Has anyone experienced an untreated reflare of CIDP? I had what they believe may have been a mild case of Guillain Barre back in June 2014. Then, I had a reflare of symptoms after a sinus infection in Feb 2015 which has been quite tough. I am seeing an expert in the field in July to see if this may be CIDP.
This is just a fact based opinion, so ignore it if you want.
I do a lot of reading as I feel forums are invaluable for learning the true effects of this disease.
So many people in this community of the rare that were told they have GBS eventually end up “getting” CIDP later.
I do believe that GBS is a CIDP attack that the body is able to fight off, and when the body can no longer fight, the symptom progression begins.
People can’t say acute attacks are limited only to “GBS” because they happen with CIDP. I know this because I live it as my partner’s caretaker.
Neurologists are taught to diagnose GBS until symptoms last longer than eight weeks, then at that point, the diagnosis changes to CIDP.
There is no difference between GBS and CIDP other than onset time length, which makes no sense.
With that being said, I do hope that you find something to keep you in a remission from attacks. And quickly. Don’t let any doctors act nonchalant about treating you. Keep it at bay where it is now. You don’t want to become worse, and it really is a matter of life and death. Uncontrolled auto immune problems ravage through each system in your body until they are put into a remission, or they run their course and it’s not a good road.
I wish I knew then what I know now so I could have prevented the massive damage to my partner’s body. I would have gotten her in to be treated with HSCT much sooner. However, soon she will be put into a permanent remission, for which I am thankful.
Flare-ups are one characteristic of CIDP. “Treatment” depends on the severity of the flare and how disabling it becomes. Feeling like you are walking on foam rubber is another. So is thinning of the leg muscles. The pains can be compared to all the harmonies in music, where each sound is a different type of pain, running the gaunlet from burning, stabbing, sharp, pressure, unbearable electric shocks, and toothache which can occur together or serparately, thus the music simile - albeit horrible music. Weakness of muscles and disturbed balance make one a fall risk. Let us all know the results of your July visit. We wish you well and hope you find what you’re looking for.
My first symptoms occurred in October. I was diagnosed with GBS, treated with IVIG, recovered very well, and thought I was over it.
Then, I had a serious relapse in February of the following year. So, it was about 5 months between first onset and relapse. My neurologist did additional testing, and changed my diagnosis to CIDP. After that, relapses (or reflares, or whatever you want to call them) seemed to come much more frequently, and more severely. I think at the first onset the CIDP was not fully developed, but then by the second time it really hit its peak.
After I was treated the first time, I did not expect a relapse. So, when I did start to get weaker again, I was in denial for a while, and did not get treatment as soon as I probably should have. I think if I had gone back to my neurologist sooner, I might not be so weak today. But, who knows?