Originally Posted by AnnieB3

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? No lupus, I've always had ANA 1:80 rheum says that's too low for lupus. Rheum dx includes undiff. connective tissue disease. I've also had sero negative sjogrens & fibromyalgia for over 20 years.
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. I asked my endo to order the CK because I was concerned I may have myositis. He ordered it and it was 2400. I had not lifted weights for 8 days prior to the test and I have significantly cut back on the amount of weight (in #'s) that I lift ever since the high result. I think that is why the CK has gone down. I've been lifting weights almost 30 yrs now and I wonder if I was hurting myself doing it because I have a muscle disease.
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. Diplopia at least for past 15 years. Also, my eyes felt weak and ptosis both eyes (alternating), positive ice pack test since the beginning of 2011. Mestinon helps the weakness, some of the double vision and ptosis. Not completely though.
Is the hair loss on your head? Eyebrows? Has it been termed alopecia, or has a cause been found? Derm said it was telogen effluvium, Endo said it was from a generic thyroid med formulation change. He put me on name brand in Sept and very slowly it's stopping. The loss started almost a year ago.
Have you had your vitamin D3 and B12 checked? Yes, they are always normal.
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?Always morning fasting between 8-9 am because they also monitor my cortisol. I have hypercortisolism and hyperinsulemia. I get labs (both blood and 24 hr urine) more than 6x year.
Have you spoken to a cardiologist about peripheral artery disease? No, but I have a vascular surgeon that monitors my aberrant subclavian artery. When I got the chilblains, rheum referred me to get a vascular ultrasound to test Reynauds, my father has it. I have been putting that test off.

Has anyone done a celiac disease antibody panel? Multiple tests negative. Sister is positive.
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. I blame it all on autoimmune issues. I just want to know what it is and how to fix it so I can try to live as normal of life as possible.
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've had asthma my entire life (I'm in my 40's). PFT's at Dr. are always normal. At home my peak flow has been down to 250, normally around 400. I do not think they have ever tested MIP MEP - I will have to research that.
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. I agree with you.
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. The problem is I have a lot of specialists (I am regularly seen by Endo, Neuro, Rheum, Gastro/Liver, Neph/Kidney, Vascular Surgeon/Heart). Each Dr blames the other for what I have, Neuro blames my thyroid, Heart says my MG causes most of my dysphagia, not the aberrant artery, etc. My Endo is my best Dr and he has always helped me out. I am thinking about getting a second opinion at UCLA. They can review all my records prior to my visit and see it from the outside.
Annie