10 years (functional but with some issues)

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10 years (functional but with some issues)

Postby TwitchyDoc on November 7th, 2016, 3:47 am

In a while, it will have been 10 years since I started this whole BFS thing. Started suddenly, I still remember my very first twitch in my elbow. In retrospect, I had had facial twitches that went for days even a few years before that. Anyway, my fasciculations have been widespread, mostly in my upper body, rarely affecting legs. Arms, back, abdomen, neck.. tongue joined in 10/2010.

Fast forward, I still do what I used to do but have some swallowing issues (2 years now) - phlegm and throat clearing after meals (not always), frequent tickling and wheezing. No pneumonias and modified barium swallowing with no penetration/aspiration, so it is unlikely I truly aspirate food. Lately, I get wetness in nose after drinking but coloured drinks are never present in my nasal cavity, so again seems not to be nasal regurgitation. But makes me anxious every time I eat, everytime I drink..which is tiresome.

A neuromuscular specialists thinks I have benign motor neuron disorder, having told me it seems that those syndromes are somewhat more frequent in the last years.

So, that is it :)
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Re: 10 years (functional but with some issues)

Postby leaflea on November 8th, 2016, 12:47 am

hey TwitchyDoc, what do you mean those syndromes are more common in the last years? I too have the wheeze, throat clearing like mad the past couple months! Thinking about getting an xray too. I have asthma, but using the inhaler way too much lately and it seems less effective. Always feel like a post nasal drip too. Could it all be related? Certain subtypes of us?
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: 10 years (functional but with some issues)

Postby TwitchyDoc on November 8th, 2016, 10:43 am

If you have asthma, it simply can be the temperature of the liquids.

Anyway what the specialists said was that recently, various LMN syndromes appear which transcendent the simple benign-malignant classification. BFS is thought to be a benign motor neuron disorder (providing that the actual origin of fasciculations is truly neurogenic). There are patients who develop loss of motor units with no further progression etc. From this perspective, even EMG with some red flags might not mean the dreaded ALS.
To be honest I do not believe those syndromes are more frequent, I think it is just that most people now can google and get it checked :)
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Re: 10 years (functional but with some issues)

Postby Yuliasir on November 12th, 2016, 3:21 am

Hi TwichyDoc nice to see you are still functional.
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Re: 10 years (functional but with some issues)

Postby Arkansan on November 14th, 2016, 1:40 am

It's nice to everyone here in general. Sad that the board is kind of quite these days. Have we all moved somewhere else?
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Re: 10 years (functional but with some issues)

Postby Bibi on November 16th, 2016, 4:43 pm

Nice to see you All. For me it started in april 2014 with fascikulations especially under left foot. A physiotherapist told me that i had Wrong muscletonus , i Googled and get terrified. After that fascikulations spread to All over my body and around eyes. In 2012-2014 i had frozen shoulder in Right side , it Was cured in 2014 . In jan 2016 i Got a frozen shoulder in Right side and in march i saw that i have athrophy of both shoulder but most in Right . This Was confirmed by a orhopædiatist and later neurologist . I have had dystonia in Right hand since 2005 and i had an EMG in May 2016 only in The arm While i wrote. I Was told that it Was obviously that my brain sends Wrong signals to Wright hand . He send me to ALS specialist at The main hospital in Denmark. She did a clinical and Said that i Was not suspect for ALS. She Will not do an EMG but told me to come back if things gets worse , if not she Will see me in a year. So it has been a hard year ! I have a lot of symptomes , cramps in feet , fascikuations in leg , thighs , shoulders , back and still left feet and around my eyes . If i touch The skin or blink hard it Will start. I have a dry unconfortable feeling in toung , GERD , hiatal Hernie , clearing my throath after drinking and hoarse Voice in The morning. And athrophy of shoulders . I have given up seeking answers , for the moment given up on doctors. i just hope that i Will not develope weakness. I try to gain muscle by training , but i dont see more muscle. Live Day by Day , walking in Nature , dancing , knitting and listen to Music. I try to forget All my issues and worries but it is not always easy
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Re: 10 years (functional but with some issues)

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