I have realized that the reason I have been sleeping 20 hours a day was because of my thyroid!!! I researched my medical records going years back including bloodwork. I noticed the change in my T3, T4 ans TSH. I took my basal temp and it came out at 94 degrees. I called my doctor, he said not to look for things that are wrong with me because if I look, I will find something wrong! I decided not to agrue. I called a friend of mine who is a physician, I told her my findings and my thoughts on treating my thyroid, she was hesitant, but said we could give it a shot. She called in a prescription for me as a favor. I started taking 25mcg’s (very low dose) of Cytomel and I feel amazing. I am awake, alert, I have enery, I feel happy. I still have the pain from the CIDP, but who cares!!!!! I’m finally living!!!!!!! I am playing with my kids and have even planned a weekend away with my husband! It feels so good to not be a houseplant!!!:p

I know it is not completely “official” yet, but I have to give a cheer that there has been no increasing damage in 4 years. That is really good. I do have a question–did they test more than one nerve? Because stability in one nerve with progressive symptoms probably would not mean too much, but stability in a few nerves is more likely really to be stability.
Pain can progress despite no further damage, just based on the existing damage plus/minus the fact that none of us are getting younger.
I understand perfectly disappointment that there is nothing to do to help the underlying process, but would like to encourage you still that there is a lot to be done and that you are working on regarding pain management which is so extremely important.
I just wanted to say that I think it is good to have stable disease and be able to focus on managing the symptoms from past damage, than to have fulminant progressive disease even though, like a lot of us, we wish most of all for a cure for it all. Sometimes the second best is not too bad, though. I am not discounting your right to feel ambivalent about these results. I have spent a lot of time recently upset with the fact that I am getting no treatment and not getting better. I know I should look at it as I do not need treatment now and that I am not getting worse, but still I wish life were different. I really wish I would wake up and this was all a nightmare, but it seems that is not going to happen, so I am trying to be content with what is. Anyway, I celebrate for you that you have the fortune to be stable for four years and hope that this continues and that everyone turns right now to making life better by getting a better pain regiment for you.
WithHope for a cure of these diseases

sounds like good plan Here’s hioing all goes well for you.

Emma

i’m so glad your doing so well with your treatment. i have autoimmune hepatits from my gbs. i just had another liver biopsy along with the removal of my gallbladder, last week. i take cell cept. i’ve had chemo. for the gbs. if my autoimmune hep doessn’t get under control, they want to start me on some NASTY drugs, i really don’t want to take. i’m glad you’re responding so well. best of luck.
love,
deb

Hello DeeDee,
Some of us do go into a remission or end of progression. The way I knew that I no longer needed IVIG’s or treatments other then physical therapy, was that I lost my “what if” fear, what if I really need IVIG’s, what if that’s what kept me stable. What you are looking for is stability, do you feel the same all the time or do you still have good days/bad days.
I like the attitude your doctor has. I have read so many posts where the doctors were highly critical of advice from people on this forum.