Dermatomyositis, huh? Sorry. My only overt symptom was Psoriasis on my scalp. Internally had high glucose and blood pressure, "watermelon stomach," pericarditis, and several others. All docs asked if I had lupus. When I finally got a rheumy, she recognized polymyositis immediately. Treating that mad all the others go away.
If you like the British humor, you can pick up a full copy of Hitchikers Guide cheap. I've bought 3, all got borrowed, now I need another. The late Douglas Adams was a brilliant humorist.
I do enjoy British humor. I really enjoyed Monty Python and the Holy Grail. Have you seen that? I'll have to check out the Hitchhikers books.
Glad that you had a rheumy that was able to recognized polymyositis right away, some take so long to figure it out.
Arthur Dent said:
Dermatomyositis, huh? Sorry. My only overt symptom was Psoriasis on my scalp. Internally had high glucose and blood pressure, "watermelon stomach," pericarditis, and several others. All docs asked if I had lupus. When I finally got a rheumy, she recognized polymyositis immediately. Treating that mad all the others go away.
If you like the British humor, you can pick up a full copy of Hitchikers Guide cheap. I've bought 3, all got borrowed, now I need another. The late Douglas Adams was a brilliant humorist.
Love Monty Python. Have Life of Brian on DVD. There have been 2 movie versions of Hitchhiker's Guide made over the years but both suffered from trying to get too much into one movie. I was really lucky with my rheumy. My crappy insurance from the hospital I worked in wouldn't pay her, so she took $20 per visit until I got disability.
On this and other sites there seems to be a terrible lack of understanding about myositis. Docs don't study the immune system much unless they do a residency in rheumatology. That's why it's so hard to get a correct diagnosis. In researching Poly I've read that you don't notice weakness until you lose 50% of your muscle mass. In nursing school I was taught that after age 30 something we stop making new muscle. I'm 61, so the muscles aren't coming back. My rheumy suggests passive exercise in a pool. Hope this helps. If your docs are asking for the impossible, you need to refer them to medical books or Wikipedia. And don't beat yourselves up. You will always lose. Paul
So we can't rebuild muscle? Just slow down what we have?
You can tone what you have left, but unless they lied to me, once your old enough, what's gone is gone. Just gotta live life at the speed of myositis. There seems to be such a wide variety in peoples conditions, that will be different for each. I suspect that the variety is based on the age at which you get the CORRECT diagnosis.
I would love to be wrong about the muscle thing, but my rheumy, a neurosurgeon, and a rehab doctor agree with me. Meds to suppress your immune system so it will stop picking on your muscles, and make the best of what you've got.
It feels like you're right, the doc today said that the thing that is most difficult to get back is stamina and I can concur with that, I might be able to walk normally and at pace now, but not for too long. Your phrase "live life at the speed of myositis" pretty much sums it up.