Jean, from what I’ve read CIPD is a very rare disorder and extremely difficult to dx. In the neurology community it is not well understood. This has been conveyed to me at the Clinic where I am treated With Plasma transfers. As for my neurologist she is all over the place as to what I can expect. One major problem is that its onset can be slow and subtle, so smyptoms can be mistaken for some other ailment. Indeed not all of us have the same symptoms. I started out being unable to swallow many months before pain kicked in and I was hardly able to walk. Consequently a lot of neurologist simply would rather not deal with it. The worst part is that CIDP is a relapsing disorder. Things start looking great and suddenly down you go. Of course you’re right in saying that we have to bring it to the attention of mainstream medical science. We need more research grants to address the truly extraordinary things that go on. I’ve discovered a group of people who were dx with GBS only to be dx three or four years later with CIPD. Did the GBS turn into CIDP or are the two condition so closely related that it is more common than we know for GBS to become CIPD? I’m like you; the more I read the less I know. All the best. :confused:
I am an American but am watching a New Zelander who is getting a stem cell transplant in Chicago IL USA at this current time. If you are on Facebook you should be able to find him. Put in your search box “Help Jon Heal” to find him.
Makes for interesting reading and opens new doors for other options.
This whole GBS and CIPD is bringing me down. From what I’m expericencing and reading we are plagued with a disability once this all affects our bodies and depresses our minds. Don’t like being a cripple, dealing with all the drugs for neuropathy, fatigue, and sleeplessness. Can’t believe that something like this can be so devistating. How is one supposed to work under these conditions? I’m only 46 and my work performance is suffering. Need that damn job and it’s insurance. We don’t have a dissability program. I think I’d have to quite my job, file then wait while I lose my house and dignity. Where is my winning lottery?
Looking forward to April 15 to meet some of you. Sorry to be such a downer, but this sucks.