Reply To: CIDP and Parkinsons Disease. Any connection?

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.