Well I saw my rheum yesterday and according to all my tests I should be better, not worse. We were not quite sure what to do, but did decide to try to get me off prednisone very slowly since I have no inflammation showing up now and leave the imuran the same. I felt she hardly paid any attention, didn't ask questions, exam me or even look at the symptom form that they have everyone fill out. Pretty frustrating.
My neurologist wasn't in but the one I saw was great. She thinks I have a low level "brewing" vasculitis rather than an aggressive one. Did an emg/ncv and it was better than normal even in the bad leg, so whatever this is, at least the meds are helping with that. But it does not make sense that I still have parathesia and progressing sensory neuropathy, so she did biopsies for small fiber neuropathy and some tests I have not had before that might explain the dropfoot I am getting.
She also felt strongly that I have sleep apnea and wants a sleep study. She said treating that could make a huge difference on my quaility of life. Finally, a test I will thoroughly enjoy! I am still wondering if I have fibro, I think that could cause some of the symptoms we thought should be gone. I forgot to ask, so I'll ask my pcp. I know I have at least 6 of the pressure points.
So I guess overall it went well, except for my irritation with the rheum. All that worry about increasing meds was for naught. I figure if we decrease the pred and I get really sick maybe that will help show what is going on.
STill dealing with the bladder problem, that really really sucks. My urologist left me a long message on my home phone today which can be clearly heard all over the house, while the carpenter and tile man were here. Oh well.
Sorry for the very long post.
Hi Laker, it sounds like a good day overall. I was especially happy to read about the vasculitis "brewing" instead of full blown. If my understanding of vasculitis is correct from my own experience with it, "brewing" is so, so, so, much better and much less dangerous. So...with your medications in place you have an excellent chance of nipping that nasty vasculitis in the bud altogether. Just make sure you alert the doctors immeidately if you have any problems at all when you lower the prednisone. You don't want to give the vasculitis a chance to get stronger.
I like the sound of your neurologist. It sounds like she's really on the ball and giving you good care. I'd be very interested to know if/how they finally determine what's wrong with your leg. My nerve study was also normal, but the leg most definitely is not. Lately I've found that exercising the weaker leg very aggressively and keeping after it daily makes it so much better. The weakness is still progressing slowly, but I can make it even slower by working the weak muscles very hard. Have you tried that?
Hi Jesse,
Lately I have been walking in the mall at noon and although the foot seems to get worse the longer I walk on a particular day, I think that overall it has improved some since I started. I also got an elliptical, and although I find it hard I force myself to get up and use it in the morning. I felt so much better on the days I used the elliptical that I do it every day now. It is still so HARD to get up and do it. I am worried because over the last couple weeks my right foot has started to change, but I feel better knowing the neurologist really paid attention and seems to be investigating the causes. I am hugely relieved that the other nerves are recovered. You are right, it did go well over all.
Laker - I am glad you got some decent care from at least one of your specialists and perhaps some progress will happen now. I am so baffled by these rheumatologists who practice bad medicine. Oh well, "D" is for diploma. I am very happy for you. Cathy[QUOTE=Laker]Hi Jesse,
Lately I have been walking in the mall at noon and although the foot seems to get worse the longer I walk on a particular day, I think that overall it has improved some since I started. I also got an elliptical, and although I find it hard I force myself to get up and use it in the morning. I felt so much better on the days I used the elliptical that I do it every day now. It is still so HARD to get up and do it.
[/QUOTE]
Laker, maybe doing both on the same day is too much? Maybe you'll be able to do both later, with the disease under more control, but perhaps walking on one day and using the trainer on the other would be better. I'm no expert, just going from my own experience. I used to exercise faithfully but graudally had to stop completely because I was always hurting myself. After the meds kicked in I found I could CAREFULLY go back to mild exercise and only recently became more aggressive. So it just makes me wonder, when you mentioned discomfort, if maybe it's just a little too much. I never believed in "no pain, no gain." If your experience is like mine, your muscles should actually feel good from the exercise. I know we're all different, but your medical issues are so similar to mine that it makes me think we have, or should have, other similarities in results. I don't know, I could be all wet here. I just think there's a fine line between helping and hurting ourselves when it comes to exercise, at least until we're under good medical control.
And I totally get that part about it being SO HARD to keep up with the exercise routine. I HATE IT!!!! I'd rather do almost anything else.
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