I am 47 years old with cidp too–but have not had any signs of menopause yet–still very regular menstrual cycle. Many of my high school friends have said they have stopped having regular cycles and are in peri-menopause. So its hard to say if cidp played a role in yours or if you may have started anyway?? Do you have older sisters or mother—you could see when they started, that might give you an idea for your self…..best of luck with it—just what you needed on top of a new cidp diagnosis–right!!! But i guess it’s inevitable–part of being a woman. Lori

i received the 5 day loading dose of 2gm per kg in a 2 day period for a year and a half with no side effects. first every 12 then every 6 weeks. I was told that as long as you were fairly young, in good health (other than the cidp) and had healthy kidneys that this would be fine. I did pre med with tylenol and benedryl and drank tons of water. For me I chose this due to convenience—missed less work, etc. Lori

Did a search and the only member who i found that posted that they actually WENT to Texas/Houston was Pat G—may try pming her to see if she is on and can give you any first hand info on the place. there were a few other posts noting that it was one of the centers for excellency but not that they had personally been there. That must be a driveable place to go from where you are—right??? probably a looong drive though. Good Luck Lori

is mg the disease that relates to the thymus gland? its interesting that there could be a link to mg-thymus-cidp??? I did a lot of research on the thymus before i went out to mayo trying to connect info that it may be the cause of my abnormal antibody. As it turned out the particular antibody that I am producing is not made by the thymus (according to Dr Dyck)—but that doesnt rule out others. Just an interesting concept i thought i would throw out there—i guess in some cases removing the thymus fixes the mg. Lori

glad to hear from you Linda 🙂 I was wondering how you were doing—sounds like things are going good—best wishes Lori

I have had no side effects from IVIG, I drink lots of water—and even more the days before and during the infusion. I find that if they put the iv in my arm and not my hand it is a lot more comfortable, the arm stays warmer. I start low then increase the infusion rate until it gets to 240, no problems with this. I am pre-medicated with tylenol and 25 mg benedryl. Books and laptop are good to bring. I have always driven to and from infusion with no problems. Any more questions–feel free to ask. Hope all goes well for you–Lori

yes—most likely they will test you to see if your autonomic system is affected. they tested me for this during my first diagnosis at Lahey then again during my second opinion at Mayo. If you feel the cidp has affected your autonomic system then you should ask to be tested to be sure. Mine was not affected—-so I’m not sure that it will change the treatment at all—but it would be good for you to know if your blood pressure, etc is affected. Im sure if it was there are extra precautions you would want to follow. lori

yes the fatigue that comes with this is horrible—–I think its to do with the existing nerves attempting to do the work for the damaged nerves, they are overworked therefore causing exhaustion. Then of coarse the body constantly fighting the inflammation if the cidp is still active.
one day at a time—-be thankful for the things you were able to do each day—-do something you enjoy each day—–and most of the other not so fun things will still be there tomorrow!!! but–yes it is soooo discouraging, things that used to be so easy and natural now being so tiresome and difficult. Lori