This "discussion" offically proves I'm just too chatty, LOL. I was going to post this on my status but that limits me to 144 characters. That would have required 5 status reports to say all this! So heres a discussion of my status. One of the reasons I don't twitter. Ha.
Saw my nerologist yesterday. I asked him about his experience with CIDP and the told me he has been in private practice for 6 years. He confirms diagnosis on approximatley one new CIDP patient a month. He has around 75 patients with CIDP. Interesting. And so sad to hear that there is that much of it. He said he felt it was just being diagnosed properly in the last few years.
Otherwise, still waiting on insurance to approve my IVIG. I called them to complain and hopefully move them along to approve or disapprove it. My nero put me on 40 mg per day of presidone (spelling -5) for the next six weeks. At 30 mg for one week I felt very good. At 40 mg I'm hoping to sprout wings and FLY!
So what's going on with you guys?
nothing wrong with Chatty! :)
Starting to relapse :( Going to Neuro on Monday to see what my options are. Looks like after 2 relapses it is CIDP instead of GBS.
So sorry to hear that rduchess. Who knows whats in the cards for us day to day. For me, I've had my share of incorrect diagnosis'. Just so happy that the tests nailed down an answer. I hope that you will feel happy with a definite diagnosis. It's miserable to go from thing to thing and not know. I'm thinking of you and hoping better health and happiness comes your way soon! Hugs!
Thank you for your support. I really appreciate it. I'm trying to stay upbeat and chipper but I was really hoping this was acute, not chronic. I do have a good doc. He takes really good care of me! I'm so blessed!
I am on 200 mg of prednisone a week. 50 on Mon. 50 on Wed. and 100 on Fri. Even with 150 channels on TV all that is on is informercial. What a hoot. I make plans to go to Wal-Mart with friends and family to go after midnight. Gotta fine the humor.
Thus it seems that CIDP is not that rare anymore. It does not bode well for sufferers but hopefully will speed up the medical aids to acknowledge it, and pay out. Bless all of you this morning and be strong.
I am off to see the medical aid face to face today as they rejected my IVIG treatment.