Reply To: Not diagnosed..need help.

Hi Canuck,
My CIDP has been up and down over the years. Had it in remission a few times, but it has slowly progressed the past couple of years. I’m happy to share my experiences with this bummer disease, but please remember, everyone seems to respond differently to the various treatments being used, so what stops the progression for one, may not work for another. Currently I am doing plasma exchanges every three weeks with an IV dose of 1000 mg Solumedrol immediately after the exchange. I also take CellCept, 2000mg a day. The lack of treatment for my GBS is ’85 caused permanent nerve damage, so I was behind from the get go with CIDP.
Over the years I have tried pretty much every thing on the market, including several of the newer MS drugs in a effort to stop the progression. Cytoxin worked for a while, but sickness and fatigue caused me to stop. Had some short term success with Ratuxin also. Oral prednisone was helpful , but long term use of this can kill your kidney’s, not to mention the weight gains. IVIG was never helpful me, but many on this site respond very well to it.
While I can’t run, jump and play with the guys, I have been able to adapt to my limitations and enjoy an active life. I still restore antique cars as a hobby and we travel a good bit. I chose many years ago to accept the disease for what it is and concentrate on what I can do, not what I am no longer able to do. The human body is an amazing machine and the ability to adapt has so far, always been there for me. I do use a cane when walking to help with balance and if a lot of walking is involved in an activity, I have a small electric city bug scooter that I use. I retired six years ago and my quality of life changed for the better almost immediately. You’ll see many posts about the effects of stress.
My body’s inability to get this into remission is no reflection on how you will respond to treatment if they do diagnose CIDP, so don’t get down on yourself. It is a very frustrating disease and can really play mind games with you, so stay positive and keep educating yourself so you can ask the necessary questions. Hope you can get a diagnosis so you can get treatment quickly.
Kelly’s thoughts on another doctor is certainly something to keep handy. Keep us posted.
Fred