I told my daughter once she has some reflex… I also looked into getting our car adapted for her. it was not that much money, there are companies out there. but luckily the reflexes were returning then so we were able to let her start driving. Check with you local driving school, that is who gave me the name.. Ibelieve here in MA it is called adaptive driving… good luck… wishing you both the best.

Good Luck Linda. look forward to reading your updates. considering same for my daughter who has recently relapsed so any advise is helpful.

Tohear that you are going back to work, I remember that phone call back on the eve of the 2008 elections, how far you have come. When I first got sick it was my job that I was most concerned about, the students that I was working with at that time. Little did i know what CIDP really had in store for me! But that was almost 9 years ago now, & it is so good to hear someone fought this battle & won. You are truly an inspiration for so many here, & so darn smart as well!

Good luck on a diagnosis. I sat in the hospital and googled everything that feel out of the doctor’s mouth and there were lots of docs! I also have found prior to this experience that Web MD is the tool of the devil – I can have the sniffles and by the time I am done reading Web MD, I most probably have lymphoma. So be aware!

Alice, I hope that your cytoxan infusions go as well as mine did. I know I only had them once a month, but really suffered no ill effects, just the turkey legs, LOL! Good luck for the next 4 days!!!

Thinkin about ya. Good Luck Next week.

PS when you fly sit in fwd cabin. air moves aft during flight toward the
outflow press. valves. keep the vent open during flt pointed just ahead
of your face and wear a mask. Don’t get on til last. all these will up your odds.

Alice, I will be following your posts with great interest, and hope you knock CIDP into a long-lasting remission.

This Northwestern protocol, or the Revimmune protocol (which uses ultra high-dose cytoxan w/o stem cell transplant) are two options I believe hold much promise for severe cases, based on research I have read.

Very exciting!

Joan,
I think you have your plate full.. You don’t want to be a nag.. And you don’t want to p@ss Bill off… Sounds like my wife and ornery me when I was sick… Your husband has a lot of decisions to make, and for better or worse, some decisions are gonna be made for him… Healthy lifestyle choices offer him the best chance to recover and live…:) We know what bad choices can do to us as well…:( . Mayo is the best in the world for transplants… , 🙂 and I hope the best for you guys.. I really hope that if your husband wants to be a fighter, and stay on this planet with a chance for quality life, he needs to make those lifestyle changes now! Smoking is the toughest habit there is, and the damage is continual…. But we all know that….I’ve had a family member that had a liver transplant (at the Mayo) twenty years ago and doing great… so I know all too well, what is expected from you guys, as well as how great they are…. I hope it all works out…. In many ways we still control our own destiny…. Dean:)

Good Luck Linda. I have been thinking of you often. Get well soon & enjoy the pampering while it lasts. Let us know who things went.
Great Big Cyber Hugs!!!!:)
God Bless!

Hope everything went well today. thinking of you

Good Luck today Linda! Praying the doc has some answers for you. Let us know what he says.

I wish you the best in your battle, but I am glad to hear that you will not be going back to work there. When I came down with CIDP in March of 2002 (a very sudden & severe case), I was teaching full-time in an Adult Ed classroom. Initially, I was told I was not eligible for short-term disabilty because I had elected to drop down to 3 days a week the previous summer (to save them money, as summers were our slow time), & my boss had forgot to change my status back to full-time the previous September.

I was too sick to fight, & my boss said something like, I guess we all learn from our mistakes the hard way. But fortunately the HR person went to bat for me & I did receive 6 months of S&A, which enabled my husband to take 3 months of FMLA to take care of me, as well as finding better hospitals & neuros to care for me. I did have to resign my job after 7 months, my husband holding the pen in my hand to help me make an X.

Almost 5 years later I realize that I still cannot work at all. I need about 9-10 hours of sleep a night, plus a two hour nap each day. My voice is still weak, my handwriting is fine, but only lasts an hour or so, & I walk with braces & a cane. People don’t understand why I don’t at least try to sub, that’s just it, they don’t see the fatigue. I am just lucky that I could get SSD & my husband just retired, so money is not an issue for us. Losing one’s job is like losing who we are, it is still one of the hardest things I had to deal with.

🙂 I hope your diagnosis in the hospital goes ok. I have tenderness in my hips but no lumps.