Hello all been on her for a couple days and very Helpful. My story is no different then anyone’s else’s. Was recently diagnosed with CIPD and 20 yrs was diagnosed with retroperitoneal fibrosis. At that time was give 3-4 months to live was about 33 ar that time. Not much know about RPF at that time was put on high doses of prednazone my Doctors and I believe they saved my life. Thinking it was just age and my line of work and years of dirt bike riding was the reasone my legs and wrist Hurt all the time and oh yeah my back. Thinking my RPF was returning in and out of the ER back pain and HIGH WBC. Last ER visit they did a Spinal Tape and my CFS was double what it should be 30 and its 70. From what it have read with CIPD your CFS is elevated but your WBC should be low. Does anyone if the is true. High WBC shows inflammation I’m thinking this is the cause of my back pain. My ER visites was for lower back pain and extremweakness like I experanced with RPF. After my spinal tape I was give 5 doses of IVIG. I am still in disbelief on what is happening. I am unclear about the CFS and High WBC.
Don’t remain in disbelief long because the sooner you get on regular IVIG the better your chances of reclaiming or limiting the bad stuff cidp does. Get or stay with a good neurologist and get on plan to a regularly times treatment. I’d start seeking out a good pain management doctor right away too! Don’t rely on your neurologist to treat your pain!!! They won’t do it and neither will your general practitioner! Only painmanagement Doctor will treat pain.
You can get over cidp. It might not be to your timeframe, but you can recover and get better. Don’t be too despondent or too low right now because this disease is a marathon, not a sprint, but you can have a life post cidp! May God bless you!
I could not agree more with everything you said may God Bless you and all who dealing with CIDP. My love and prayers to each and everyone of you. In Gods speed. JUTTY
I am happy to hear you have had 20+ years fighting RPF. I agree with the others in that you need to be aggressive and get treatments started as soon as possible for CIDP. We had a neurologist, hematologist, and our family doctor on our team.
My husband was diagnosed with CIDP a few years ago. His neurologist aggressively treated him with steroids and IVIG treatments. He was diagnosed from a spinal tap and other considerations. He did not achieve any relief of symptoms from his treatments and had annual nerve conduction tests. He never got any better or worse, it seemed to stall the symptoms.
In Nov 2017 he was diagnosed with retroperitoneal fibrosis which has resulted in renal failure. He has dual nephrostomy tubes and we are trying to stave off dialysis. I have begun to wonder if he actually had CIDP at all or if the nerve damage was due to RPF. Our rheumatologist didn’t know of any correlation between the two, but I am no longer sure.
Take care, a positive attitude and support are so valuable!