AnonymousNovember 28, 2006 at 12:51 am
Many of us never really remit; our symptoms are kept at bay only by our treatment regimen. Some of us in that group, for whatever reason, get our treatment only after we start to have an increase in symptoms. For those of you in that category, how long does it take from the time you notice an increase in symptoms to the time you are (or would be, as a guess) in very bad shape, like unable to raise your arms to your face or get up from a chair?
AnonymousNovember 29, 2006 at 1:31 am
Excellent poll! In my case, I don’t relapse, I am progressive, slowly progressive fortunately. Those who are progressive and don’t relapse, there is a spot for you to vote as well !!
I am suprised by the results of the poll so far. I will keep my comments to myself until the poll is over, but I hope we can comment later
AnonymousNovember 29, 2006 at 10:35 am
Emily is in a wierd category with this. I put in 4 weeks plus because that is when she has pain in her feet & legs. But her eye is the problem. If she goes longer than 10 days her eye will relapse and by 14 days it’s completely paralyzed & stuck in the inside corner of her eye socket. If it weren’t for that stinking eye problem she would only need IVIG once every 4-6 weeks.
AnonymousNovember 29, 2006 at 1:02 pm
From Dick’s and Kelly’s responses, I see I was not as clear as I had hoped. Sorry about that. Perhaps the poll question should have been: assuming your treatment is quite effective, if you do not get treatment at the right time, how rapidly do you fail?
Dick, I think there is a problem in terminology. Relapsing/remitting seems to mean one of three things: the disease remits on its own, without treatment, then relapses some months to years later; the disease remits with treatment, but the treatment can be removed for months before relapse; or the disease remits with treatment, but relapses if the treatment is removed for just a short time. Progressive can mean that the disease gets worse and worse without treatment; the disease gets worse no matter how aggressive the treatment; or the disease would get worse without treatment, but arrests with treatment and perhaps improves. I think the last two meanings for each type overlap considerably. I would categorize myself as progressive, but I think most people would categorize me as relapsing/remitting.
For me, if I don’t get treatment, my “relapse” is rapid and devastating. It is so devastating (effectively a quadriplegic) that it would be unethical to wait to see if the disease went into remission. However, with treatment, I am very nearly fully functional, with only very minor deficits (~70% pre-disease grip strength, difficulty getting up off the floor). It sounds like your treatment regimen is not overcoming the progression in the short-term (months), but that if you delayed treatment, it would not make much difference.
Kelly, I did not think about Emily’s case. I know about her problems with her eye and I think Emily is unique. Thanks for explaining your answer. What I really meant was not so much the interval between treatments, but more if Emily somehow did not get her IVIg, discounting her eye for the moment, how rapidly would the pain go from noticing it to excruciating.
For all of you, I hope the answer is a guess, because you get your treatment promptly. In my case, the answer is based on experience, because of how rapidly I decline and the variability in the interval.
AnonymousDecember 1, 2006 at 1:14 am
I also think people mis-apply the “progressive” term as well. I know a lot of people have relapses, and then get some recovery. BUt over time, their over-all condition worsens. Even though their condition has “progressed”, they would be classified relapse/remitting, because the disease comes and goes. In my case, it nover goes away, there is no “recovery period”, hence the “progressive” tag.
It is always difficult to put a defining tag on CIDP when our cases vary so much from person to person. And in many cases our symptoms can swing from day to day.
But I think talking about it and comparing “war stories” with each other help us understand that there are others out there dealing with it, and we can learn from each other to improve our quality of life.
AnonymousDecember 23, 2006 at 6:00 pm
Hi There! I am so happy to have found such great resources! I am a relative “newbie” – first diagnosed in October, 2006. My symptoms were, at first, very slow with intermittent days (sometimes a week) of semi-normalcy ranging over several months. But by October I was so weak in all of my limbs that I couldn’t walk, lift, hold anything, and slept all the time. Fortunately, I found a wonderful neurologist who put me immediately in the hospital for IVIG. It was a 7 day stay (5 on IVIG and 2 for surgery because I had fallen and broken my leg and needed repair) and I left the hospital feeling great. Altho I couldn’t walk (leg again) normally, my strength came back full force. I was hoping I would be one of those “miracle cures” that never relapsed. BUT! Two months to the day, I began having all the same symptoms. We tried a two week course of Prednisone and I got worse and worse. Evidently, I am not a good candidate for the steroid regimen! Anyway, my neuro hooked me up with outpatient IVIG infusion at a local hospital. Every day on the IVIG I felt better. Yesterday was my 5th day and, while I am extremely fatigued, I am walking, slowly regaining hand strength, and able to shower again (good grief! who would have thought pre-CIDP that showering would become such an important achievement!) The only thing different with my second bout is that I am VERY emotional! Perhaps it is the Prednisone, don’t know, but can cry at the least little thing! I have learned to be very aware of that first symptom and I will not wait as long to get IVIG (two weeks) in the future. By the way, does anyone know if shorter IVIG treatments (2 vs. 5 days) as “boosters” would prolong the good days? Best of health to all of you!
AnonymousDecember 25, 2006 at 12:58 am
Since my relapse in April 2006, I had been in “remission” for 12 years. I had very bad bouts of pain and I was given different types of pain pills, shots, physical therapy, etc. I was told it was not the CIDP again, but I have my doubts now.
Since April I have had IVIG every 4 weeks. My IVIG was due on 14th & 15th of December. The week that it was due I started to have numbness in my left foot, pain again, it progresses every few days. Today, right now I have numbness in both feet, pain in my arms, and numbness while trying to type this. It is also more difficult to hold up my head without support, of course right now, I wake up feeling pretty good, but by the end of the day,things change.
After saying that, it is not as bad as it has been in the last few months. I plan to call my doctor after the holidays and let her know the progression. It is scary not knowing what I will wake up to everyday, but I have high hopes that it will be okay. I am still on 10mg of prednisone. I guess there is no perfect time to see what will happen when the IVIG’s stop.
[COLOR=”Red”]Happy Holdays and God bless to all!!![/COLOR]
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