Member
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Join Date: Aug 2009
Posts: 642
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Member
Join Date: Aug 2009
Posts: 642
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Three Year Reboot Update
Hi everyone,
Three years ago today I went into the hospital for a reboot aka high dose Cytoxan. After 4 days of a brutal chemo regimen, I went home for a month of recovery where my immune system died and then regrew. Except for a 4 day period of intense complications requiring re-hospitalization, it went without a hitch. The hope/theory is that this new immune system does not remember how to be so sick with MG.
Three years later and I am more than pleased. I was hoping to get "two good years" so this is just gravy! Yes, I still use MG meds, but now they actually work. I was refractory before, and despite being on large doses of 3 meds, I still was classified as IIIB in severity (V being the worst, on a vent, etc).
I consider myself to be around 90% symptom free most of the time. My stamina and strength are not as good as an unaffected woman my age, but I am totally functional. I suffered mostly with bulbar and ocular symptoms and aside from some occasional swallowing issues and slight blurry and occasional double vision, that is good, too. Most days I don't really even think about my symptoms which is a great improvement from pre-reboot times. Those days were often spent just trying to stay minimally functional, and often failing at that.
Hope this helps someone. Feel free to ask any questions.
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