AnonymousSeptember 3, 2006 at 12:55 am
I am new to the forum. I was diagnosed with CIDP August 25th. I spent 6 days in the hospital and was administered 5 IVIG treatments. By the third day my hands and forearms began to feel strong again. It is working. However, I now have blood clots in both of my forearms from the injection sites.
[B]Is there anyone who has experienced few or no relapses?
Is there anyone who has gained the majority of their strength back and maintained it?[/B]
I am a 30 years old, athletic and strong prior to this bump. Still 30. It took about 2 1/2 months to reach the point that it was hard to type and all the other standard stuff. Never lost my ability to walk.
Any help is much appreciated.
AnonymousSeptember 4, 2006 at 3:51 am
Hi, Damon, and welcome.
As you will no doubt see from Dick’s thread in which he’s asking people how they’re affected, no two of us are alike. And for some of us, CIDP can change course.
I went for several years with only autonomic problems, and then for several more only relapsing when I managed to take the ‘flu–about once a year–which IVIg stopped, leaving me pretty well normal in terms of mobility. The past eighteen months the disorder has changed so that now I’m relapsing every six weeks or so but going into automatic remissions, although each relapse leaves me a little worse than I was before. And IVIg no longer helps.
There’s an old Chinese curse: may you live in interesting times. With CIDP, indeed we do!
AnonymousSeptember 4, 2006 at 5:59 pm
I have not had a remission (struck July 5, 2005 and diagnosed in Sept., 2005) though I still have some residual effects… I could not climb stairs in July which would have been a real problem because the addtion to our house is on two different levels… By the first of November I was climbing stairs and by Christmas I was able to sleep on a regular (not air) mattress… Residual effects are fatigue (the worst of all), inability to stand in one place (walking is more preferable to just standing), weakness and pin & needles in arms and hands if I over use them, and a lack of balance (I use a cane)…
Hope this helps…
AnonymousSeptember 4, 2006 at 6:42 pm
My (almost) 5 year old daughter Emily was dx’d with CIDP in April 2006 (dx’d with GBS in late Dec 05). Her CIDP is relapsing every 6 weeks except her right eye becomes paralyzed again if she goes 1 week without treatment. She has to have 2 IVIG treatments a week to maintain her eye. We’ve figured out that if we “up” her treatments every 4 weeks to IVIG 3 times a week for 2 weeks we can ward off the relapse. We’ll be testing this theory later this month.
When she’s not in remission she’s just like every other kid. She has her strength back & there’s no way to tell that she has CIDP. She does sometimes get fatigued faster than the other kids or she won’t be as fast as everyone else. But other than that, she’s normal.
If you sense that you are relapsing the best thing you can do for yourself is contact your neurologist and get another treatment ASAP.
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