Quote:
Originally Posted by LouLou1978
Hi Healthgirl,
Thanks for your reply.
I wrote to a professor of neurology who deals in genetic neuropathies. He advised they are in the early stages of their research. He did say that if my sister's skin biopsy came back as positive then he would review us but he said he can't guarantee it would help with our clinical care.
I was also wondering, could we both have some sort of genetic auto-immune type of issue. I mean if it was then could the ivig still help? The neuro insisted that if it was genetic IVIG wouldn't help.
Please also keep us up to date with your investigation . I hope it is all going well so far.
Thanks
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There is Ehlers Danlos Syndrome that runs in families and can go undetected or misdiagnosed. This can cause neurological and connective tissue problems and very commonly dysautonomia. I'm pretty sure I have it...or at least I have every single symptom, but autoimmune diseases can look similar. I'm betting they will check me for this when I go to Columbia.
Also there are metabolic disorders that run in families. I'm finding that people go years with out a proper diagnosis until they finally get a geneticist. My one neurologist didn't see the point since I already have a "diagnosis", but I think it's important to find a cause so you know what to treat and not to treat and to stop guessing.