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Re: New twitcher....

PostPosted: January 30th, 2014, 6:18 am
by Antologia
So, the neuro called today...

What she said was the following:

They do think most about BFS, but she confirmed again that she could not diagnose it at this point. She offered me some medication, I do not know the name of it, but it was something to relieve the cramps, not the twitching. She told me I would get very sleepy because of that medication and I could not drive in my car, so I will not take this medication.

I asked her to tell me a percentage to rule out ALS. She said it is 95% sure I do not have ALS. Because mostly when you have widespread twitching like I have, your muscles show problems on the EMG, even if you don't have weakness yet. But... in 5% of the (rare) cases you don't, so that is why she could not rule this out for 100%. However she did mention that in this hospital, they never had anyone with twitching, a clean EMG and then later on ALS.

I do not get any other test at this point, mostly because my CK level was normal. Then they don't expect to find anything when they do more tests. In 6 months, I go back and we test CK level again. If that is okay, and I'm okay (no changes, only twitching and cramps), we do nothing. If I feel insecure, there are changes or my CK level is not okay then, they might do another EMG.

For now, she and her team, mostly think this is BFS. She says it's very common in people my age, much more common then ALS at my age. And because you can become a hundred years old with this syndrome, they don't do a lot of studies about BFS. Sometimes the twitching will go away, but mostly it stays the rest of your life.

So... I need to relax now and go on with my life. Which I will.

Thanks for all your support. If anything changes, I will let you know.

Re: New twitcher....

PostPosted: January 30th, 2014, 12:12 pm
by RGB
That's good news, I am sure that the ALS percentage is perhaps a bit misleading though (although they are of course right to be honest about not being able to exclude it 100%).

If they have never had a case at that hospital and the incidence is 5% then that suggests either they don't see a lot of twitching (<20)* or the percentage is a bit too high and just shorthand for "still theoretically possible".

I was told pre-EMG that there was a 10% chance of it being ALS (we have similar presentations) so again that suggests some diverging views of what the likelihoods are.

I don't think I am offering false-hope with either of the above points but can sense you are the kind of person who is able to deal with the very low level of risk. At worst, you are 95% certain of having a completely benign condition. Happy days :)


* There is no need for any stats-geeks to point out the assumptions in this figure. It's good enough for our purposes!

Re: New twitcher....

PostPosted: February 10th, 2014, 10:56 am
by Antologia
I have no clue if there are many twitchers in this hospital. I live in a big city, but it is not an University hospital. The neuro said she did see a lot of people with twitching, but those stories were different then mine, I guess, because she talked about people (like medical students) who had a twitch now and then. I twitch 24/7 widespread, and it never stops.

Well, I try to get if out of my mind, but sometimes it's hard because the twitching is there a lot, like today. I try to be realistic like you say, and believe I have 95% of having a very innocent syndrome. Time will tell. Hope I can write posts here in about 2 years or something :)

Good luck!

Re: New twitcher....

PostPosted: February 10th, 2014, 7:29 pm
by Seepi27
Antologia wrote:Hello, I'm new here. I've been experiencing twitching everywhere 24/7 since may 2013. At first wait and see, but in october went to the neuro. He didn't find anything with his exam, but did order an EMG and bloodtest. I was on a waiting list for that, half January I will go for the EMG. I'm pretty nervous about ALS, as most people are at first. Neuro mentioned BFS. I'm not sure.

I also have an increase of saliva and sometimes troubles swallowing. But that's all....

I'm glad to find this forum, because on the ALS forum people get tired of us twitchers without a diagnose. They don't understand our fears....

I think you're singularly the most stupid, selfish person ever to post on this forum. People on the ALs forums don't understand our fears??? Maybe because they're too preoccupied with their own death sentences. Ever thought of that?

As for your other posts, full as they are of unsubstantiated assertions, generalisations, undigested and regurgitated half-truths, and scaremongering for absolutely no good reason, you take this year's Darwin Award for unalloyed, unashamed, congenital stupidity.


Re: New twitcher....Update

PostPosted: May 3rd, 2014, 3:16 pm
by Antologia
Last time I was here was in February. Didn't happen much since, but just wanted to give an update on my situation, because it might be helpful for other twitchers. Still twitching really bad, but nothing else happens to make me feel anxious. The twitching is really annoying me from time to time, especially the thought that this will never stop for the rest of my life... It's almost a year now (23th of May) since this started. It's just that you can't stop thinking about it, because it is happening every 3 seconds. Will give an update in a few months or so. Good luck all!