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Finding experts

Hi.

I posted a few years ago about treatment, but I have not been on for a while.

Backstory: I was diagnosed at 14 (currently 35). I spent ages 20 - 30 on Quinine and had success, but then the insurance stopped covering the medication. I switched to Primaquine and had a bad reaction. So, I stopped medicating.

Current state: My own situation is worse than it has been in a while. And, my son (10 months) was diagnosed with strabismus which seems to have a link to MC (based on some academic research that had too small of a sample size to prove).

So, I am interested in connecting with a Specialist who may have 1) some knowledge of the condition and 2) may have interested in patients. To date, I have seen Neurologists, but they only had a superficial knowledge of MC. In the case of my last doctor, we spent 30 minutes on Google and Lexis-Nexus to determine an alternate to Quinine. So, I would love to get linked up with somebody who has some knowledge outside of passing by it in a textbook in med school.

I have requested the same information from NIH, Rare Diseases and GARD. I searched and spent a lot of time reading the threads here. I am always a little comforted to know I am not alone, but I couldn't find much other than recommendations for Neurologists. I am curious if anyone has tried to reach a level beyond basic Neurology departments.

I am in Washington DC.

Type of Myotonia: Thompsen

Country: US

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Re: Finding experts - by Jan (moderator) - Jan 27, 2015 10:20am
Re: Finding experts - by Jan (moderator) - Jan 27, 2015 10:23am
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