Hello CIDP is back!!!!
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May 7, 2008 at 12:56 pm
No Longer in remission,
I have had 2 or 3 years when the CIDP stayed about the same level. I no longer had to take IVIG treatments or steroids or any of that other mind numbing stuff. Well the fun ended and the CIDP started back up with a vengeance. My hands and legs are getting weaker and I have been having terrible back pain. As well as lack of balance as well as really bad leg pain.
I have an appointment with a new Neurologist this month and I guess I am going to have to start treatments again.
This darn disease will just not go away, it just keeps working on you until I guess it finally wins.
Well just needed to vent a little bit.
Larry -
May 7, 2008 at 1:01 pm
Hi Larry,
So sorry to hear about this. It must be really frustrating for you – for your CIDP to come back just out of the blue. Did your symptoms come on suddenly (over a day or two) or more slowly. I can’t imagine thinking I was doing pretty well only to have the rug pulled out from under me again. Good luck with your new neuro. Hope treatment gets you back in to remission right away.
I will be thinking of you.
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May 7, 2008 at 2:44 pm
Hi Larry,
Sorry you had to visit us again. The good thing is you know you can get treatments and get better. The even better thing is that you are taking control quickly, it may be back, but YOU control IT!! Glad you are not in denial and your are acting on the situation promptly. Get better soon!
Dawn Kevies mom -
May 8, 2008 at 10:35 am
Hi Norb,
Thanks for the encouraging words from everyone.. To try to answer your question. I guess the CIDP has been slowly creeping back for a while. I have been getting slowly weaker for a while, but I really had a bad go around a couple of weeks ago that seems to be hanging on.
I guess I have been deluding myself that I was doing OK.
Larry -
May 8, 2008 at 12:46 pm
Hello Larry,
I “half know” how you feel. I have gone through five years of not needing any treatments and even though I remain stable and feel like I no longer have CIDP, I ALWAYS keep it tucked in my mind that if I am in a remission, CIDP CAN COME BACK. One very qualified neurologist in New York City told me I could have “burned out”. -
May 8, 2008 at 3:37 pm
Hi, Larry.
One of the frustrations with CIDP is that you never know when/if you’re going to relapse. I’ve gone as long as a year between relapses. Now I’ve changed to a progressive course rather than relapsing/remitting. But you never know. It could all change again next week!
Keep fighting and never lose hope.
Deb
London -
May 10, 2008 at 7:21 am
Larry,
I had really hoped that your “better” was going to be for a very long time. I am so sorry to hear about your exacerbation.
On the positive side, you know how to get in front of it and how to lnock it back down. Remember what it was like to feel good. I sincerely hope that you get back there again
Dick S
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