Sorry for the very long post … just sharing my experience.
I still had good mobility when I went for my first evaluation in Jan (used the home away from home program for lodging). After evaluation, I was considered not to be too bad off and was initially declined from the sct program. The NW neurologist I saw, Dr. Allen, didn’t feel I had tried the Immuran at a high enough dose for long enough. Additionally he felt I didn’t exactly meet the criteria for the study since my muscles weren’t impacted from the CIDP. I have the sensory variant and he was looking for that muscle involvement for this study.
I went home a little dejected (ok – maybe a lot) but then Dr. Burt called my neurologist, Dr. Blum, and they agreed on a trial treatment plan for me. They also all agreed that IVIG/PE/whatever is not intended to be a lifetime ordeal. Treatments are all aimed at putting the CIDP in remission, so he considers it a failed treatment if you go off it and get worse. I have been on IVIG since Oct ’08 and was getting worse – the last year was weekly and Dr. Blum wanted to make it twice a week! Like you, I just don’t see myself strapped to treatments for the rest of my life – especially when I am so close to retirement and have always been an active person – I want that back!
So I followed the plan and went off the IVIG and upped the Immuran and I did get worse – fast. And to make it even more interesting, I tested positive for Sjogren’s and got started with a rheumatologist! Dr. Burt called me back in May and I went through the evaluation again (that’s when I stayed at the free housing). Dr. Allen was still uncertain about me meeting the study criteria, but since they all agreed what I have is autoimmune, I was accepted as a compassionate case.
I love the way things can come together (God is so gracious with me!!) … because I was initially outside of the study, my insurance paid! Northwestern contacted them for me to get a bone marrow transplant and it went through quickly. Who knows, but it might not have been the same story if I had been accepted back in Jan??? Anyway, I was back in Chicago early July and received my stemmies back in Aug. Besides all the required tests, I also had a lip biopsy as a more definite test for the Sjogren’s – it came back inconclusive.
Another CIDP friend went through a similar situation – her other complication was RA. She also recently completed her sct, but like me, went through the evaluation twice. Additionally, I have another CIDP friend that had two evaluations – hers with a possible secondary diagnosis of MS.
I’m not saying all this to discourage you, but rather to encourage you. Each person that gets turned away gets a reason and it is worth exploring. The common theme between the three of us is that we all still had good mobility. The other common theme is that we all went through the sct program and are all doing better.
This is a really awesome journey you are taking – a journey of hope. My wish for you is that you can relax and find joy in that journey,