I've been so happy for you, Grace, that the rituxan treatments have been working. How does the doctor know when you have reached your saturation point? They don't wait until you might be on the way to relapsing, do they? I don't know what mitroxantrone is - is it another chemo drug? (Am I asking enough questions Please don't beat yourself up about getting your head in the place you think it needs to be. You have lots of company in that department, believe me. I don't think anybody can have this disease without their mind wandering where we would rather it didn't. You handle your disease very well! We all have "those" thoughts Grace from time to time.
We love you Linda ----- Original Message ----- From: Grace M.<mailto:[EMAIL PROTECTED]> To: tmic-list@eskimo.com<mailto:tmic-list@eskimo.com> Sent: Thursday, November 08, 2007 10:40 AM Subject: [TMIC] Neuro visit. On Monday I had my three month neuro check. Everything seems to be going well---for now. One thing that we discussed, is the fact that so far, they don't know how many rituxan treatments an individual can take before reaching a saturation point. I asked him what the plan will be once I reach that point, and he said it would either be monthly plasmapheresis, or mitroxantrone. On November 15th, I go back to Pittsburgh to the neuro-opthalmologist, and also for my blood tests---BCell subset panel, complete CBC and differential, and another NMO IgG test for the Mayo. He said that at this point, they are no longer given the actual titres for the NMO IgG, but rather just a *positive* or a *negative*. He would like to see the actual numbers for comparison, as would I. Guys, I am thankful to be doing fairly well at this point, but am so tired of all of the treatments, tests, etc. The thing is, I will relapse without them, and I certainly don't want that to happen. The thought of blindness and paralysis again, terrifies me. Even with the treatments, there is no guarantee and people are still relapsing despite aggressive measures. I just wish that I could get my head to the place that it needs to be to cope with the implications of this disease. Grace
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