MAD
Multiple Auto Immune Dieases. Yes that's my own term. I have symptoms of a number of them. As always have had type 1 diabetes since age 5. Controlled well, my A1C hovers around 5.0 to 5.2 give or take.
Thing is all the stuff has "test" that is not definitive. They have mentioned Lupus which explains a lot and a small percentage of people never test positive on the ANA test.
Same for MS. Even a lumbar puncture is not 100%. I had the minimum required for MS, but according to the Mayo after more than 5 years as a type 1 diabetic will show positive on that, be nice if "anyone" mentioned that before I paid for it and had it done.. I don't think it's MS because I have zero symptoms and never had spacity (twitch) and after 12 years you have to have a relapse to count as MS in X years which I have not had.
Doesn't matter, it all comes down to NSAID, corticosteroids and such. Doctors are dealthy afraid to give corticosteriods to a diabetic. When this started I did 5 days of 1,000 mg per day infusion of corticosteroids and my blood sugar never broke 300 and was told to keep taking it as long as it didn't stay above 300.
But how am I doing? Meh. The muscle weakness is a killer mostly in my upper body. I have a 10 pound barbell and I can do 5 curls and it takes me two days to recover. I can pick up more weight but I avoid it. Like I got a new computer and carried in from the car and sat on my desk and it was killer.
The inflamation is second. I can tell quickly when I have a flare up and can almost feel the blood flowing through me. I take ibuprofen or naproxen when it starts and if it plows through that I take prednisone.
Just in the last two weeks I have a new one with inflamation. Since this started my heart heart has gone up and I take heart medication that is for blood pressure (mine has always been on the low side) and it keeps it around normal. But two weeks ago for a second I thought I was having a heart attack. Very very tight across my chest, both arms pulled in and heart rate went up.
I popped another heart pill, ibuprofen, tylenol, and some potassium just in case. Used a heating pad and after about 20 minutes it settled down. Blood pressure never went up and the pain was massive down both arms muscles not like a heart attack and soon as it passed it was back to normal. It sucks though.
As of yet no doctor has been able to explain why when this first started I lost 45 pounds in a few weeks and I barely moved and stayed in bed the entire time. The weight loss didn't last long and I'm around 195 or so now which is my normal weight which considering I don't do alot isn't bad.
Dumb thing a doctor said, a rheumatologist said "you might have Lupus, but until you fail the ANA test it doesn't matter, your insurance won't pay for it". Umm maybe I should bring my bank and investment statements with me to get a diagnosis. For Lupus I think most take NSAID and corticosteroids which aren't exactly expensive. I did get a prescription for ibuprofen which seemed odd. I just ordered a big bottle from amazon.
