Reply To: CIDP big relapse vs mini relapse?

November 7, 2017 at 7:58 am

FELLOWCIDPGUY…. Hello Jeff (Andrea Marie and Chirpy). Before I begin I don’t think that you need to apologize for complaining. I hope that is what the Forum is about. It sounds like you are relatively new to CIDP and you should protect yourself in any way you can from further progression and try to be comfortable where you are. I have only recently been involved in the CIDP Forum (Oct.) and continue to learn so much thanks to your recent post and several others as well. It is similar to another Support Group which has helped me tremendously to overcome another challenge for over 20 Years.

I am not that far along to help with my experience with IVig as has been indicated in my earlier posts (although 4 plus years on Prednisone). In addition to my learning as much as I can, I am hoping that by telling my experience as I go through IVig (starting 10/23/17) to providing updates. It might help someone else that might experience the same thing but not intended to mean that applies to everyone. It can be intimidating not knowing what to expect. I have been using a Visiting Nurse, which was recommended in the Posts, and that part of the process has been a positive experience.

I have a great Neurologist who is overworked but is willing to do research and think out of box. He is willing to listen to what I bring to the table. I have fired two because I was not satisfied with their generic approach for treatment and lack of providing information. I don’t know if I like the answer “there are not different types of illnesses”. If your Neuro is referring to within CIDP, I would beg to differ. Just my opinion.

Tumeric is something that I would also be interested in learning about along with other supplemental medications. As to Cramps/Spasms, I have been involved in athletic activities most of my life, and PT seems to be something that has to be approached with care. Unless they are knowledgeable about how to approach CIDP patients they can cause unnecessary discomfort. Stretching is good, no doubt. When I have spasms, usually during the night, I apply large heating pads to the backs of my legs (low to med setting). It usually works. I recently started sleeping on a heated mattress pad which has held spasms at bay. Of course overdoing it will bring it on for me.

As an aside, I am so sorry to hear about your home being destroyed. Oh No HoustonI I have a home in FL on the East Coast and managed to escape any significant damages this past season. It’s like “who needs this?” when you are already battling CIDP ! You sound resilient. I believe that a lot of things can be replaced but the items with sentimental value are the real treasures. Hopefully you have been able to recover many of those.


Phew. OK I’m done.
Acceptance76 Bill F GA/FL