(Google Is My Friend) “However, the differential diagnosis between CMT and CIDP is sometimes difficult; sometimes CIDP can associate with CMT1A.” and other such remarks, including some from my own neurologist justify you getting a full evaluation from a neurology clinic/hospital. In preparation google “cidp cmt” and read, looking for SYMPTOMS you do, as well as all those you don’t have. Follow links in the text, Here is a good start: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3820196/ Most of the worthwhile ones are very technical, written by scientists for other researchers and doctors, but contain valuable clues for you and your neuro-muscular specialist.
I hate to say what I know but western medicine is going to make us worse. There is such corruption in Big Pharma that feeds into doctors evidence based medicine that we are lambs being led to slaughter. Wish I had the Holy Grail.
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I had severe CIDP 4 years ago and my great neurologist first tried ICIG and it did nothing for me. Then he tried solumedrol and it did wonders … I am basically fine now (some peripheral neuropathy) . Everyone is different, but that is what patched me up.
Charlie in Western Montana
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So many of the items you mention seem to fit my life style also. I have found that light food with protein and in small portions provide me with less fatigue as most of the time after meals and especially a holiday or large heavy meal I feel like a balloon with all the air gone. Fatigue is me issue also I take naps every day for 1-2 hours and sleep 10 hours a night and still feel worn out most of the time. I am addicted to unsweetened tea and carry around a slurpie mug most of the time. Seems like we get the best information from listening to our members.
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Thank you very very much!
Yes it is nice to feel a little bit of control with this illness. Even if it is just in my head:). I have not had any alcohol since 2017. Does anybody regularly still have a glass of wine socially, here or there?
I too wondered the same thing, so I got a second opinion after 4 years of IVIG’S that did not work. The second told me I did not have CIDP and he thought I had POEMS syndrome.
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