a short period of time. How many months has this been going on?

AL.
 

ZenArcher

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ALS picks a spot to begin and focuses there initially. As time goes on it will spread either across or up/down. Onset as you describe with everything suddenly affected is not indicative of ALS. As far as what it could be there are many things none of which I'm qualified to comment on. With a clean EMG it isn't ALS which is a good thing. Let the docs do their job and they'll figure it out.
 

ktmj

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Hi ktmj. We are not normally in the "bashing" business. You have to be real "special " to get that. That being said I'd have to say that your symptoms don't sound like ALS. It doesn't usually start all over in a short period of time. How many months has this been going on?

AL.

Thanks guys.

Everything but the twitching has been gradually happening over about 6 months. I've twitched for years and that is something I just lived with without second thought. I'm familiar with BFS - it is not twitching concerning me.

Weakness, shaking, spasms and cramps, and atrophy concern me.

And, I forgot to mention fine motor skills in my hands are sometimes a problem.
 

wright

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You just got great answers from two of the smartest and well respected people on this forum and I agree with them: if what you say about your symptoms and progression is true and you weren't completely unaware of your body prior to all of this happening, then it is not indicative of ALS. The clean EMG points away from ALS too.

You ask for an alternative opinion: if you have muscle atrophy with a clean EMG, that is classic for a neuropathy. Your nerves were clipped and then it stopped, which is why no PSW's or fibs were seen in your EMG (PSW's and fibs are indicative of active denervation).

If your neuro would have EMG'd you a few weeks after initial weakness, then there is a good chance your EMG would have had PSW's and fibs present (i.e. while your nerves were being clipped). As soon as the muscles are reinnervated, the PSW's and fibs will disappear. Only when the disease process is progressive (such as what you see with ALS for example) will the PSW's and fibs persist.

If you do have some type of a neuropathy, if you get another EMG about 6 months after noticing symptoms (I'm not sure when that would be in your case), it would show larger than normal motor unit potentials (MUP's) which would indicate reinnervation. It simply takes some time for the large MUP's to develop and become detectable by the EMG. With ALS (at least in the beginning and intermediate stages), you will have PSW's, fibs and large MUP's.

This is just one possibility, but in my opinion, a plausible one. I could sit here and give you more but it would be all pure speculation (just as the neuropathy scenario is). Let your neuro follow you and I'm sure he/she will give you more definitive answers in time.
 
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awieleba

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Ktmj

Bravo! You really summed it all up in a short and to the point matter. I felt like I was reading about myself, but I post such long winded threads that I am sure it all gets lost. I dont know if you do or dont have this, but I have all that you said. It started like that with me but I was pregant so it is hard to say. I got it all down to the face tightness and crampy thing. I have the loss of bulk, in all the same area's expect biceps. My worst area is my thumb pad and in between thumb and finger and it also aches like H*** in that area. That is what bothers me more than twitching. If all I had was twitching, ok. I guess I wanted to say that I have all this for almost 11 months. And I have been told no als, I have had a clean emg (very early into this) and a muscle biopsy, along with a indepth neuro exam at a teaching hospital at als clinic. I was told no als. I feel good about that, but have some linger fears. I want to try to reassure you because while I am NO expert, I have ALL that you say and I have had all the tests and have been cleared as of now.

I am having a repeat emg, wich would be 6 months after the REAL (not twitching) symptoms and atrophy started, so it will be interesting to see.

I wish you the best and I understand your concerns. Try not stress, I know it is hard but believe me if I can then anyone can.

and ps. my twitching as of the past 2 weeks has gooten better by 75%. I hope it lasts. It is only in my feet and legs at night or morning now
 

ktmj

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OK, I got a copy of my "clean" EMG and that is exactly what the summary says. For each muscle there are four columns. The FIB/POS WAVE and FASCIC columns have nothing but dashes - I'm assuming none were recorded?

The INSERT ACTIVITY and INTER PATTERN columns have nothing but NL's in them - does that mean normal? I'm assuming most of this was keyed by the neurologist instead of generated by the machine.

The NCV page obviously has a lot of measurements, speeds, etc. that I can't decipher, but the summary says the "distal motor and sensory latencies, amplitudes, motor and sensory NCV's and F-waves are well within normal limits".

Shouldn't even a neuropathy show some abnormality somewhere?
 

wright

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Your EMG was completely clean (NL does mean normal by the way).

As I said in my other post: the EMG can be clean if you have reinnervated and the EMG was done too early to show the reinnervation (again, that would be indicated by larger than normal MUP's).

The scenario I painted was one of many, many possibilities so you might have a condition other than a neuropathy.

Sit tight and let the neuro at your next appointment evaluate you. Do your best to remain calm until that time.
 
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