6 Months

[suebo]

Hello,
I have had widespread twitching for 6 months now. I twitch 24/7 in both feet--most I can feel some I can just see. Also 99% of the time in my calves. Then, the rest of my body thumps here and there constantly. I have no weakness or atrophy. I was having some cramping in my feet and sore hands but that has subsided for about 1 month. I saw a neuro about 5 months ago, he did an exam and said it is benign. He did not feel any need to do further testing. I have had blood work to look for thyroid and electrolytes--all normal. AFter 6 months of constant twitching with no further symptoms should I be able to safely say It is just benign? I am tired of worrying about it. LOL

 

[vmd]

It seems to me that fasciculations without weakness or atrophy is a good sign that it is benign, especially for such a length of time.

 

[CindyM]

Hi Suebo. I don't blame you-sometimes you just want to get on with life. Look at it this way: The MND will come-or not-regardless of whether or not you worry, change your lifestyle, take extra vitimins, or go on a trip around the world, or any number of things!

A year from now, you could be better, you could be the same, or you could be worse. Worry won't change any of it. That's my philsophy at least. Regards, Cindy

 

[Jamiet]

Your safe.

Rule is 3 months to see atrophy and weakness. So, if you don't have any atrophy / weakness after 6 mos, your clean.

 

[ltr]

Sorry you are feeling so crappy and scared. I do have to say, though, that I don't believe in the rules, guidelines or whatever you want to call them, for the MND's. There are far too many people on this forum who have NOT been consistent with these "rules". I think it is a crapshot. The researchers and scientists are doing their best to figure things out, but they just don't know. There are members of this forum who had twitching for years before they were diagnosed with als. There are members who had no atrophy or weakness and just twitching for a long time. And there are some who hardly had any twitching at all! There are many other syndromes/diseases that cause twitching also.

It is true that the lack of atrophy and weakness is a great sign, but get a good neuro and a good workup for everything that twitching can be attributed to. That way they may find something treatable BEFORE any damage is done. It is my personal opinion that twitching is not a benign thing. Something is causing the irritation and I really wish the docs would investigate their patient's who complain of them.

One thing you can do is really look hard at your lifestyle to see if there is something aggravating your system, i.e. pesticides, chemicals, certain foods or additives. That is probably the "benign" component to twitching. Others have figured things out from looking at these things. Also, vigorous exercise is probably a benign component and your body telling you to chill! Good luck~Leslie

 

[suebo]

Thanks for your responses. I am getting better about the worrying because of it being so long without progression. I feel great other than the twitching. Sometimes I wonder if more people twitch than what we are aware of. I have always been very sensitive to my body and what it is doing. I notice my husbands feet and calves twitch and he does not pay any attention. Do you think that we can become so aware of it that it causes us to twitch more?

 

[Al]

That is a definite yes. Watching twitching and the associated stress related to it can make it worse.
AL.

 

[Lorie]

I agree with Leslie

We are not Doctors,
I have to agree with Leslie. my brother Timothy had Twitching and Cramping seven years before the Doc. Suspected ALS three years ago. Two years ago DX. No one has the same onset experience. I definetly would not make a statement about how long it takes to get DX. I am experiencing the same symptoms Timothy had since Mar. 06. The Doc. said Peripheral Neuropathy and BFS. Same as Timothy's DX. before he started having atrophy. He lost total use of his arms in June 06. 9 years after symptoms began.
I go friday to a Specialist that researches underlying Neuromuscular Disorders. We do not have a familial history. I hope it is what they are saying and that it is pure coincidental.

Just stay tuned on what you are feeling, don't dwell on it. Just be careful.

Lorie