Ten Year Anniversary of Remission
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May 14, 2008 at 3:49 pm
I just came on to this site today for the first time in nearly ten years because I am celebrating my ten year anniversary of beginning to recover from CIDP. This morning, I ran three miles (mostly up hill) as part of the day’s activities. I was pretty beat after the run, but it’s because I am 46 years old and have probably had one too many cupcakes recently! In 1997-1998, when my son was just turning one year old, I was diagnosed with guillain barre, then with CIDP. I was put on very high doses of steroids as soon as I got the CIDP diagnosis, and it took me more than a year to wean myself off of those. I also had multiple IVIG infusions. The first three IVIG treatments did nothing to help me. I was bedridden for two months, and it took me nearly six months of physical therapy after starting to get better to begin to walk again. At one point, in my downward progression when neither steroids nor IVIG were having an effect, my doctors were talking about using chemotherapy to see if they could get my reflexes, balance, and the feeling in my hands, feet, arms and legs back. I started getting better after the fourth or fifth IVIG treatment. It was pretty random and it felt like a complete miracle.
I am writing now because in March of 1998, when I was at my worst point, I felt completely and absolutely hopeless and thought that I would be chronically ill and immobile for the rest of my life. There was nothing in my treatment that everyone else has not gotten–steroids, IVIG–that was it. My attitude was lousy, and I hated anyone who suggested if I had a better frame of mind, I would get better, so trust me, it was definitely not the “power of positive thinking” that did the trick.
After ten years, the only residual effects of CIDP are numbness in my hands and feet when I am in sub freezing climates and some numbness in my back. I have had another baby in the meantime (who is now 7 years old), Iwork out in the gym four times a week, and am I able to pursue all normal activities. No relapses to date (everyone please knock on wood with me when you read this). I did pray quite a bit while I was sick and I think that helped me, but it’s a very personal matter.
I am writing now because these forums, at least when I was reading them every day, didn’t have much from the people who made a full recovery. I was very very lucky. I have no explanation for my own getting better. Anyone who was with me at the time could tell you that I was in extremely bad shape.
All of the best to all of you.
Sincerely,
Liz W.
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May 14, 2008 at 4:59 pm
Congrats! Its good to hear a positive outcome. It doesn’t sound like it was easy either.
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May 14, 2008 at 6:46 pm
Happy Anniversary! Wow…you’ve come a long way. I had GBS and it will be 25 years for me in another month so I can sure appreciate how important it is to look at how far we have come! Keep well.
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May 14, 2008 at 7:31 pm
Hooray for you!!! It is good to hear from someone who is doing so well!!
Thanks for posting 🙂 -
May 15, 2008 at 4:12 am
hi there, your right it is fantastic to hear stories like yours. I just wanted to check, i may have missed it in your note, but are you on NO medication for CIDP? If this is right, how long is it since you were on medication, and did you just wean off the steriods and that was that!!!!! or were you coming off steriods and ivig together?
cheers and am glad to hear you are doing sooo well. -
May 15, 2008 at 8:54 am
That is nice to see how great you are doing! I think it is easier to look back at where you were and to see how far you have come, rather than up the mountain and how far you have to go:) It is hard sometimes to think of permanent disability but then something changes and you think maybe it won’t be permanent. Thanks for a great story! Gabrielle I would also be curious if you take any meds now or do they think it just burned itself out?
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May 15, 2008 at 9:22 am
In answer to the question about medication: no meds! I was on IVIG for a year and on steroids for about 18 months, so tha twas significant time after starting to get better. My original neurologist said that my recovery was due to the drugs and I needed to get monthly IVIG treatments, probably for the rest of my life. That was intimidating because, sooner or later, I would reach the lifetime cap on expense for my insurance company and I couldn’t afford to do IVIG on my own. I then went to the University of Pennsylvania for a second opinion (and to a Columbia Pres in NY for a third). The doc at Penn, whose name I now cannot remember, told me that he would be in favor of trying to cut the IVIG to see what happened because of the expense and the risks in getting the transfusions. So, very tentatively, I stopped the IVIG. That was nine years ago. I have not had an IVIG treatment since or any steroids since about 8.5 years ago. I was pretty scared after delivering my daughter that I would relapse, but I didn’t. Every once in a while when I am really really tired or run down, I feel like I might be having symptoms again, but so far so good. I also have to say that I am a lot weaker than I was before getting sick. That’s partly the natural progression of age, but my arm and leg strength–especially arm strength–has never returned. And, there is the big numb spot on my back where I probably had so much nerve damage that I’ll never recover from it. It’s not all good news, but it’s mostly good. Take care! CIDP is just about the worst thing that ever happened to me. I can’t be Pollyana-ish about it. And, I have to say that I was very very very depressed when I was in the depths of it and grasping for even one story of someone who got better. I hope this provides this for some people out there who may be feeling that there is no light at the end of the tunnel. I am an example of there sometimes being light at the end of the tunnel. But, I understand that the tunnel SUCKS. Pardon my bad language.
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May 15, 2008 at 9:50 am
One more point of clarification: when I say the strength has not returned in my arms, I mean STRENGTH. I was very athletic when I got sick and unusually strong for a woman. At this point, I have about normal strength in my arms for a woman my age, but am no longer “strong” or muscular. I lift about 10 pound weights in the gym to try to keep my arm strength up, but I was doing signficantly more than that before getting sick. So, I’m within the normal range, just not above average anymore. I want to make sure that I don’t leave the impression that I can’t lift anything.
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May 15, 2008 at 10:07 am
Liz,
Your story sounds so much like mine except I was never diagnosed with CIDP, only GBS. But I too have a huge spot in the center of my back that is numb, I have tingling in my toes and feet and weakness in the great muscles of the body. I uderstood what you meant about the weakness…it isn’t that you can’t lift anymore, but rather that is not like you could before. That is how it is for me. I don’t have the same stamina but again, I still can do a lot that most others can’t.Interesting that you are off all meds. I never had any meds once I came home but then again back 25 years ago they didn’t know nearly what they do today.
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May 15, 2008 at 11:41 am
My recovery was much more like GBS, perhaps. The reason I got the CIDP diagnosis was that the progression was very long. It didn’t bottom out for more than seven weeks. Glad to hear you are doing well after 25 years. Gives me something to shoot for! Take care, Liz
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May 15, 2008 at 12:03 pm
Hi Liz,
My 11 y/o son Kevin has cidp for 20 months now. We were about the 7-8 week plateau as well. Currently, kevin is on a 1 year schedule of once a month loading doses, then at the second year we are going to spread out to six weeks. Over all, he is doing well compared to others, but obviously some days are worse. Yesterday he was riding his bike with his friends for about 4 hours and he is paying for it today. I was wondering, did your feet and ankles trouble you, that seems to be the source of Kevies greates pain. I suspect it could be because tose muscles are not yet back to what they were, but I don’t know. Did you taper from ivig, or just quit cold turkey? How often and how much were you getting? Thanks for your responses, it gives us all a glimmer of hope!
Dawn Kevies mom -
May 16, 2008 at 10:03 am
Dawn, it sounds as though Kevin is doing well if he is riding his bike 4 hours! I was getting the maximum dosage of IVIG for my weight once a month for nearly a year. I am sorry; I can’t remember the exact dosage, but the cost without insurance would have been $10,000 per dose. I remember that, so it must have been a lot. I went cold turkey on the IVIG but was taking steroids until almost eight months after I stopped the IVIG because I was in the midst of tapering down from 80 mg/day of prednisone, which is what they gave me when my paralysis was getting worse and they wanted to stop it. So, I wasn’t completely unmedicated as I stopped. I had a lot more trouble with weakness and symptoms in the year or two after I started recovering because of lingering nerve damage. As you probably know, nerve endings grown back, so eventually it was much better. I have an eleven year old son as well and really feel for you having a child with this illness. You sound extremely strong and well informed. He is lucky. All the best! Liz
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May 16, 2008 at 12:31 pm
Liz,
Congratulations!!!! I am only 7 months with GBS but your story helps me to see that light at the end of the tunnel. It sure is a long tunnel!
Thank You
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Shirley
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