CIDP and Parkinsons Disease. Any connection?

    • February 9, 2024 at 6:05 pm

      Hi. I have had CIDP since 2016. Was lucky to be diagnosed early and have had a good reaction to treatment with mainly my left foot and lower legs experiencing tne verve  tingling. Recently it moved to my left foot and my balance sarted to be affected. Went from IVIG every 4 weeks back to every 3 weeks without much change. Other symptoms have presented, includung a n odd gait to my walking, probably due to the balance issues plus overactive saliva production. Have had a slight tremor in my ring finger on left side.. I do not see my neuro until May and have read that getting started on meds for Parkinsons is crtuical for holding off disease progression. Wondering if I should press for a sooner appointment? Anyone have any experience with both CIDP and Parkinsons? any input would be appreciated, Jim ????

    • February 10, 2024 at 1:52 am

      Good day to you, My name is Patrick, from South Africa. I was diagnosed in July 2020.

      I had an IV treatment of Solumedrol (I don’t know if that is the same as your IVIG), once daily x5, then one fortnightly x8.

      Initially I used to get a sharp jab, in my feet, like a knitting needle poking them. My Neurologist placed me onto Epileptin that helped for a while.

      I had a relapse now November 2023, where I had the same treatment.

      I experienced spasms/jerks in legs usually about 30minutes after going to bed. This eventually built up that nearly my entire body jerked after getting up and ended up with about 3 or 4 hours sleep every 3 days if I was lucky.

      My Neurologist tried me on Oxpola as well as Nurika without much success. I have also been on Urbanol as I had extreme vertigo anxieties when why CIDP first started.

      After experimenting a bit, I found that one Epileptin capsule and one Urbanol tablet taken every third day, just about eliminated my spasms as well as the tingling in my hand and feet, I am also able to get a full nights sleep albeit more than I was hoping for.

      Not knowing the half-life and effective concentrations of the medications, I have not experimented further but I get the feeling that the Urbanol might be effective for slightly longer.

      It is however a bit of a double edge sword, as it seems to make you a bit lethargic as well as foggy minded.

      I hope that this might be of assistance to you or someone else.

    • February 10, 2024 at 2:20 am

      Correction Solumedrol is not the IviG, it is a steroid like Predisone given intravenously.