Guess what guys, I have POEMS blood plasma disorder that causes neuropathy in my hands and feet..I’ve found that Vicks Vapor Rub has a lot of uses..
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Hi all. I don’t know what I have from day to day. First diagnosed with GBS, sought out another neurologist and second diagnosis was CIDP. After test and seeking a third opinion, was diagnosed with POEMS. Has anyone been familiar with POEMS. I had a tumor removed in January 2017 then followed up with radiation treatments. I’ve been on Prednisone which helped, I didn’t have all the side effects of Prednisone, weight gain. puffy face, now I’m weaning off the Prednisone, still having IVIG treatments for the CIDP diagnosis, and cautiously spacing them further apart. i suspect if I don’t have problems, this will be discontinued sometime in the coming months. I was hard to diagnose properly and just pray a lot, because I am a lot better than I was in October of 2016. I was on a walker now I walk freely with the help of AFOs for drop foot in both feet. I drive now and take water exericse 4 days a week. I so interested in having a support group to talk to with this neuropathy. My hands were affected and now are better, not normal, legs either, but so much better than in the past, so I am grateful for the strides I make and can now do housework, play in my flowerbeds, not falling anyone..just enjoying what accomplishments I have made. Please respond with your experiences, what helps, Thanks for sharing with me.
Since I posted about CIDP I have been rediagnosed with POEMS syndrome even rarer than CIDP. It was discovered I had a tumor on my pubic bone and I have had radiation treatments . POEMS is in the Myeloma family. I am still recieving IVIG, taking Prednisone and Cellcept for my condition. I don’t know a lot about POEMS, but the tumor was considered a cancer plasma cytoma..and Myeloma is a blood type cancer.
I am attending as a patient and my daughter is going as an advocate, another set of ears, to learn what we can about stem cell therapy. It will be a long day but hopefully the benefits will outweigh the length of the day. I get fatigued easily with my condition thus far. Hoping for better days on down the road and wishing to share whatever type of hopeful hints that I learn. Thanks so much..Beverly
I have CIDP and have been receiving infusions of Previgen since July. I have my 5th infusion on Friday Sep 9th. I haven’t had any results as of yet, however the visit with neurologist says my strength in my arms test better than in June. Evidently, the recovery is very slow.
If you want to send me a private message. I’m very interested in sharing and learning from other CID)P patients or caregivers. I’m going to a GBS/CIDP symposium the 22nd of September in San Antonio, TX they will be talking a lot about stem cell therapy for CIDP.
I live outside Dallas Texas and have had 4 IVIG treatments, so far no problem with insurance. I haven’t had a noticeable difference in my symptoms. How long did it take for the IVIG to make a difference. I have numbness in hands and feet and legs up to my knees. Severe balance problems. I have to use a walker. I’m looking for hope and encouragement.