Reply To: CIDP again?

April 27, 2015 at 4:58 pm

Thanks, I know what a centifuge is. I had several plasma exchange treatments, which use a centrifuge in the equipment to separate the blood, as you say. If it works for you, stick with it, but it is understandable that insurance companies won’t want to pay for any more treatments than necessary. You need your neurologist advocating for you on what you need. IvIg is expensive also. Generally, one does one or the other, not together.

It is not possible to identify a cause of your CIDP. It is chronic by definition, but can be in remission for a long time, indefinitely, as you know. As far as fixing it, there is no treatment considered a permanent fix except the stem cell procedure. That procedure is still in clinical trials as far as I know, and it is doubtful you would qualify because of your age.

It seems to me that you are not getting very good support on this condition. When I had the spinal fluid protein test it was done in the hospital (or nearby) and the result was available the next day. They also had the plasmapheresis equipment and trained nurses in-house. Perhaps you are in a rural area. But I don’t know why you would need a spinal test if you were previously diagnosed with CIDP and successfully treated for it.