After about 9 years I'm worried again

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After about 9 years I'm worried again

Postby notfromearth on January 13th, 2014, 5:35 pm

Hi all,

At first, let me introduce myself: I’m 31 years old and male. My English is rather bad, I hope you understand what I want to say/ask nevertheless .

First of all, I’m well known to BFS, I was diagnosted about 9 years ago. I started having some twitches in my left eyelid at first (after having a flu), after a few days, I had some truly weird (very slow moving) twitches at the left side of the upper lip, and then they spreaded to my whole body… it took my quite a while to get used to them, visited 2 neuros. However, after some months, I could live very well with them… during some weeks, I hardly experienced any twitches at all and on some weeks, I had them quite often (a weird hotspot seems to be my right temple). So far so good.

However, now I start to be worried again.

About 1 month ago, I started experiencing some weird feeling in the right part of my tongue (some sort of numbness, but it doesn’t fit exactly, as I can still feel everything there), which tends to change it’s spot every now and then, but always on the right side of the tongue. Also, sometimes, it feels like I produce more saliva on the right side in my mouth then on the left one, at least I have the feeling that the right side is more wet. However, sometimes, my mouth also seems to be rather dry and my tongue seems to stick a bit on the top of my mouth when I touch it with it. When I move my tongue out of my mouth, it strongly fasciculates, however, when I keep it in my mouth, it is ‘almost’ calm… Which means, usually after about 2 seconds of relaxing my tongue, I experience a twitch at the center (a bit left of it) of my tongue (yes, here it is the left side indeed, and it is always the same spot). Sometimes, my tongue also does twitch as a whole or I see one or two other little twitches on it (a few I can feel, most I can’t), but usually, stays calm, maybe there’s a twitch every like 15 seconds on average, the fine twitches remind a bit on one of the disease tongue videos (which probably most have seen)

I also have the feeling that my speech is slightly more slurred than it usually is, and often when I want to form the letter L, it sounds a bit weird to me (I recorded it to hear it myself, there I don’t here it that clearly and the recorded speech also seems to be less ‘slurry’ than I think it is when I’ve spoken a text. Also, a few other letters feel to be a bit more difficult to be spoken out for me than usually.
About the L-letter, to be a bit more accurate, it often seems that some small ‘bubbles’ of saliva pop while pronouncing this letter, but only if certain letters have been used before… for example, it always happens when I use a word like ‘sLur’ or ‘mostLy’, and those bubbles mostly seem to pop up at the right side of my tongue. However, I don’t have any problem if the letter L follows after a vowel (like in ‘hello’)

Swallowing problems haven’t been occurred so far, and I can move my tongue everywhere I want.

On the right side of the tongue, I also have a little part that ‘might’ look a bit atrophied… but that’s truly hard for me to determine if it is really an atrophy or just something ‘common’ (maybe I should post a picture of it?)

Also, a weird thing I observed is, that if I touch my tongue far behind, I have a reflex that pulls it in, even if I touch it several times in a row there I never can avoid that reflex.

I probably have to add that I’ve been to the dentist several times during the last months as he had to repair quite some teeth (I clearly didn’t go there for too long... and btw, he didn't use any amalgam fillings... just composite ones)… could that be a reason for that? Strangely, my symptoms didn’t appear right after I went there, they came some days later. I’m gonna see him again in a few days, but did anyone of you ever get such an experience too?

Now, since I’m a bit worried, some other symptoms also seem to have appeared. I sometimes feel a bit weaker than usually in my right hand, and on the left side of my middle finger (at the joint that is closest to the finger nail), I feel (don’t see) some truly weird sort of twitches… if it can even be called that, it is like a super-slow-motion of a twitch that goes about 5 seconds.

I also feel sort of 'pain' (rather weak) in some fingers or also in thigh sometimes, but this usually disappears after a few seconds

Also, just to test my physical strength (I don’t do much sports usually), I did some push ups (about 10), which worked fine… However, a while after having done them, I felt a strong sort of ‘tremor’ when I was holding my arms up, which disappeared when I put them down again… is that common for BFS?

Generally, since I’m worried again, my twitching rate has gone up, the often appear in hands, arms and calves (surprisingly not in feet).

Does all this still go along with BFS?

Thank you all for your answers in advance
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Re: After about 9 years I'm worried again

Postby Yuliasir on January 14th, 2014, 12:44 am

Also, just to test my physical strength (I don’t do much sports usually), I did some push ups (about 10), which worked fine… However, a while after having done them, I felt a strong sort of ‘tremor’ when I was holding my arms up, which disappeared when I put them down again… is that common for BFS?


as a non-sporting fellow, I can say that this is common for any person who does not exert the muscles regularly, so you should not worry about that.
as for slurring your speech, unless other people do not ask you to repeat the words becasue you sound like you have a mouth full of porridge, you also should not worry.

i also feel unilateral buzzing in my tongue for about a year now. it does not prevent me from taking vocal lessons so I believe my vocal apparatus is still ok.

and please remember the golden rule invented by ALS people: failing, not feeling. Feeeling that your hand is weaker is just a feeling. Failure to hold a key or a cup, or failure to pick up small things is a failure.

and please do not test your vomit reflex (that is what you do - touching a tongue root) otherwise you may end up really vomiting. That means that your tongue is perfectly healthy innervated, and there is nothing to worry.

looks like your bout is associated with the recent fears and unpleasant issued due to dental interventions.

have a good day

yulia
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Re: After about 9 years I'm worried again

Postby notfromearth on January 17th, 2014, 6:52 am

Thank you for your answer,

Little update now: I went to the dentist, but he didn't see anything on my tongue, but he said he can't imagine it has something to do with the stuff he has done in my mouth.

The weird feeling in my tongue is still there, I'll go to a doctor in a few days because of that now. Suprisingly, I never have the strange feeling there while I'm eating, and sometimes I hardly feel anything extraordinary there for 1-2 hours, but often while talking, it just feels weird at these spots (it's always at the right side of the tongue, though not always at exactly the same place it seems...).
This is also not imagined (the feeling definitely IS there) and doesn't increase/decrease with stress or anything like that (unlike the twitches, which of course have gone up during the last few weeks... I guess that's normal).
The tongue sometimes also feels a bit like it is lying a bit wrong on the right teeth. It's truly hard to describe. But I can still taste everything normally there, and also still can move it like I want, also no swallowing problems, and my speech hasn't changed according to some people.
I hope it's just sort of a damaged nerve.

Now, during the last days, I also feel some truly weird twitches in the fingers of my right hand randomly (all fingers), often where the joins are. very fine twitches that I can't see but feel. Also yesterday it happened to me that after having opened a bottle, the cap fell on the ground (as if I couldn't hold it... but maybe that was just a coincidence). I don't have any other problems holding things though, and I could open the bottle normally. (I just mention this because it is said at the disease we all fear people have trouble holding things).

Now when looking at my right hand, I'm not sure if I see some atrophy... so I upload some pictures of it... does it look normal to you? (to me it sometimes seems a bit atrophied at the palm).
Btw, the darker spot on the index finger is just a trace of ninhydrine, I work in a laboratory ;-).

http://de.tinypic.com/r/r1m0ls/5 (here it looks rather normal)
http://de.tinypic.com/r/2ylwi8o/5 (but here, if I hold it like that... is that some atrophy between thumb and index finger?)

Thank you for your answers in advance

Marco
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Re: After about 9 years I'm worried again

Postby Yuliasir on January 17th, 2014, 7:30 am

Oh! Fellow chemist (before becoming a translator I was a chemical engineer and even a lab manager for about a year) :)
Marco, your hands are perfectly healthy, no signs of atrophy. I have much skinnier hands and even mine are not atrophied :)
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Re: After about 9 years I'm worried again

Postby notfromearth on January 28th, 2014, 7:29 am

Alright, time for a little update.

First, the positive things: it seems that those weird twitches in my hand reduced and if I don't focus specificly on my hands, there doesn't seem to be anything strange...

But well, the tongue symptoms didn't change much.

When I eat, my tongue feels completely normal. But especially when I wake up, I still have that strange feeling on my right side of the tongue (at the bottom), plus it seems it sometimes also feels weird further down. when I pull my tongue out, that spot that feels strange fibrillates quite quickly, but generally my right side of the tonge fibrillates much more than my left side it seems, and on the same spot on the left side I can't see any fibrillations. Of course I know that when I pull the tonge out, it can't be completely quiet and even fibrillations aren't uncommon then, but is it normal that they appear on the right side much more than on the left?
When I rest my tongue, there are usually a few occasional twitches... sometimes there aren't any for about 30 seconds, sometimes a certain spot twitches a few times (which usually disappears after I move my tongue and rest it again), and sometimes I observe single fibrillations (rarely) that seem to appear on random spots of my tongue. When resting it, I don't see any difference between my left and right side.

My speech is normal according to people I ask... I still sometimes feel that the letter L makes me more problems than usual to pronounce at random words, especially when that letter is in a combination with a G or a K. I don't know if I just notice this because I focus so badly on that, but no one has told me yet that my speech has become worse. Swallowing has never be a problem.

Since I haven't found anything on it about the disease we all fear... has there ever been a case where the first symptom was a weird feeling at some tongue spots on one side, before any speaking or swallowing problems occured?


I should also mention: I went to a doctor because of my tongue problem... he didn't see anything special and gave me something against 'combustion' (I doubt that is translated correctly)... I take one pill every day, but it doesn't seem to change anything...

Can anyone comment on this? Thanks in advance

Marco


PS: I really don't think that this tongue feeling is anything psychic... it's about the first thing I notice when I wake up and unlike the other BFS I have, it doesn't seem to change with stress and things like that
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Re: After about 9 years I'm worried again

Postby ShawnW on January 28th, 2014, 8:09 am

Those are the most normal hands...that maybe I have ever seen. :D No atrophy.

You are a health worrier...most likely a very healthy health worrier. Nothing you have said concerns me. I am able to be objective about other peoples symptoms. It's mine that turn my objectivity off.
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Re: After about 9 years I'm worried again

Postby notfromearth on January 28th, 2014, 4:45 pm

Of course, it's much easier to be objective when help others than when you have symptoms yourself ;-)... I think one problem here is that each individual's symptoms vary slightly and if you want, you can even find things that haven't been mentioned yet, I guess.

I really hope all this tongue stuff I described is still normal...

Thanks to everyone who gives support here, really
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Re: After about 9 years I'm worried again

Postby ShawnW on January 28th, 2014, 5:01 pm

notfromearth wrote:Of course, it's much easier to be objective when help others than when you have symptoms yourself ;-)... I think one problem here is that each individual's symptoms vary slightly and if you want, you can even find things that haven't been mentioned yet, I guess.

I really hope all this tongue stuff I described is still normal...

Thanks to everyone who gives support here, really


I get weird sensations of the tongue as well. There are people here who's tongue wag and twitch. Tongue stuff is VERY common. With all of that said...if you truly have bulbar symptoms you will know quickly...it won't hide. You would soon experience very quick decline. I have noticed my speech gets really thick when I'm anxious...have problems forming words...feel like I can't pronunciate. I was giving a lecture the other day and had trouble forming words for about 2 minutes. It was just nerves. My mouth gets dry...then somedays very wet. Everything you have described I either recognize myself or with the stories of others.
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Re: After about 9 years I'm worried again

Postby TwitchyDoc on January 29th, 2014, 2:57 am

I suggest you seeing a neurologist. Not because I think this is MND related but the unilateral nature of your issues and their persistence warrants an investigation, especially when the brain stem is involved. MRI is standard for cases like this.

MND does not present with sensory issues but other conditions doo.
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Re: After about 9 years I'm worried again

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