Thank you everyone for dragging me out my depression, again. I am still waiting to hear about the IVIg, I’m not sure what the hold up is but if they haven’t called to schedule by tomorrow I will call my doctor back. I have not had IVIg since August last year. They started me on Cellcept just after the last IVIg and then took me off again because of the “fever of unknown origin” which my current neurologist says is due to autonomic nerve damage. For this reason my previous neurologist also did not want to try IVIg because they did not know what was causing the fever. So I’ve been going up and down for over a year now and most of the time I bounce back on my own after a few weeks. This time, however, I ain’t bouncin’ back like in the past, I’m dragging myself from bed to bathroom and using the walker and cane again. Although it is still progressing slowly my husband is worried (me too a little) because last time it went very slowly for a long time and then sped up within a week to land me in the hospital unable to breathe. I’m not having trouble breathing or even a twinge in that area but we’re still dealing with the initial panic that the symptoms are coming back. Yes, so far, the damage is in the same areas and progressing the same path so that at least is something familiar. On the other hand, there wasn’t too much of my body that wasn’t effected the first time around either so I’m hoping the IVIg jumps in before my one good limb gets stupid on me too. No, No, No I don’t take prednisone anymore and with luck and good physicians I will never take it again. I suffered most of the side effects listed, gained 38 pounds which I STILL HAVE, and it didn’t do anything except make me bitchy to the one person who has been my lifeline through this whole thing. (That would be my hubby!) So no more prednisone. I gave it a fair shot, we tried it 3 times, I gained 10-15 pounds each time, spent my days hungry and crabby and my nights pacing the floors and in between running to the bathroom. It’s interesting that prednisone helps you because I’ve heard and read that it typically does not help with CIDP. Good for you! I’m not taking anything except baby aspirin and B vitamins right now but I have 5000 cellcept pills in a dark drawer, probably outdated by now and I don’t mind taking immune suppressants. I rarely get out anyway and though our house isn’t spotless it’s usually cleaner than your average restaurant as evidenced by my husband’s tendancy to get salmonella poisoning when we eat out but he doesn’t get it when we eat in. 😉
Thanks again for cheering me up you all. I am not able to sit at the computer for very long right now but I’ll check in when I am able. It’s 3:00 am here, hee hee, but my body has been sleeping and resting a lot lately so it was ready to GET UP!