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Aug 3, 2017 · MS and Myasthenia Gravis and CIDP and POEMS not related? in Brain & Nervous System

I have CIDP/POEMS and my daughter has MS/Myasthenia Gravis and we are told that they are not related with each other. Does anybody else have a family history of these diseases?

Jul 12, 2017 · Anyone here dealing with peripheral neuropathy? in Neuropathy

Hi bburleson1, it sounds like you are telling my story. I’ve been dealing with this for 3 years now. First it was MGUS with PN. I was started on plasma exchange for 6 months with a break to remove my tunnel dialysis catheter. After 3 months I was already headed down hill. I was given heavy does of steroids to see if that helped. Nice try but nothing. I tried 3 rounds of Ritoxin that didn’t help so I was back on PE while they tried to figure out what my diagnosis was. One Dr said it was CIDP and one Dr said it was POEMS. More test, bone marrow biopsy, fat aspirate, blood test, EMG, EEG, seral nerve biopsy all that were going to determine what I had. And all the test came back that I had indicators for CIDP and POEMS. I started on cytonixin and after 2 rounds of that I went walking to being unable to use my legs or arms. I called my Mayo doctor who sent me to Mayo-Methodist hospital where I was started with 3 days of PE followed by 5 days of IVIG. After 8 days in the hospital and being labeled a quadriplegic I start to get some feeling in my hands so I was sent to Mayo- St Mary hospital for rehabilitation. After 10 days of physical and occupation therapy I walked out of there using a walker and AFO’s. It’s been a year since then and now I’m doing 45grams of IVIG every 10 days and I’m back to 90% normal. I don’t have any side effects from the IVIG so I’ll continue until????
Bruce

Apr 11, 2017 · Anyone here dealing with peripheral neuropathy? in Neuropathy

I also have CIDP. It’s been 3 years of ups and downs. I’ve been on Plasma Exchange until that stopped working. In July 2016 I ended up at Mayo/ St Mary as a quadriplegic and started a series of IVIG treatments. After 18 days there and rehab I walked out using a walker. I get 30g of IVIG weekly, 1200mg gabapenten 3 times a day, Cymbalta and Azathioprine. Today I can do most normal activities but I still have PN in my feet. I do take my time walking and try to watch where I’m going. My neurologist says the numb feet are a gift from CIDP.