Denial Hurts, Acceptance Heals (sort of)
AnonymousApril 18, 2011 at 5:12 pm
I was dx w GBS Jan 17 2011, after 3 days of tingling hands and weak arms and legs I noticed doing yoga. An active guy, I’ve done Tai Chi for 30 years, so learning to accept that I have CIDP and not GBS has been a challenge. At 53, I’ve had enough experience in life to know you can’t fight city hall about your fate. You can actually grow from limitations. Still, I get angry, scared and resentful as I think how suddenly my life has changed. I will be selling my sailboat, and narrowing my activities down to what I can handle. I have a loving and supportive wife and two great kids moving out into the world, who I watch with pride. I have much to be thankful for.
I have a question for the forum: I’ve had 4 sessions of IVIG (4 days in hospital, 2 days 3 different times at home). After each one I gained back considerable strength, but this last one ended yesterday and I am actually weaker and more numb. Now that its 3 been months, my NJ neuro has decided its in fact CIDP and has called in Prednisone to the pharmacist. I’ve decided to hold off taking any until I consult with a neurologist in NYC I saw in March who said you should do ten IVIgs before trying something else. He’s written about CIDP in journals so I figure he’s more knowledgeable than the NJ neuro. Has anyone doing IVIG had increased weakness and numbness after one of the sessions, or does that mean I am no longer responding to IVIG?
By the way, this forum is a godsend. Really!
AnonymousApril 18, 2011 at 11:54 pm
I can’t really give any info on getting weaker after an infusion as it’s never happened to my daughter (knock on wood!). There are people here who have reported the same thing happening to them & I believe they usually regain strength after a few days. I’m sure they will respond to you.
I did want to respond to you selling your sailboat. I wanted to suggest that maybe you should hold off on that & not rush into it. Maybe wait awhile to see how you recover. Many MANY people go on to live nearly normal lives. Some posters here have run marathons! I believe there was a poster awhile back that went water skiing. CIDP does NOT mean you have to give up sailing.
My daughter was dx’d with CIDP at 4 years old. She couldn’t run, jump, walk up stairs, feed herself, open or close her hands, etc. She has been on steady amounts of IVIG over the last few years & in the last year she climbed a 20 foot rock wall to the top & rang the bell! She’s also roller skating & learning to do the tricks ice skaters do.
My point is some people get better faster than others. You are still new to this. You do not know how you are going to recover. It sounds like you were a pretty active guy before CIDP…that will make your recovery easier.
PS, I would wait to the speak with the dr in NYC about the steroids. If you are responding well to the IVIG then there really is no need to add the ‘roids. Do a forum search for a post with a link to a conversation with Dr. Dyck out of the Mayo clinic in Minn.
AnonymousApril 19, 2011 at 11:41 am
Responses CIDP sufferers have to the standard treatments are all over the map. Some do really well on IVig for a lifetime, but many begin to have no response after varying lengths of time on the treatment. I never responded to IVig nor to prednisone, though the latter at least halted the progression of the disease until I was able to get a stem cell transplant at Northwestern Memorial Hospital. I believe I am now disease-free, based upon complete cessation of all CIDP interventions with no progression of the disease and, in fact, slight improvement since the SCT. You may want to continue with IVig for awhile, as has been recommended, since you had an initial positive response. Also worth trying is plasmapharesis. Prednisone is far cheaper, but you cannot be on it for very long unless your dosage is very low.
I’d hold off on selling my boat just now.
Oh, I see Kelly gave the same advice.
AnonymousApril 19, 2011 at 3:38 pm
Yes sometime I feel worse after IVIG but it only lasts a few days and then I notice that I am stronger and feel better. Give it a bit of time. I do have to have it monthly though…
Don’t sell the boat! Also give this time,
If the sailboat is something that you really enjoy but right now find it a bit too much to handle find someone that you can take along to help out.
Don’t give in to the CIDP! You might have to alter or change things a bit to make them easier but don’t give up!
Hang in there,:)
AnonymousApril 19, 2011 at 9:44 pm
Thank all of you for suggesting I keep the boat. Tonight, two days after IVIG, some strength is finally returning. I even did a little yoga. Reading your comments, it dawned on me that life may have to change, but doesn’t it always? You helped put the wind back in my sails.
AnonymousApril 20, 2011 at 4:10 pm
Anastasia52 – I don’t remember if we’ve discussed this before but I was wondering if you could point into the direction of the studies showing that many people stop responding to IVIG.
This is obviously something I need to be aware of as Emily has been on it for 5 years. I want to make sure I’ve fully researched that possibility.
If you’ve already shared that info with me then I apologize. I’m going on lack of sleep for weeks now & I feel like I’m losing my mind sometimes, LOL.
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