Annie, I remain confused and I kind of understand why you are not getting good responses by doctors. You need to go to the right doctor to help you with a particular issue.

First of all, an internist is the doctor to go to for a vitamin D issue, not a neurologist. Neurologists deal with anything having to do with the brain, spine, muscles and nerves. An endocrinologist can help you with a vitamin D deficiency but usually only as it relates to an endocrine issue.

Myositis is a systemic disease and is usually handled by a rheumatologist. Have you been diagnosed with some kind of myositis? Polymyositis? Some neuros do diagnose and treat myositis but it is an inflammatory disorder and is best treated by rheumys who are experts at those disorders.

If you have Sjogren's, then that is what is causing all the dryness of mucous membranes and associated symptoms, not a vitamin D deficiency. Talking about the vitamin D deficiency is confusing other health issues. A vitamin D deficiency is not caused by the drying up of mucous membranes but by not enough sun, inability to convert to D, parathyroid disease, etc.

I would highly recommend, again, that you see a rheumatologist to determine if you have myositis, what symptoms are associated with it and what treatments you can have. I also highly recommend that you get tested for lupus by a rheumy.

So there was no mention of MG, no talk about diagnosing it or doing a SFEMG or any other MG testing?

I am trying to help you to understand that who you go to and what you say to them affects the care you receive. No, you aren't to blame for doctors treating you poorly but it doesn't sound like you got anywhere of significance today. Unless you did but were too tired to write about it.

Inflammatory disorders do cause significant pain. MG does not. Since you are in a lot of pain, chances are you do have some kind of "itis" and need help from a rheumatologist.

Has anyone even tried to figure out WHY you have a persistent vitamin D deficiency? That would be an internist's job. Has anyone checked your liver function? Cholesterol levels? An endocrinologist can determine if your parathryoid has a problem. They can also do a metabolic panel to check your electrolytes, kidney and liver function, etc.

I simply want you to get the right help with the right doctor. And it doesn't sound like that is happening. It only confuses the issue when you go to a neurologist, for example, and discuss vitamin D. You need a variety of doctors right now to help you but you have to keep the discussion relevant with each one.

I hope you will line up some appointments and get more specific help for yourself.

Annie