I know we are all going through the same and it is very frustrating that doctors have no answers, but we are suffering with the symptoms.

GRIN- Global Resgistry for Inherited Neuropathy
Join GRIN! About The Global Registry for Inherited ...
hnf-cure.org
https://www.hnf-cure.org › grin-patient-registry › join-gr...
GRIN Global registry for inherited neuropathy from http://www.hnf-cure.org
The Global Registry for Inherited Neuropathies (GRIN) is a global patient-focused research database that represents patients and families via vital Natural ...

GBS - Guillain-Barre Syndrome
Also go on website: NORD - National Organization for Rare Disorders

You just have to keep searching to find your own answers.

I saw my endocrinologist and they can't give the hormone CCK because it has many side effects which are irreversible. She also suggested to see a Neurosurgeon because she thinks it has to do with the Vagus nerve. I'm going to see my Neurologist first in June and hopefully will start getting answers and referral to Neurosurgeon.

I hate to say, but my muscle pain is coming back, but only when I wake up. Muscle are very stiff in neck, shoulders, upper arms and calfs. I've started getting spasms again in the calfs during the night. Once I move around it seems to get better. My GI symptoms have stopped and I pray they don't start up again. But, two doctors agree it is the vagus nerve causing the GI symptoms.

Hope this information is helpful. I pray for all of us!