Thanks for the welcome, I would like to introduce myself and give a you a quick version of my CIDP story. My journey with cidp began in 1999 with a two week bout with a viral infecton that was thought to be the flu, then rocky mountain Spotted fever, then, we are not sure,but think it to be a viral infection of some sort. Had fever, would feel like I had electric shocks hitting me, and overall miserableness. After the virus had run its course I noticed some numbness and tingling in my feet. No dx, just continued on with daily life.
In 2003 fatigue and weakness set in. Went to Emory in Atlanta and eventually dx'ed with mild cidp. Did not take any treatment course. Under a lot of stress and change at work, as the stress reduced, symtoms declined as well. Numbness in feet remained a constant.
In 2007 ,fatigue, extreme weakness in arms and legs, muscle wasting in feet, and mental fog went to a different level for me. Started seeing Neuro in town, after much testing, red tape, and more testing, my insurance approved IVig treatment. Did a 5 day loading dose,without any significant improvement.Decided to get a 2nd opinion from my original Neuro at Emory. More testing, eliminated Charcot-Mare-Toothe, and other exotic forms of neuropathy.
Emory Doc said I was a bit of an anomoly. I had severly slowed conduction with axonal damage, However ,my emg was unremarkable, spinal fluid normal, and reflexes unimpaired. Did not think IVig would help. He told me that the could "see" the cidp, but felt that it would not progress, and likened my future to someone who has arthritis. I would know its there, It would be an annoyance and uncomfortable, but it should not become life altering.This dx was 2 months after my IVig treatment.
So, at that point I am resigned that this is my lot in life. Deal with it.He did not rx any additional treatment.
However, within an additional 2 to 3 months from my visit, my strength returned, fatigue, weakness, and fog diminished, and I felt good. I mean I felt "really "good, and have for 7 years. Still had the foot numbness though.
Fast forward seven years, and I am experiencing increased numbness in my feet, fatigue in my lower and upper leg muscles, and generally feeling tired to the point on my days off from work I just want to sit in my recliner and nap. I can not seem to rest enough to feel refreshed.
So, I have an appointment with my local Neuro on Tuesday. Not sure what to expect, other than more testing, I am preparing mentally for the waiting game, as my experience has been that the wheels of diagnosis turn very slowly!
Thanks for listening, And I look forward to learning about your journey as well.
Charles