C.I.D.P. and Multiple Sclerosis

July 3, 2010 at 7:42 pm


I knew I had something wrong with me for decades. The weirdest sensations and tremors and paresthesias/uncontrolled movements were hitting me and I looked up every word every doctor told me and I kept coming up with MS. I had been previously diagnosed with Fibromyalgia/Chronic Fatigue Syndrome/Chronic Pain Syndrome. about 1990 give or take a few. I believed with all my heart it was MS because I had trouble with seeing, walking, balance, paresthesias all over my body, and also the really hard increasing burning pain mostly in my legs but really all over at times with the stabbing and stinging and the feelings that bugs were all over me. My joints were cycling with weakness and pain all over my body. I took NSAIDS all the way up to Naproxen and got a nice little ulcer before they let me take Tramadol. Then they had to give me 10 Darvocet’s, a month for when it was really bad. (I mean that is all they would give me) untill finally I demanded that they just give me more Darvocet, and my patience had really wore out so they finally did. It does not stop my pain, but it does take the edge off some of it. I worked 27 years with the last 15 in major pain and at times I couldn’t even talk right, reason right, or stand straight up.

My Cognitive problems went through the roof and I ended up in the hospital from pain in my side. Nobody would diagnose me but I had 4 possibles. They would admit I had had Optic Neuritis and that my vision loss was because of it. I can see blurry everything but cannot read at all out of my left eye so I am legally blind in that eye and it is getting worse. It appears things move that are stationary so I guess it is a different kind of Nystagmus from the jerking one I have. I tell doctors and they just kept saying uh huh, and then blew me off or told me they were sorry for my slight peripheral neuropathy but they did not think much wrong with me. The last 20 years have been so hard. But finally this doctor says it is C.I.D.P. he is sure of it and also maybe MS. I gave him my cd of my MRI’s from 2006 and because he wanted to treat the C.I.D.P. with IVIG and of course the insurace company gave him a hard time so he had lower spine MRI’s and he did the only EMG test on me that hurt. They others did not hurt like that. I was saying OW! a lot in shock that it hurt. While he was stabbing and shocking me I asked him about my MRI’s and had he seen the Dawson’s Fingers one doctor had changed a record to say I did have. He said yes. I asked him if he saw the lesions, demyelination and gliosis on my brain also because these were brain MRI’s we were talking about. He said yes. So I asked him what he thought. He told me I had MS too. He is a man of few words but he gave me the most truth and the most hope I have had since I don’t know when,

I am on IVIG Gamunex 40mg 1 day about every two weeks. I had never heard too much about this treatment. He said hopefully it would make me feel much better. I have only had two so far, and nothing has improved that I can be sure of. I am still hopeful.

Are many on this forum that have both MS and C.I.P.D.?