Reply To: Your recovery, how's it going?
Always look forward to hearing from you. By the way, are you in Cincy? I am a Buckeye by birth. Grew up in a small town near Lima in northwest Ohio. Have family in Cincy and Columbus. Been in Texas over 30 years but still a Buckeye fan. Here is my 15 month report. Doing pretty well like you. On IVIg once every 3 weeks instead of 2 and seems to be fine. Never had steroids. However, after an infusion, I used to get a boost, though not much of one, now the first week after an infusion is the worst. Stubborn headache (controlled by Advil) and more leg/ankle symptoms, but again nothing too bad. The next 2 weeks are pretty good with some days like I don’t even have CIPD! The lyrica continues to keep the nerve activity at bay. I too am pretty zonked at the end of the day but I also changed my work hours to 6 a.m. to 3 p.m. so I get home early and beat the horrible Houston traffic as driving can still bother me sometimes. I have gotten used to driving without my shoes on and that helps my feet feel better. I haven’t ever heard you mention inflammation, which is still one of my symptoms but nothing like it was in the beginning. I think I am and have been in the “stable” category for quite a while, which my neuro says is the goal. I would rather he tell me there is research being done every day to solve this problem but I will take what I have and just live with it. Others seem to have it much worse. I still fear the word relapse but for now I am keeping that word out of my dictionary:) I need to eat better and loose some belly fat, looks pretty silly on a man that only weighs 145. I feel I am still not strong enough for a major exercise program but hope that will come if I start to feel less tired after a long work day. Take care and thanks for the updates. Jeff