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corwin

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Hi, I don`t know if somebody is reading the posts but this is a forum, so I make my updates.

Today another EMG, again clear.
Doctor MND ALS specialists told me this time - you have obviously tongue atrophy. My tongue is tingling almost 24/7 and when I stretch it - it quivers for 2-3 seconds and stop.
I have full tongue movement speed, it`s strong, but with atrophy - symetrical from the both sides. The MND spec told me that he don`t know what is this.... He think - no ALS, but can`t say what it is.

I test somehow positive for lyme - it was borderline, and now I`m making big and expensive tests for Lyme and co-infections. I don`t believe that I have Lyme but we will see.

Slurring is more detectable, back side of the tongue make my swallowing hard - it doesn`t move properly. Have problems with saying some words... Trouble with forming..

Voice is hoarse

Post nasal drip

Teeth chattering

Whole body trembling

Whole body weakness

Whole body twitching which are relaxed with the use of Hydroxyzine hydrochloride.
TINGLING in tongue - that are my symptoms now..

The tingling is like battery on the tongue... Real strange. I read about 1 forum member Jellis86- which have the same or 90% same pomplains and in the end he have bulbar... so not good :(

They are getting worse....

So I will wait to see what`s going on and the result of tests. I visit LLMD and he ordered 12 test for viruses. He think also that it can be virus, who has damaged my cranial nerves - everything starts with flu-like symptoms 1,5 years ago....

SO hope for everything else that ALS, but have inner feeling that it is ALS actually...
Mri clear, but no spinal tab - so MS is not quite expelled...

If I have ALS it will be with sensory nerve damage also, which is rare, so ....

32y.o - rare, Bulbar -rarer, Sensory involment- even more rare....
 

lgelb

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Corwin,

If there is suspicion of an infectious dz such as Lyme, I encourage you to see a general infectious dz specialist rather than an LLMD, who apart from what I might say about the scientific merits, focuses on only one type of disease.

Best,
Laurie
 

corwin

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Joined
Oct 20, 2015
Messages
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Reason
DX MND
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01/2016
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vn
This LLMD has a neuro specialisation and is really good. He is specialist in Lyme and restoring of neuro damages, and yes he told me that lyme can go into ALS. But you need some co-infections also.
 

Atsugi

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12/2010
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Corwin, two things:
First, Jellis had very serious symptoms including a badly slurring voice.
Second, by concentrating on Lyme, you're getting ahead of yourself. As Laurie suggested, back up a bit and see a medical doctor with a broader range of skills.
 
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