Thank you for sharing.. It makes me feel not so alone. Every time I turn around I have a new "unusual" diagnosis. I've not even revealed ALL of my disorders on the Mayo connect yet, but I appreciate the mentor help here!
I have been instinctively already been doing all of these things too. I can choke so easily . but the Gastro dr's nurse told me that there is nothing that can be done for it but that they want me to come into the clinic to discuss it with the Doc. I live in NE Missouri. I want to go to the Scottsdale Mayo again I used to live in Mesa and went there in like 2009. I hope we can go forth the winter. If so I'll see about making visits to address everything at once.
So you are saying that Neurologist would handle this disorder, hmmm. I have one for my (FGFR3 Antibody cause)PERIPHERAL NEUROPATHY AND ONE FOR SLEEP APNEA. THIS IS HELPFUL to know what you are doing and I can get an idea of who to see. I'm sorry for your loss and I understand how the genetics can be causing you distress..I am intrigued that this is neurological as it would go along with my other Neuropathy issues, possibly caused by the antibody!

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