MFS 11 years ago, chronic fever-like discomfort, any relationship?

Hello Nolan – I am glad you found us here. I have never had a chronic fever issue nor have I read anything about that here. Perhaps someone else will jump in here with better information for you. Fatigue is a huge problem with me and most of the posters here. My Dr. has been giving me b-12 injections as needed and that helps with the fatigue. Please feel free to join in on the main forum or the adult GBS forum to get more input from others. Everyone is really helpful.
Be Well –

Hi, Nolan,

Since my M/F experience in 2000, I’ve encountered similar symptoms. It’s as though my entire body’s energy quotient was taken down a serious notch, and has been with me since to this day. After a year or so, I didn’t think much about it, but nevertheless it persisted. I take Vitamin B as Alma mentioned, and it seems to help. I simply tire easily, no matter what the activity. The feeling translated much like how you describe … almost that flu-like weakness that comes over your entire body when an infection comes on. I now know my limitations, and know that it’s a post-GBS thing, as my doctor describes it. You’re not dreamin’, Nolan, it’s a bona fide residual of M/F, in my humble opinion.

Prayers your way,
Norm

Hi everyone, Nolan good luck!

I have been wondering the same questions. Currently my doctors are trying to figure out what is “wrong” with me. When asked to explain my symptoms it appears to sound crazy, temperature staying between 96.6 and 97.3, fatigue (especially be the end of the day), sleeping an average of 8-12 hours a night, being off balance and stumbling especially when first waking up or when very tired, vision going blurry throughout the day, and the feeling of jolts or like nerves are crossing and zapping. They are currently checking my iron levels and thyroid, however they are not sure what to do after that except send me to a neurologist. It has been 13 years since i have had MF, and I am just getting ready to turn 29 years old…any help, thoughts, or support?

I wish I had a really positive answer for you, but what you have just described is me – on my good days.
My only recourse is rest and more rest. I plan my activities (and housework) in short periods of activity – rest – short period of activity – rest – etc etc…
In this way I can accomplish almost everything I want to do – just not all at once.
The b-12 injections are helpful when I slow down to nothing. I am a little older then you (O.K. – I do not even have any children as young as you) so that probably makes a difference.
Have you experienced these problems ever since your first onset of GBS/MFv or is this something new? There is a lot of talk here of post-GBS residuales here, om the main forum and adult GBS forums.

Kevie has all of these issues as well. His B-12 blood work is good. Vit D is good for now too.???? There is some sort of sinus infection, we are on a 3 month course of anti biotics, we will see. I am sure it is using the ivig quicker. I believe the whole cidp issue also has something to do with temperature regulation. Kev is getting so sick of feeling sick and weak from Oct. to April. I am at a loss.

When you originally posted here I was still unable to use a computer thanks to my GBS/CIDP/MFS. I too still have residuals from my attack in 2008.

Kaiser doesn’t have a good reputation for treating our disease. I heard that here on this forum and live at the last CIDP Foundation event in Los Angeles where Dr Richard Lewis was guest speaker. A Kaiser patient asked Dr Lewis about taking in Kaiser patients and he told the person to contact him to see if they could work out a special payment arrangement. Dr Lewis is at Cedars Sinai in Los Angeles. There are a number of other centers of excellence around the world and maybe one could work for you. Please see the list here: http://www.gbs-cidp.org/get-support/centers-of-excellence It might be worth some extra bucks to get a second opinion.

The only Kaiser facility that I have heard might have good GBS and other neuromuscular coverage is the one in Downey, CA. Where do you live?