Not as clear as I had hoped

November 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.