Misdiagnosis?

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Re: Misdiagnosis?

Postby Yuliasir on June 30th, 2014, 12:46 am

but why surprising... it is well known (and I think especially for persons who read the forum) that some tightness in the throat is common in acute anxiety and people with chronic anxious conditions may have reactive edema in the mucous layer of the troat (and anywhere else too) causing some tight feeling, coughing and even pain...

So in the abscence of clinical symptomes of neurodegeneration any swallowing symptomes are ususlly addressed as anxiety caused :) it is a common issue.
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Re: Misdiagnosis?

Postby jerbear_13 on June 30th, 2014, 7:43 pm

I posted this in a new thread but am not getting any responses so I am going to put it here.

I was recently diagnosed with BCFS after having twitching and other various issues for 4 months. A day or so after neuro muscular specialist visit, I am finding that my tounge, left cheek and sometimes lips get in the way. My jaw also hurts today. I have read that jaw spasms can be part of BCFS. Could that be causing me to bite or is it something else or??? I am going to take everyones advice and move past the possibilty of *** since I have had two clean EMG's and a neuromuscular specialist clear me. So this is my new place.

Please help. I am trying to move past ***. The specialist said he would have been able to see swallowing issues through his exam along with my MRI ans barrium swallow. I would assume that me starting to bite my cheeks a couple days after, he wpuld have been able to see that weakness too.
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Re: Misdiagnosis?

Postby raindog on July 1st, 2014, 4:58 am

My best advice id to believe what you have been told and then tackle your anxiety by going out taking up a suitable sport or hobby that gets you amongst other people etc . Dont go looking for stuff that aint there or answers that dont apply to you either. :wink:
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Re: Misdiagnosis?

Postby Yuliasir on July 1st, 2014, 5:50 am

jerbear,
I think it may be helpful to understand what exactly are difficulties which people with the bulbar onset have and how they differ form yours.
1. Bulbar onset means that brainstem (a region somwhere in the place where your brain becomes a spine) is damaged. This place controls quite primary functions like breathing and swallowing (that is why people with bulbar onset may die before general paralysis - if the breathing center is affected). So, their main symptomes are disrupted swallowing reflex and changes related to glottal nerve denervation (voice changes, changes in tonus of the throat and mouth etc.).
2. MRI would show brainstem lesions should you have a problem here. If nothing - then nothing wrong here.
3. Swallowing test means your swallowing process was filmed, and doctor can see if yout swallowing reflex is preserved or not. If your throat opens under the pressure of barium mass - then you are ok. you may have thyroid issue or mucous edema or reactive esophagal spasms due to GERD - but not disrupted reflex, adn this is seen very good on the test.

Biting your cheek means only that you are too tensed (jaw pain mens the same).
On the living example of our two fellows who were diagnosed with MND, and on the example of our fellow readytocheckout, who complains for speech and swallowing issues for about a half-year and still is followed up and has no MND diagnosis you may see that none of more or less notable change in speech or swallowing could be missed, and they are all always followed up and investigated.

Do not worry then. Or try to.
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Re: Misdiagnosis?

Postby jerbear_13 on July 1st, 2014, 1:35 pm

Thanks you guys. I am trying to be practical about all of this. He said he would have seen true swallowing issues on his EMG of my legs and arms. Does that sound right?
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Re: Misdiagnosis?

Postby Yuliasir on July 1st, 2014, 2:22 pm

My EMG doctor let me understand that he can see if I have so called extrapyramidal issues on EMG. As far as I understand, it may be somehow related to brainstem region too, so maybe it is so... I do not now really but if the doctors say that, probably it is so.
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Re: Misdiagnosis?

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