A Update and FAO Bart

[chris_uk]

Hey All

Been a while since i posted on here and wanted to give an update and not be one of those people who just vanish after getting great help from everyone on here. As most of you will know i have really bad twitching in my calfs that go non stop and about 200+ a minute...anyways i went for a 6 monthly check up a few weeks a go with my Neuro and he did the nerve speed test first. Last time they were slow but this time they were much much better.

He said he has already ruled out ALS after last time and after doing a clinical on me he decided there was no need to do another EMG. He told me that he does not want to see me again and sent me on my way.

I wanted to thank everyone on here who for the past year have been amazing, you people have really helped me through this and what is even more amazing is that many of the people who have helped me actually suffer from this horrible disease and yet STILL found time to help me out, i just cant get my head round that..i am totally gob smaked that people like you can be this kind.

BART........the reason i have put you in the title is that me and you have so many of the same symptoms and i really truly believe that your going to be fine, yes i have no medical facts to back this up but if you twitch as bad as me and you say you do then form what i have learnt over the past year there is no way you would have EVER got a clean EMG if it was nasty.

I have been there mate, you dont believe what people tell you (Wright will back me up on this) i was obsessed i had ALS and no one could convince me i hadnt.

I know you say you Neuro has gave you suspected ALS, are you sure? or is this what you have convinced yourself he said...that might sound harsh but i dont mean it this way, not at all, your a friend and i am only telling you what i did when i was in your position.

anyways again a big thank you to all of you

Chris

[joelc]

Chris, I am very happy for that you don't have ALS. Thanks for coming back to tell us.

[Al]

Congratulations Chris. Glad to hear you have your life back.

AL.

[Blizna]

Chris, glad to hear from you again. Bart did get 2nd EMG and it was obviously not absolutely clean, when his neuro said that with combination of his clinical it could be something like ALS.
I hope Bart will be dxed with anything different than ALS, still think that 2 years is too much even for "twitching first" reports.

[chris_uk]

that was my point mate, was it not clean??? im sure Wright could really put his mind at rest if he just lets him...anyways dont want to talk about someone else on here as its not fair on them, just Bart if you read this, get your EMG results to Wright, i really think that if you do mate it will east your worries.....

Chris

[bart1]

Guys it's very nice to hear that you care about me but the neuro said there were abnormalities in my EMG and my clinical. I don't think Wright can solve anything here. I tried to get in touch with the neuro, secretary said he would ring back but until now he didn't.

There are other people on this forum that twitched very long before weakness, up to years, just like I did. Lori, Zenacher?, Mike, scaredofals and so on, so I really don't think I'm a big exception about the twitching thing.
In my feeling I think the neuro is right about suspecting ALS. I have pain in my left shoulder (& slight weakness)+ continuous small twitches in my left upper back, I think those are related and that there are not much other possibilities (can't think one) . Other people on this site (like Erica) reported to have shoulder pain as one of the first symptoms.
I also think when the neuro said suspected he already knows it for sure but just wants to give me some 'adjustment' time

[Blizna]

You are right that people do start with fasciculations, we all know that but the studies say this is usually "short-lived period" and 3 months are enough to see other signs.
About people here (I hope nobody will get upset when mentioning them again), I have read ZenArchers first post and he mentioned weakness in 10/2005, occassional twitching later. Lori could have familial form where its really more common to have fasciculations before other signs. Mike had localized twitching for nearly 2 years and scared of als...I dont know, strange story and she came back some time ago only to say how Wright was wrong...
I doubt your neuro thinks you have ALS for sure, it wont be "lege artis" approach to hide it from you, at least for legal reasons. He may suspect it, as you said, but only time will show.
I understand you have tough times but do not accept ALS dx until you have proven it. Hopefully your EMG will be just inconclusive.