Hi, HDJJ. Welcome to the forum. I'm just going to throw out a bunch of thoughts from the information you've given. It's so hard to say what is going on, but you can at least muse all of this over.

Do you have lupus? Some of your symptoms (rash, hair loss, chilblains, etc.) point to that. Have you been tested for it? A dermatologist can do a skin biopsy to see what type of rash you have. You should really see one who specializes in lupus or other inflammatory conditions. Did the sun or fluorescent lights precipitate the rash?

Myositis, and a CPK, can fluctuate. Had you been exercising within 5 days of that first CPK that was high? Have you seen a rheumatologist? They normally deal with any "itis" or lupus, not neurologists. It might be useful to have a second opinion with one.

http://www.myositis.org/learn-about-...is/blood-tests

Do you have double vision? Have you seen a neuro-ophthalmologist to test for that? Do you have ptosis (droopy eyelids)? MGers can also have droopy eyebrows and the entire face can droop.

Is the hair loss on your head? Eyebrows? Has it been termed alopecia, or has a cause been found?

Have you had your vitamin D3 and B12 checked?

Do you have a primary doctor who checks any side effects or interactions of the drugs you're on? You say that you've had electrolytes, etc. done but have they been done in the morning, while you are fasting?

Have you spoken to a cardiologist about peripheral artery disease?

Has anyone done a celiac disease antibody panel?

It's quite possible that there is more than one thing going on here. So many of us do have more than MG going on, unfortunately.

Since you are short of breath, have you seen a pulmonologist to see what type of breathing pattern you have? If so, have they done MIP and MEP, which show how you are doing at breathing air in and out? That is a test more specific to neuromuscular diseases. You should at the very least see one! Difficulty breathing is nothing to mess with, especially for MGers.

I'm sorry you have so much going on. It's obvious that the doctors you're seeing aren't thinking about the whole picture. You might have MG but it sounds more inflammatory in nature, at least to me.

Please do some more doctoring with other specialists, if you can. They might help you narrow down what is going on. I hope you can get this figured out, so that you can have the very best treatments.

Annie