Getting from point A to point B is mind-over-matter now. The excruciating pain in my lower back I'm told isn't electrolyte-related and is part of the "Myositis" issue. My Hepatologist, if I understand correctly, can't make that diagnosis definitive, as it requires a rheumatologist to do so. This can be very difficult, however, unless one is lucky enough to find a rheumy doc who is also a D.O. Now, I won't go into the whole 'what is a D.O.' thing here because it would just take too much time. What I will say is that I prefer D.O.'s over the average M.D. because their D.O. training means they're trained and take the stance of... looking at the whole person, rather than the parts. In other words, they look at the big picture. My GP is a D.O., and every specialist I have to deal with I tried to choose based on whether he/she is a D.O. (such as my cardiologist).
Mind over matter, literally...
I have to WILL myself through every step I take now. The muscles in my lower back literally LOCK into place the second I stand, preventing walking in a normal way... or sometimes walking at all. In other words USING those muscles is almost out of the question. The leg weakness, the arm weakness, I'm told, is also due to the AIH and most likely even more to the myositis. Myositis is not something anyone wants, trust me, and I'm not sure where it will end.
Geting a definitiv diagnosis isn't really going to be so easy. AI diseases are complex, and many of them have to be, in part, a diagnosis of exclusion, though not always. Many autoimmune antibodies aren't found to be present in about 20%-25% of people with AI disease, and the other factors are sometimes hard to catch. When someone spontaneously goes into remission... that makes it more difficult. With aldolase levels elevated again, with the problems with the muscles in my back, etc... it could be easier to get a diagnosis. Not sure.
Eventually, the Aldolase levels could normalize and stay there, though myositis could be rampant. The reason for this is that Aldolase will decrease as muscle tissue is destroyed, so it's not the most reliable predictor for severity or even presence of the disease. Where I'm lucky in this is that I'm being treated for Autoimmune Hepatitis, which includes Imuran/Azathioprine... which is used to treat myositis as well.
"You're Aldolase is elevated AGAIN. And THAT'S while you're on prednisone and Imuran! Imagine what it would be if you weren't."
He's right, of course. The Aldolase levels are elevated but still somewhat lower than before treatment. Maybe we can stop the destruction of muscle before it gets too bad.
So what am I to make of this? Don't know. Just waiting for the definitive diagnoses so focus can be shifted solely on getting these things in remission.
Prednisone tapered another 5mg, Imuran from 50mg/day to 150mg/day.
This is where things get risky. I can't get a cold and need to avoid situations where infection can happen. With my immune system suppressed to this degree, even a cold can land me in the hospital. So precautions must be taken, and I have to pick and choose where and when or if I go in public and take precautions accordingly. I have to stay clear of sick people at all costs.
I can't do a flu shot until I'm off the prednisone, so that will complicate things further. I SHOULD have gotten a flu shot weeks ago, but I had no idea I would need one that badly. Lesson learned.
Bottom line today is that I'm forcing myself to sit here at the table, to type, to keep on keeping on without succumbing to the call of the couch. Yeah, I would like nothing better than to completely veg out on the sofa... or crawl into bed for a long nap. I have no idea what I'm to give in to.
My next bout of research, though I've done a little preliminary, is to see what I can and cannot do with regards to exercise given that I'm most likely dealing with myositis. The commercial grade (gym quality) exercise bike arrived yesterday and isn't put all the way together just yet. No biggie... it will get done, and I need some time to figure stuff out.
OMG... I'm so tired, my muscles ache. But I think this may be due to the increase in Azathioprine. Boy... am I in for a rough ride, I think.
Signing off.... for now.....
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