Progress

Year ago I experience a severe balance problem that affected my walking and definitely stopped my cycling and skiing. Lately I have had the feeling that my balance was improving so I tried cycling again. To my satisfaction I experienced no difficulties and definitely did not crash. I have now ridden about 35 miles in three days with no problems. This is just in time for ski season. If I can cycle I'm pretty sure I can ski.

I attributed my balance problem to the CIDP and the doctors seemed to agree without absolutely saying yes it is the CIDP. Bottom line is I don't think they know. A month ago I ran into a high school classmate who described a similar problem and Meniere's disease. Basically it has to do with the inner ear and is not treatable except for reducing salt intake. So that is what I did, eliminating food and drinks that were high in salt. I didn't go overboard and eliminate all salt just those items that I knew were high in salt. I think it made a difference. At any rate I'm back on the bike and happy.

October

The latest blood test in June was normal, but my body doesn't think so. The test came back showing no autoimmune indication. First time in five tries. Since then I have had two MRI's one of the brain and one of the neck. The brain MRI showed nothing ..... old joke. They were looking for signs of a stroke and didn't find anything. With the neck they were looking for nerve problems caused by the spinal column, again everything looked normal. I meet with the new neurologist again in two weeks to discuss the latest MRI and where we go from here.

The hands still feel numb as I am typing and the legs still have numbness. I believe everything feels worse in warm weather and when I don't exercise. Balance is still an issue, some days are better than others and there is a little improvement over a month ago. Then again maybe it is just wishful thinking on my part.

Continuing Story

It has been 7 months since I was treated with rituxan. I have had several improvements. The biggest improvement is my balance. It is still not normal but I can carry on like it is. I've noticed at the gym that my balancing exercises are getting easier. As a result of the gym workouts my strength is improving. I seem to have more energy and am able to work harder both at home and at the gym. I take fewer naps.

Early in June I took another blood test but I probably won't know the results until mid July. I'm hoping the blood numbers come back close to normal although I'm thinking I might need another rituxan treatment in the fall. Here I am self prescribing but then I'm not sure the doctors know much more than I do. My original neurologist retired and I will be seeing a new doctor later this summer.

Neuropathy Update

It has been two months since my last treatment with rituxan. So far there has been very little improvement. My balance is still in question but is getting marginally better. Cycling and skiing are still not an option.

I'll be taking another blood test to see what the numbers are but I'm holding off until June or July thinking it takes the rituxan some time to work. Previous experience says best results will occur after 6 months.

Another note there is a CIDP group on Facebook which has put me in touch with a few people with my disease. My condition is rather rare, being able to compare notes with others like me is helpful to understanding my condition and what has worked for others.