Very strong abdominal twitches

Information about how to manage or reduce the severity of BFS symptoms

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Re: Very strong abdominal twitches

Postby wjjw on October 19th, 2012, 7:07 am

jerry2: If my comments directed at TwitchyDoc offended you, then you have have my apologies. You're a good guy, and I don't want you to get the wrong idea (explained below). I'm not sure what you're saying about "and now you are *beep* about my [your] post". I don't even know what post you're talking about.

twitcherHH: In 1298 posts and countless PMs, chats, and even phone calls with people here, I have never told anyone what they can talk about. I only suggest that if they want to discuss ALS, twitching without weakness, clinical studies, or stories from ALS forums that they make sure they get their information straight. You guys can go start threads on anything you want. I don't even believe in moderation! People should be able to say what they want and think for themselves. But if someone saying something that is half baked, gives the wrong impression, or is lacking concrete facts, then I'm going to say so.

TwitchyDoc started this thread for support. I actually came here for that purpose--to tell him that I've experienced abdominal spasms (not just twitches) that lasted for months, 24 x 7. Then I see that:

1. He gets a PM that scares him.
2. He is trying not to think about it.
3. He brings it up, so that everyone else can think about it with him.
4. He gets his facts wrong, but then tells me to "mind what I read"!!

According to public posts by the person in question, they did not get "diagnosed with slowly progressing ALS." The person has EMG abnormalities consistent with mnd--but the neurologist did not and can not specify what type she thinks it is. And there are more than one--in fact, he is planning on following up to ask questions on things like Kennedy's disease. Anyone can google usernames and go read it for themselves. You'd be better doing that than reading inaccurate stuff posted by TwitchyDoc. The person in question is free to come here and discuss their symptoms, and I would never suggest otherwise. I also sincerely hope and pray that they still do not have weakness in 10, 20 or 30 years from now.

Carry on people. Discuss whatever you like. Just please get your facts straight.

Cheers,
Bill
Last edited by wjjw on October 19th, 2012, 7:22 am, edited 2 times in total.
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Very strong abdominal twitches

Postby jerry2 on October 19th, 2012, 7:19 am

wjjw wrote:jerry2: If my comments directed at TwitchyDoc offended you, then you have have my apologies. You're a good guy, and I don't want you to get the wrong idea (explained below). I'm not sure what you're saying about "and now you are *beep* about my post". I don't even know what post you're talking about.


No, you did not offend you, I was refering to the 1st post from twitcherHH. Some other people were rude to me, not you. You a re a good guy also. Ai do believe the rude ones here are also good at heart. But there are people who would rather see I am not here. That's all. I wan't call any names, they know who they are. My problem is I was indeed scared by neuro, not reassured. I know it is easier to run this site only with positive news, I understand also I may scare newbies off. But then again there are neuros out there who just arent's reassuring, that's a fact. If I live for another 5 years, I'll be a living proof that even if neuro says atrophy, wierd twitch, don't know, BFS for sure no, ALS it can happen to anybody etc... of wierd stuff, they you can always say, hey, jerry got all this and he is a survivor. That's all.

I wasn't refering to your post at all, you helped me through my worst of times (though they seem to recycle) ;-(

I understand what you are saying. Reading some wierd google thing and bringing it to forum is indeed bad. I brought what neuros told me and it is not very good from the start, but not bad either. More of the "we don't know thing", there seems to be wierd things going on. I am not even sure if anybody is "electrified" every night in arms like I am. I am somehow special even by BFS and I do not want to be.

If I would be ever so reassured by a doctor as TwitchyDoc was... I would be out of scare (I do strongly believe that, even if I am wrong).
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Re: Very strong abdominal twitches

Postby twitcherHH on October 22nd, 2012, 2:22 pm

Sorry if my post sounded rude (English is not my native language). I have to say that I really appreciate that posts are not censored here. If someone wants to disucuss a scary thought he has, that usually starts a good discussion.
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Re: Very strong abdominal twitches

Postby seventhcandle on October 30th, 2012, 1:31 pm

Well, to get this thread back on topic...I have a suggestion about the abdominal twitches. Yes, barely 4 months in to this bfs nightmare and I have experienced these and continue to every night, although not as a hotspot as TD did. I know how to combat it, however.

Fill up a gym bag with about 25 lbs worth of weights (can be old shoes, clothing, etc.) and make sure it has a flat bottom. Then, when you lay down to go to sleep, place the bag on top of your abdomen. I guarantee you it will dampen the twitching.

I twitch and jerk so badly at night that I have had to come up with some creative solutions to allow for sleep and this is one of them. Try it and let me know if it works for you.
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
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Re: Very strong abdominal twitches

Postby TwitchyDoc on October 30th, 2012, 2:54 pm

Thanks, that should actually really work!

Today I am gonna try new medicament, Kepra (levetiracetam) and will see. It is pretty expensive (around 110 Euro, no insurance coverage for this one here) but should work as it is shares the similar mechanism with Tegretol. I will report back in a couple of weeks.
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Re: Very strong abdominal twitches

Postby seventhcandle on October 30th, 2012, 10:42 pm

TwitchyDoc wrote:Thanks, that should actually really work!

Today I am gonna try new medicament, Kepra (levetiracetam) and will see. It is pretty expensive (around 110 Euro, no insurance coverage for this one here) but should work as it is shares the similar mechanism with Tegretol. I will report back in a couple of weeks.


Yeah, let me know how the gym bag thing works out.

I have heard of Keppra. It's another anti-convulsant. I spoke to someone here (glitterwater) about her use of it and it really helped dampen her twitches and myoclonic jerks at night. I am keeping an open mind to trying it some day if my bfs and myoclonic jerking does not improve. Please keep us updated.

BTW, why did you quit the tegretol? Did it just stop working?
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
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Re: Very strong abdominal twitches

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