[Mary Hash]

My brother was diagnosed with GB 3 weeks ago. He had flu symptoms and pneumonia that was not detected until he went to the hospital due to paralysis that set in 72 hours earlier. He soon could not breath, and they worked on a collapsed lung, then a swelling of his left side due to a blood clot in his lung (possible due to the shunt). He is totally sedated as when he wakes his blood pressure raises sky high. Treatments of Immunoglobulin has not worked and treatment stopped. Now trying plasmapheresis that was started yesterday and so far no affect - hopefully it will. Doctors say over and over this is deeper than the nerve endings so I looked up and found CIDP is considered the chronic disease of GB. Your website says corticosteroids may be used to treat CIDP but is harmful for GB. Questions: What if plasmapheresis doesn't work? What's next? Does one have to wait 8 weeks to determine if the prognosis is CIDP? Are there Clinical Trials I should be looking into and where? Is there a doctor that specializes in CIDP/GB you can recommend?

[lpsndpts]

Hi- Mary. It looks like you haven't received any replies and thought I might help. My husband was diagnosed with CIDP last August, 2008. High dosages of prednisone (up to 100mgday) and Ivig's.
The Ivig's had negative results and he became bedridden and wheelchair only after 3rd treatment. Physical Therapy did wonders but muscles need work and home health care just isn't enough....

We just attempted to retreat with Ivig's but had to stop because he had a high white cell count..a week later he was back in hospital after contracting pneumonia when there a week previously.

Plasmapheurisis seems to be a route doctors recommend. For CIDP, there are also other meds such a Methotextrate, Cellcept and a few others commonly used for cancer/leukemia. Nor sure if that is also true for GB.

I recently started communicating with people of websites for CIDP and they have been very supportive with their stories as well as referring to others and doctor info. As far as clinical trials- put in search under "clinical trials GB" or spell it out and maybe that will help also.

Keep up the faith, may the force be with you, keep praying. Hope things are going better for your brother now. It's horrible to go through so much. I guess you can reply to this to update how everything is doing. Stay well,lpsndpts