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Fookonson

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State
OH
City
Port Clinton
Hello,

Did not know if this was the appropriate category to post in, so my apologies if that is the case. Have perused/read several threads on here for months now in search of some guidance. I have two specific questions/topics:

1) Had to move for work recently so finding a new GP (first appointment on Monday) and would like to get a workup with a solid neurologist. Was curious if anybody had recommendations for practices and/or specific neuro-muscular specialists (if that is permitted per the forum rules) that they would recommend in Cleveland, OH? While I have several questions that I would love to ask here, I realize the best path forward is to work with a competent neuro. Would like someone solid with EMG. Any thoughts?

2) Experiencing a few curious symptoms... been persistent and progressing for last year. Went through the ringer with several tests (blood, brain/spine MRI, CT, etc). All came out negative, which is a great blessing, but the issues persist (hence my pursuit of a neurologist above).

One curious item that came up was a positive test for a MTHFR mutation. Have any PALS/CALS come across this before? If so, has anyone found any interesting research/info on the topic as it relates to neuromuscular diseases? Much of what I read delves into heart disease and miscarriages, however, the mutation seems to cause a decreased ability to methylate... can't process/use vitamin B/folate properly... you probably see where I am going here.

Thank you all for your time and consideration... it is very much appreciated.
 
Ohio, this is the right place. Case Western and the Cleveland Clinic have solid centers. However, one or the other may be in-network for you. I am sure Ohioans will chime in. But really, I would consider and discuss w/ the GP a start with the medical genetics service since the list of possible manifestations in your case crosses multiple systems.

Best,
Laurie
 
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