Still having doubting days...

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Still having doubting days...

Postby Souris on November 6th, 2002, 3:58 pm

Hi everybody,
I finally registered on this forum. All your posts help me a lot with my anxiety, but I still have doubting days, like many of you.
I started twitching 5 months ago, after a very stressful period. I looked twitching up on the Internet, like everybody here... and then went to see a neuro, who did some reflex etc. tests and said I was having myokymia and that I did not have to worry. But he did not do an EMG, we didn't even talk about it, because I wasn't very scared at that time, but the longer I thought about ALS, the more nervous I was getting, especially about my (not very frequent) tongue twitches.
I also have muscle pain, vibrations and shaky muscles, but I still do quite a lot of exercising (indoor climbing, aerobics). Sometimes, workout with weights is difficult and I feel weakness in my arms, but then the next day it's fine again.
Actually, after having read most of the posts on this forum and after having a long conversation with my boyfriend who is very helpful, I calmed myself down a lot and of course, my twitches calmed down as well.
But now, I'm doubting again, stupidly. I'm having a tingling sensation on my tongue now, always on the same side. I've read on some website, that tongue tingling is a common symptom of anxiety, especially in hypochondriac people who are afraid of cancer (or ALS in our case!). But my scared mind keeps telling me "what if it is actually a constant twitch, but a very fine one, that you can barely feel"... Of course, I started to have a lump in my throat, and I observe my speech very carefully now, and everytime a word comes out a bit slurry, which I think happens to everybody from time to time, I'm scared to death...
Anyone else with that experience?
I've been scared as well about perceived weakness in my arms (now better, depends mostly on how long I work on my computer) and one leg. I should say that I'm having a chiropractic treatment at the moment for my back and as the guy keeps re-adjusting my spine, he says it's normal for me to experience muscle pain from time to time, as my muscles get used to the new body position.
I keep telling myself that ALS would not move around from my arms to my leg, to my tongue! It's just too stupid to keep worrying, but I can't get my mind off of it.
Maybe I should go back to the neuro and have an EMG to calm myself down? I don't know what to do, I'm wasting my time worrying, yet I can't help it...
Thanks to all of you and take care.
Souris
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Postby Brian_B on November 6th, 2002, 11:26 pm

I went through the same thing as you did and you are right ALS would NOT move around from arms to leg to face or to any other place. it is progressive, meaning it starts in one part and moves on in that one part until it no longer works, then and only then does it move on. I have been twitching for a year now and it took 3 doctors to convince me that I did not have ALS but once I realized that and and kept taking the medicines they had given me the twitches got a lot better, so if you still doubt get a 2nd or even 3rd opinion if it would give you peace of mind. I know Arron has said before ALS weakness does NOT get better, it only gets worse, meaning you wont feel weak one day but strong the next and so on and so on.
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Postby Arron on November 7th, 2002, 2:28 am

Souris girl, relax, NOTHING you described sounds anything even remotely like ALS, what so ever, not even the tongue issue. ALL of your symptoms are exactly in line with BFS and nothing more. We've all experienced the EXACT same thing as you, including the strange speech stuff from time to time and yep, it's anxiety. When you get slurred speech with ALS, you would certainly have other MAJOR symptoms as well going on in your throat. So, now that I've said that, you will no doubtedly start feeling "other symptoms" in your throat, or you will at least start watching for more symptoms. PLEASE don't fall into that terrible cycle. It is a waste of time and energy. Ah, the joy's of anxiety and fear. They can make your body do and mimick things you couldn't even imagine! Hang in there. You sound like you are just fine except for the anxiety and BFS symptoms, but you can LIVE with those :-)
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Postby tlotoxl on November 7th, 2002, 4:33 am

souris -

just another 'aye' here; i've experienced all the same symptoms you've listed. my tongue tingles sometimes, twitches others and i've had occasional myclonic jolts in my tongue ever since i hit puberty, generally when speaking under stress but not always.

of course everyone participating on this forum suffers from worrying against our better judgement, so there's no point beating yourself up about it. arron swears by medication and the best thing i did so far was take a six week vacation to india (worrying about malaria and filaria took my point of bfs!). now i'm back in japan i'm suffering from insomnia again and my twitching has gotten worse and i do have my bad days... but the forum's still here and i guess after more than two years of twitching i'm starting to get used to the routine.

hope you're feeling a bit better.
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Thanks

Postby Souris on November 9th, 2002, 12:56 pm

Thanks to all of you for your replies.
I'm so happy I found this forum. Well, I would prefer not having searched for "twitching" on the Web in the first place, but now that harm's done, you guys are a great help!
I'll need some more time to start worrying completely, but I feel a bit better. I'm taking some magnesium now and my twitches are already a bit fewer. I hope they'll leave me alone one day.
By the way, I'm a German girl living in France. My English is suffering a bit since I'm speaking French all the time, so I hope you can still understand everything I'm writing :lol:.
Special thanks to Arron for making this forum such a great place for getting reassuring info about BFS.
Take care.
Souris
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Thanks

Postby Souris on November 9th, 2002, 1:09 pm

Thanks to all of you for your replies.
I'm so happy I found this forum. Well, I would prefer not having searched for "twitching" on the Web in the first place, but now that harm's done, you guys are a great help!
I'll need some more time to start worrying completely, but I feel a bit better. I'm taking some magnesium now and my twitches are already a bit fewer. I hope they'll leave me alone one day.
By the way, I'm a German girl living in France. My English is suffering a bit since I'm speaking French all the time, so I hope you can still understand everything I'm writing :lol:.
Special thanks to Arron for making this forum such a great place for getting reassuring info about BFS.
Take care.
Souris
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Postby Arron on November 9th, 2002, 4:56 pm

Souris, glad to hear you are doing better and thanks for the praise, but keep in mind, everyone on here helps as much as they can and everyone os just as important and I. I am just a part of this site, not all of it. I learned from the info and input from many other's. Glad to hear that you can take our input and put it to use. We all need a little help from time to time :-)
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Postby Asterix on November 10th, 2002, 9:03 am

Hi Souris,

nice to hear from another european
twitcher (almost thought I was the only one ;)

I can relate very much to your situation: I too have been twitching for
only about half a year and had a clean neuro exam but no EMG done yet.

At the moment I am struggling to force myself to take the decision to
schedule an EMG. Unfortunately, though, I'm afraid of a false
positive result and the fact that, in case it is ALS, there is absolutely
nothing to be done about it anyway, so actually I'm not sure if I really
wanted to know if I have it or not... I mean, after having made
the the big mistake of looking up "twitching" in the internet, I now know
what a great bliss simple ignorance can be !

So, in the meantime I'm hanging in there, playing the waiting game
and seeking reassurance in the BFS forums.
(I'm also lurking/posting quite a bit at the harvard neuromuscular forum
(you can read my complete story there))

Unfortunately, there seem to be no such great twitcher-community
here in germany (BFS is not even recognized much among neurologists here :(

I only found one interesting discussion about twitching in the
med1-neurology forum:

http://www.med1.de/Forum/Neurologie/804/1/

How about the french twitchers ?, any informative BFS sites avaiable in
french ? Is BFS recognized as a real disorder among french neurologists ?

Maybe we could exchange e-mail addresses and talk about experiences with our
euro-twitches (just send me a private message)
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Still scared

Postby Souris on November 13th, 2002, 2:40 pm

Hi again,

I'm still going through my "bulbar onset" frenzy... I start thinking that I actually enjoy scaring myself, maybe some masochistic tendency...
My tongue twitches aren't more frequent, but I still have that tingling feeling on the right side of my tongue. And I'm feeling I can't pronounce some sounds (like "th") like before. But then, I've always been talking very quickly, and I still do, so from time to time a word comes out slurry, should be normal. Don't have any problems swallowing, except for the occasional anxiety-related lump in the throat.
I did the stupid thing today of going to another forum where there are many people with ALS, and reading that some of them only got diagnosed after a year or so, some only had fascics in the beginning etc. scared me completely again. One even mentioned that his ALS started with a sore throat. I'm having a sore throat right now, but that shouldn't be unusual in a cold automn week... I'm also having a hoarse voice from time to time, but that's mainly when I'm deep into my anxiety.
I remember being scared of Hodgkin's disease last year because of two swollen lymph nodes, and I also had a hoarse voice for a long time, because of my constant worrying about my neck/throat area.
I got another neuro appointment scheduled for November 29, I finally think I will not manage to calm myself down on my own. My boyfriend and my chiropractor are very helpful, but then they are no experts...
Dave, can you tell me more about your tongue symptoms. That should calm me down a little bit, as yours did not turn out to be ALS.
Sorry to bother all of you again with my hypochondria, I just can't help it.
And Arron: I know that you're not the only one who's helpful on this forum, I appreciate every single post here, I simply wanted to thank you in particular for putting so much valuable information in here. Your "BFS in a nutshell" is really great.
Thanks to all of you.
Souris
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Postby Jen on November 13th, 2002, 8:06 pm

Souris, I also went through a "bulbar onset" frenzy. It was short-lived, but scary just the same. I had a numb feeling on one side of my tongue, near the back. I would slur the "th" and "s" sounds, and my voice became hoarse over the months. I also had a "lump" feeling in my throat. The lump feeling got worse as the day went on. I would get breaks from the symptoms just mentioned, which convinced me that I did not have ALS. ALS is progressive and my symptoms remitting every so often went against that. My doctor referred me to an ear/nose/throat specialist, and his diagnosis was GERD (gastral-esophigal relux disease).....I know I spelled that wrong....., and I was given a perscription drug which has greatly lessened the symptoms. The specialist said that there could be 2 more causes. One is allergies and the other is esophigal spasms. He suspected that I have the GERD and the spasms. Spasms, of course, are common with BFS. Unfortunately, allergy medicines (in addition to allergies themselves) can also cause these symptoms. I do have allergys (I live in the allergy capital of California), and it's possible that the allergys and/or the medicines are giving me a problem as well. I hope that some of this information helps calm you a bit. Try and stay away from the ALS sites. They can be mighty scary :evil:
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