Quote:
Originally Posted by Brennan068
So, learned something from Dr Nicolle that didn't match what I'd found through various Internet research attempts by me; he filled in the gap quite nicely.
1. I will likely not go into full drug-free remission ever.
2. I am effectively in "Remission" as far as Neuro's measure remission for MG. My MG is very well controlled with a very low dose of Mestinon.
3. 95% of those with MG are on some kind of drug therapy for their lives. That leaves a very small number of people who land in drug-free remission.
4. Thymectomy for a thymoma is unlikely (it is not impossible that it will, just very unlikely) to result in full drug-free remission.
5. Thymectomy with no thymoma (but a hyperplastic thymus) is what they are talking about when they cite remission rates for Thymectomy.
6. The small number of those who have thymectomy for thymoma that go into remission do so because the thymus tissue surrounding the thymoma was hyperplastic.
While it was not the news I had wanted, it is a relief to have my expectations reset to where they are realistic.
Brian.
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first, I fully agree that having realistic expactations is a relief. being given false hope is just confusing and dissapointing and doesn't let you really deal with what you have to deal with. and its great to find someone that is ready to honestly discuss it with you and answer all your questions.
but I also have to admit that I am a bit confused by what you say-
I am effectively in "Remission" as far as Neuro's measure remission for MG.
are you in "remission", which I would think means no symtpoms or signs of the disease, or are you not?
and how do neuors measure remission? did he explain it to you?
alice