New twitcher....

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

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New twitcher....

Postby Antologia on December 18th, 2013, 7:38 am

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....
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Re: New twitcher....

Postby UTtwitch on December 18th, 2013, 1:06 pm

Totally understand your fears. However, I would be doing cartwheels if I had been twitching since May and not had any weakness or other real symptoms (I'm only 4 months into this but many will say I should be doing cartwheels as well--clean MRI, nerve tests, clinical exam). If you are 7 months into this and you aren't falling down, tripping etc., and you can still do everything (walk, run, use your hands etc) you are fine. Your EMG will be normal and hopefully it will bring you peace of mind. If you have anxiety it will explain your swallowing issues. Time is on your side.
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Re: New twitcher....

Postby leaflea on December 18th, 2013, 3:21 pm

If swallowing is your only other associated symtpom and it is going on since MAY, that is great. Bulbar moves even more quickly than limb, so you definitely can start to relax. The lady I know who had bulbar onset was given 12-18 months and was obviously disabled at six months and died in 18 months and that was considered a slow progression.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: New twitcher....

Postby Antologia on December 19th, 2013, 7:07 am

Well, the twitching started in May. The swallowing in October. I have been experiencing some small issues like balance-problem when walking the stairs, increase of saliva, tired arms and legs, tired neck, tired tongue when eating things like pancake, tired muscles in my face when laughing and so on since a few years.

I'm not really sure if this is good. I read about people with ALS who experienced the twitching for 2 years without anything else, and then suddenly they got a footdrop or they couldn't whistle anymore and then they were diagnosed with ALS/MND. I know this is rare, but it happens.

Other things I have, this I have since May, is jerks, pins & needles, buzzing sensations and itching. They say that doesn't point to ALS, but I also read that there are a few ALS-patients who do.

So, no relieve yet for me. I get the EMG in January, hope this is good. That won't be the prove nothing is wrong or that I won't develop ALS/MND in the future, but it will mean they can't find anything pointing to ALS at this moment. Which will be the best news I can get, of course.

I wonder, how many people are hear that have twitching for a long time and got diagnosed after a few years? Or don't they come back to tell?
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Re: New twitcher....

Postby emmie.s on December 19th, 2013, 8:05 am

Antologia wrote:I read about people with ALS who experienced the twitching for 2 years without anything else, and then suddenly they got a footdrop or they couldn't whistle anymore and then they were diagnosed with ALS/MND. I know this is rare, but it happens...
I wonder, how many people are hear that have twitching for a long time and got diagnosed after a few years? Or don't they come back to tell?


Hmmm, I think I'm starting to see why perhaps they grew tired of you on the ALS forum. I wonder how many people got diagnosed with late stage cancer and got into a car accident on the same day. I wonder how many people got MS and later died of an ingrown toenail. Both are real possibilities, but are so rare that bringing them up is ridiculous because the probability is so low.

Im sending positive thoughts and prayers that your EMG will turn out clean, which I'm sure it will, and I hope you find support here and welcome to the board. However, my suggestion is to keep your irrational fears to yourself on this forum because there are many people here that are in a delicate mental state and don't deserve to have to read about them.

The fact is that ANY neuro will tell you that twitching for months without weakness or other changes in reflexes, etcetera is benign. Someone here even posted a follow up email from those two famous researchers, Carvhallo or something I believe, and the clarification in it is great regarding their "worrysome" study.
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Re: New twitcher....

Postby UTtwitch on December 19th, 2013, 10:25 am

Anything is possible. I guess I could get hit by an asteroid this afternoon but it's probably not likely. Have you had any blood work done? Low vitamin B12 and D cause neurological symptoms. I discovered I was low vitamin D (19--should be above 50) about 10 weeks ago and have been supplementing with 50,000 UI a week since then. My symptoms have improved but not fully. Also, and thyroid issues? I would also suggest you work on your state of mind. Anxiety and stress can wreak havoc on the body--you may not think you are stressed or anxious but your posts tell a different story.
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Re: New twitcher....

Postby RGB on December 19th, 2013, 11:08 am

Antologia wrote:
Other things I have, this I have since May, is jerks, pins & needles, buzzing sensations and itching. ?


Get any anxious person to focus intensely on their body and see what they report. It will be a lot like this and this is nothing like precursors to ALS. You're not imagining these sensations, but you may well be drawing the wrong conclusions.

You'll have a clean EMG but you'll still worry about 'outliers', but outliers are outliers so for the same reason that I have never won the lottery then you won't get ALS.

RGB

PS Not trying to sound harsh, just getting the sense that you would benefit from honesty rather than being indulged. "emmie.s" 's post above also makes similar points, but with female tact :)
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: New twitcher....

Postby Antologia on December 20th, 2013, 3:59 pm

Hello, thanks for all your answers and reply's. I don't think you ar harsh, I understand that you are all trying to help, which is fine.

It's true, I don't feel stressed. At first, I wasn't afraid at all. I thought I was fine and it was nothing. But when the twitching didn't stop and I was experiencing other things, then I got worried. And of course, being afraid does strange things with your mind AND body. I know that you all are right about that.

I do really feel the needles, jerks etc. They are certainly not in my mind, that's for sure. I never had them. Suddenly I did. I was never worried before about my health.

The swallowing and increas of saliva, that's something I'm not really sure about if it's related to my fears or not. It could be.

I hope you are all right about the EMG. That this will be clean. Keep you all posted.

Thanks for the support until now. It really helps to share.
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Re: New twitcher....

Postby Steph on December 20th, 2013, 4:46 pm

I've experienced the saliva/swallowing. I actually had that before twitching. The twitching came after a search on swallowing problems and excess saliva led to ALS fears. Oddly, once I became focused on the twitching, the saliva and swallowing problems went away. They have come back a couple of times since, but they always disappear when I'm not thinking about it. It seems whatever "symptom" is my greatest focus, is also my greatest problem at the time. The symptoms are certainly not "imagined" they just see to somehow manifest the more I focus on them.
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Re: New twitcher....

Postby Englishtwitcher on December 21st, 2013, 5:24 am

I'm having excess saliva issues and a feeling of a thick tongue. I've had it before so I'm hoping it's anxiety. It's a bit better today but yesterday was a nightmare.

I think it's true that if you are hyper vigilant about your body you will start to feeling things that you normally would not notice.

I'm getting anxious because when I lie on my back I find it harder to talk. I noticed it the other day when I was lying in my son's bed reading him a story.

I know my anxiety is bad at the moment but hopefully that's all it is. Still twitching!
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Re: New twitcher....

Postby Antologia on December 24th, 2013, 5:23 pm

The focus on ALS makes you feel more then there is actually going on in your body. That's for sure. At the moment I'm also experiencing swallowing problems. Sometimes the swallowing reflex doesn't work for a minute or so and I also like to have troubles with saliva that goes wrong when I swallow. It's not really choking, however I do cough when that happens.

The twitching is still there, just like the jerks, pins and needles. I wish it would stop, so I could stop worrying....

I hope I can get this out of my mind for Xmas.

Merry Xmas everybody here.
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Re: New twitcher....

Postby I'mBatman on January 2nd, 2014, 2:41 am

Hi, I'm new to the site but not to the ever present "Twitching" I have been suffering with the never ending symptoms for 4 years now. I have not been diagnosed with BFS, or for that matter anything else. Dispite having seen 3 Neuro's. I have for years suffered from depression and anxiety, sometimes to the extreme. So I suppose it could be that that's causing all my problems, I just don't know. At times it's physically draining, but the emotional side is much worse especially when no takes you seriously. I have spent the last year realitively symptom free, except the minor twitch here and there. Just before Christmas every symptom going, twitches, aches, stiffness, migrating numbness, tingling etc. It's like Hell.
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Re: New twitcher....

Postby Antologia on January 2nd, 2014, 10:16 am

Hello I'm Batman,

Four years is a long time... If you don't have any other problems, this is a good sign. Like weakness, I mean. Strange that after a year without problems they suddenly started again :( However, it seems to be anxiety, as you say. I assume you did have an EMG, did you?

I'm still waiting for the EMG. I have it in 2 weeks, if that is okay, I will stop worrying. I can't imagine this won't give any sign of ALS/MND with te problems I'm experiencing.

Unfortunately, I do have some other problems beside the widespread twitching. I have light swallowing-problems, like coughing during diner sometimes, mostly with bread and sometimes the swallowing reflex doesn't work. I also have increase of saliva and I'm biting my cheek. I do not feel twitches in my tongue, but I do see a very light shivering when I stick my tongue out of my mouth. My tongue and jaw feel tired when eating.

It could all be anxiety as well, the swallowing problems, I know that (and I hope they are!). The EMG will tell if it is or not.

Good luck for you!
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Re: New twitcher....

Postby leaflea on January 2nd, 2014, 11:21 am

Yes it can be anxiety. I have the exact swallowing things. But they wax an wane for periods of weeks. Please keep this in mind and try not to worry. Please post EMG results. Either way. It is important to us. My prayers go with you as you go. I have my neuro exam on 1/8. Had a clean EMG 12/5.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: New twitcher....

Postby Antologia on January 2nd, 2014, 2:16 pm

I certainly will let you all know how my EMG was. I was just thinking today that it would be good to get a section on this site with all the complete stories. Because on the forum you need to search the names to see the outcome. If you have the whole story complete, you don't need to search. You can complete the page every year, if needed.
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Re: New twitcher....

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