AnonymousSeptember 21, 2008 at 6:29 pm
Hey Joan! Has your husband ever been tested for Celiac Sprue? I know that disease can cause problems with CIDP and some people can get very sick. Do they know which type of nerve damage he has! Like mine has been called Chronic Motor/Sensory Inflammatory Axonal Demylenating Neuropathy. So I have an Axonal in mine which gives the doctor an idea as what he wants to look for! But then sometimes they still can’t get answers.
Also curious as to any symptoms he may have had or has been having with all this going on with him. Fever’s, fatigue, upset stomachs, headaches any rashes at any given time? Tremor’s, muscle twitching, cramps! Does he ever complain about eye problems?
I ordered a book of Rare Diseases and while I am in the hospital having my stuff taken care of I plan on doing some reading. It may not help him, but if I come across something that might not have been checked out anything is worth a try.
It would be wonderful if it was something so simple with a 100 percent cure rate on your husband. I know how frustrating this can be for you. Even for him too!
I remember me going for 5 years of not being diagnosed with Lupus and them telling me I had an auto-immune disorder but had no idea of what it was. 5 long years of not knowing and getting sicker and sicker. I never even heard of Lupus until one doctor told me I was showing classical symptoms of the disease.
Was your husband ever in the military serving Vietnam? Reason asking is Agent Orange. Many got exposed to that chemical and many got severely ill with later side effects when they got older.
I really wish and pray that something comes up for your husband giving him another chance with life. Neither of you or any of us should have to go through this kind of frustration. All the medical technology we have in this world with still no answers for so many.
I think I would even ask his doctors about a Stem Cell Transplant. If he has no other options of other treatments then that might have to be what they would consider for him. Not cheap having that done, but have actually met a few folks that had that procedure and they are now well and doing great.
Will keep you in my prayers! Hugs
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