Concerning Calve Twitches: Worried

[paulrational]

Anyone know im still worried i have als my rippling calve twitches dont stop at all[3.5 years]they seem to be spreading and getting worse.they still look like bag of worms

 

[AlexAls23]

Normaly not at all.

But then again sometimes some time. If you havn't got any weakness yet then i guess you'll never get it. 5 Years average lifetime for limb onset, so i guess you aint got it.

Why do you ask after 3.5 years such a question. Has something changed (for example have the twitches changed maybe gotten worse or do you have any new symptoms)?

 

[paulrational]

That was such a quick reply,i am concerned because although i have no weakness ,in terms of strength,my left foot dosent feel right it sometimes feels like there is a heavy weight on top of it and it seems to tilt slightly to the centre when im walking it constantly twitches, but very small ones.I know i should trust the als specialist isaw[who told me she was one of u.ks top motor neuron desease specialist and director of research]but she wasnt interested in looking at the twitches she just did not seem to think i had the desease full stop,but my legs are crawling.Also i have random twitches around my body but they seem different in feel and appearance.

 

[darric1]

Although I am not a *LS expert, from everything I've read on this board is that you would of had weakness about 3 years ago if you've had twitching for 3.5 years. I think that is the last thing you need to worry about.

 

[GinniferLynne]

My twitches in my calves look totally different from all my other ones. They are perfectly described in that text that Bandersnatch_F copied.

Sometimes my twitches are incredibly bad, then they settle for a few days. Garym, who is a member, has periods of intense twitches that can go on for periods of time. He was told after a year to forget about ALS by a leading expert here in the states. Diego4Life, has had the appearance you describe for 10 years.

I do understand,however, the panic. After two years this March, anytime something "new" crops up, it sends me into a panic.

Ginny

 

[GinniferLynne]

Ohh, to answer your question;

From what I have READ in Priniciples of Neurology and the Cleveland Clinic Forum, quote "Fasciculations are almost NEVER the sole presenting feature of MND" and one doc at the Cleveland Clinic said that there is a possibility that IF someone does present with fascics, it is only for a FEW months (and this is rare) You can find these and other posts over at the forum.

Oh, one other thing, someone wrote in that they were twitching uncontrollably for 6 months and were worried (like us). The doc replied that with the AMOUNT of twitching the fellow was doing, he would have more than likely displayed a large muscle strength deficit by now.

Hope this helps answer your question.

G.