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starsing123

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I have been dealing with sensory issues for almost the past 2 years. I have been to a neurologists and he said that I am fine....no issues. I have had 2 EMGs in my right arm the most recent in Januay. The only thing he found was carpal tunnel. I was relieved, but then the twitching started. It has been going on for about the last 3-4 weeks. It happens everywhere...I tried to ignore it, until I saw the twitching. It used to be in my feet, calves, legs, shoulders, thumbs, and arms. But now it has seemed to settle in my left arm. It started yesterday after my primary care physician drew blood for blood work. I called my neurologists and went in for a visit. I told him that my concern was ALS. He said that he doesn't see it, but he will refer me to a neuro-muscular doctor.. That appointment is not until April. Does this sound like anything that anyone has experienced? I am still able to do everything. I feel weaker, but I can still do everything normal (open jars, hold my kids, drive, use keys, etc). I read the the post that said that muscle weakness happens all of a sudden...and that ALS is a disease about failing...not just things being more difficult. Does this mean that the weakness progresses fast or over night? Since I can physically see the twitching does this mean I should have weakness by now?I don't twitch much in my right arm, but would the EMG in January in my right arm have shown anything if this was ALS?
 
First read the sticky. That should answer all issues about muscle failure. It also says sensory issues are not presenting symptoms of ALS and that twitching is nonspecific. Read also the last posts on a recent thread by DalekSec and see what the world famous ALS specialist said about twitching. And finally yes an EMG will show signs before lower motor damage becomes symptomatic. But you have not really reported symptoms of ALS. Good luck
 
Thank you for your prompt reply. I will def go back and re-read the sticky and the post you suggested :)
 
If I search DalekSec will I get the post you are referring to?
 
Starsing123, if you didn't find it... here it is below, (I hope some other recent posters read it too.)

I just wanted to write an update of my today's visit with prof. Hardiman. Here is a brief overview:

Her assistant neurologist did the usual clinical examination and she didn't find anything concerning. I also showed her the "atrophy" in my right thenar eminence. She said that, according to her, this is no real atrophy, and that even if it is, some noticeable weakness or loss of dexterity would be present.

After my exam was done, prof. Hardiman arrived in the room. She was very nice and friendly. I first showed her my fasics in my calves (which are very aggressive) and she wasn't impressed at all. She just said: "Oh yes, benign fasciculations...". I also asked her about this "thenar atrophy". She made a quick strength test, and repeated what here assistant said. Then she added: "So I guess you are probably worried about MND? Well... you don't have it". (It was such a relief. to hear that from her mouth.) Then I asked her about contradictory information about fasics being a precursor of MND. Here is her answer (fellow twitches, please pay attention):
1. As you know, fasics are common in patients with MND. But we don't look for fascics to suspect MND, we look for weakness, atrophy or change in reflexes.
2. Fasics themselves are no real indicator of MND or any other disease.
3. In most cases, fasics are of benign origin.
4. I have NEVER had a patient with BFS who progressed in MND. And I had a lots of MND (and BFS) patients in my clinical practice.
5. In most cases PALS don't even notice fasics by themselves. Usually their spouse, or someone else is the first one who notice them.

Then she repeated once again that I don't have MND, but for my peace of mind, she will order another EMG within the next couple of weeks. I would also like to add tat in the meanwhile I called my neuromuscular specialist who made my last EMG. She a univeristy professor with more than 40 years of clinical experience. She almost repeated the same words as Prof. Hardiman did. She also added that my EMG was in fact within normal ranges for my age group (i.e. many people around my age have worse EMG results than mine).

At the end of this post, I would just like to add several thoughts:
1. You can have many strange and annoying symptoms, but that doesn't mean anything sinister is going on.
2. Never interpret your EMG results by yourselves (unless you are an expert).
3. Believe in your doctors, they are the ones who are experts and who know your complete clinical picture.
4. If, for some reason, you don't think your doctor is good enough, go to a proven specialist, even if you will have to wait a little bit longer.
5. There are many scary stories on the net, but you don't know who wrote them and which information are (incidentally of deliberately) missing. You just cannot know the complete story and therefore cannot identify with it.

I wish everybody all the best,
Dalek
 
Clearwater, that is a great post. It would be great to have it added to the sticky. In my reading I came across a figure of only 5% of PALS actually starting with twitching at onset. So many people on here jumping to ridiculous conclusions, all because of twitching. Who DOESN'T twitch at some time or another?
 
Nancy, that was not my post but a post from a member going by "Dalek."
 
Clearwater, Dalek's post is excellent! Great insight from a leading ALS expert. I agree that many recent posters should read it.
 
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