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Hi !

I will try to make myself the most clear and brief as possible (you can see my other post for more information).

In brief:

October 2016: tongue bitting and what lookd like fasciculation (still ther today)
December MRI...nothing

February 2017: Emg with a specialist in ALS. No sign ALS, but order test for Mysthenia Gravis (negative)

Early April 2017: Emg again with same specialist. No MG, but she now seen fasciculation on Eme. She told could be benign or could be ALS. She want another EMG in August

June 2017 Appointement with a neurologist NMD specialist. Examination normal, EMG nothing she worth mentionning to me.

March 2018: EMG again with the ALS specialist I have seen twice before. She says that shw would test me only on two places and that I must chose those places (strange it seems to me). Shouler and tricep it will be since it seems I got more twiches in that region. No change from April 2017. She says it's a good sign. Shhe says come see me again in 6-8 months so we could touch a base together. Maybe I will do more tests then.

Now here my actual situation:

-Still twitching everywhere in the body.

- i've noticed that for a month when a drink minimally (2 beer or 2 glass of wine) I begin to slurred my speech. I know it was not like that before.

I've read that with most of als patient, alcohol made their symptoms worsen or appears...


- For 2 years i have burning pain in shouldesr at minimal effort (cumbing my girls hair)

- Last week i've been to the dentist for a root canal treatment...my left cheek and lips would shake hard 3-4 times for 7-8 seconds during the procedure (45 minutes total)

- ine the last months 3-4 times i've been angry with my student (im a teacherr...in french not english obviously !) and when I raise the voice and feel overwhelmed a bit by the situation my mouth shake a lot....


I know my EMG was clean in March (well right arm was clean) , but it was 3 months ago and not in bulbar region.

Could it be the begining of you know what ? Any ideas what could give me those symptoms ?


Thanks a lot !
 

Bestfriends14

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After 17 posts in 2.5 years, many visits to an ALS specialist and numerous member's feedback about you not having ALS, what is bringing you back here and asking pretty much the same questions to terminally ill members or their caregivers?

My best advice to you is to seek counselling to determine why you appear fixated on a disease you thankfully do not have. I'm sorry to be blunt, but you've received many answers that have not satisfied you, thus this site is clearly not working to allay your fears. I'm not sure what you have, whether it be physical or emotional, but I do recommend continuing to work with your gp.

Take good care and best of luck to you.
 
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2.5 years ? More like 1.5. The difference is important. There's a lot of people who are diagnose after 2 years initial symptoms....
 

Bestfriends14

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I beg your pardon. I.5 years of posting and, according to your first post, nearly two years of issues. You still don't have ALS, regardless of timeline. Time to seek out a new disease as ALS is not on your radar. As well, again, please seek counselling.

Take good care
 

lgelb

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I don't know where you get that "a lot of people" are diagnosed 2y after seeking care. While there can be delays, these are delays where doctors say "Something is wrong with your nerves and we have to narrow down what," not "Oh, there is nothing wrong" and then 2 years of symptoms later, there is.

By your account, you have had symptoms for nearly two years, have had multiple EMGs and at least one MRI, and no one thinks you have a nerve problem. That is not the typical history of ALS. And yes, a limb EMG would pick up bulbar onset ALS.

An exaggerated response to alcohol suggests not drinking it...and reconsidering things like hydration and nutrition, which can relate to the rest of your symptoms as well. You might also want to check with your PCP about other labs that could be run. But as BFTTE points out, we don't have any evidence at all that you belong here -- a wonderful thing! -- and much evidence that you do not.

Best,
Laurie
 
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lgelb: I dont have any alcohol problem. My bloodwork is quite uneremarkable and my nutrition is not bad at all.

Limb emg would pick up bulbar onset, It was only in one limb and it was 3 months ago...
 

Clearwater AL

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Tongue, as you wrote...

"March 2018: EMG again with the ALS specialist I have seen twice before.
She says that shw would test me only on two places and that I must chose those places."

('....I must chose those places.")

That speaks a short volume of what you don't get.

I doubt anyone who has had an EMG where the Neurologist asked,

"And where would you like me to do the EMG?"

Edit. Maybe if you don't get it this may help...

What you don’t get… she has seen you several times, done EMGs, you come back
with complaints, she follows through but…

Maybe in some exasperation she said to herself “Whatever” then said aloud,

“You chose the places.”

Knowing it doesn’t make any difference anyway.

She gets paid well and a few involved get paid well doing these EMGs.

Orthos secretly appreciate obesity. Neuros secretly appreciate anxiety and
the Internet. :)

Think about it.
 
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