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FrenchFries

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Hi Everyone,

I'am a 35 year old man. I am experimenting progressive neurologic disorders since november 2012. I have already post in this section, this is kind of update.

I am not anxious neither overreactive. Towards the stickies, I do not have ALS (many of the symptoms listed below are supposed to rule out ALS). In regards to my condition and my analysis, I coudn't find anything else that fit to my symptoms. I do not seek polemic or agressivity, I am just trying to figure out what happens.

symptoms (progressively stronger):
- horse voice, throat and face is stiffer day after day : I now choke on food and have trouble swallowing (I still can eat with caution)
-"stiffness" is spreading in the whole body, i'am feeling now as if I have 80 year old: right side of the body is more affected
- widespread faciculations, "anormally liquid" salivation and all over muscles fatigue
- I have also "smaller" symptoms :joint popin', pain, numbness, anormal skin sensivity to hot and cold, dry skin on my face

Investigations:
> MRI, CT scan, blood test : everything is OK.
My last EMG (the 23th January) vas clean. The neuro prescribed me a 3-days hospitalization (in march) to do genetic tests, muscular MRI, biopsy. ( lucky to be in france for that, tit's mostly free)

Is someone as ever done this kind of tests? particularly muscle MRI?
Thank you!

FF
 
As you say it does not appear to be ALS. How many muscles are they planning to MRI? Seems like that could be a long process?
I know a few people here have had muscle biopsies when they are looking for other things than ALS. That will be your most uncomfortable test!
Genetic tests are usually blood tests. How many vials will depend on what they are testing
You are lucky that it will be mostly paid for. In the US we often have to pay a good part of gene testing ( I had to pay all of mine) and it can be expensive
Good luck. I f you get a diagnosis let us know
 
Thank you so much tillie.
I do not know how the mri will be done. I guess the goal is to see if there is an inflammation.
I will post an update when everything will be done.

For now, i hope they will find something!

FF
 
Thank you so much nikky!
I was reading a post of tillie just before my answer!

My apologize!;)
 
The muscle MRI is done a limb at a time and is pretty fast like all MRIs. Just ask for good music. No big deal, but it shows "what" more than "why."

I would be curious as to if/when infectious dz like tick-borne illnesses were r/o, and whether you've been in endemic areas.
 
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