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So, to my loyal followers (and secret watchers 😉) thank you so much for all of you who have joined me through my journey and have continued to help me in bringing awareness to HSCT. Especially, it’s success in providing us with the 95-100% hope of permanent remission of RRMS (Relapse Remitting Multiple Sclerosis). To me, I call that a “cure” but if we use the words they use in the papers they have written (and are currently writing about the phase 3 multi-center trial that just ended in Novemer 2016) about this, they’ll call it “permanent” remission.
The things I am able to do now are truly life-changing. I had gotten so used to being sick with Multiple Sclerosis that I had forgotten what “normal” was and saw not much hope for my future. I feel as though I am seeing in HD with the brightness turned back up to normal. I didn’t realize how dark my vision had gotten. All I knew was that I hated driving at night and in the rain, and that I saw halos everywhere. Well, not anymore. It’s really unbelievable getting your sight back. And that’s just one of the amazing things that has improved for me after HSCT.
Feel feel to comment, if you have any thoughts or questions you’d like to share. If you’d like to speak on private look me up on Facebook or ask for my email 😉.
Love you all!!!
I am not very good at waiting especially when my left arm is getting weaker and I’m having blurry vision. I need my next set of steroids but I think my neuro is going to be nervous that I continue to refuse Lemtrada.
I wish I had an evaluation date so that I can tell my neuro that I’m legitimately moving in the HSCT direction. She’s good with me being in the study, but she feels my RRMS is too aggressive to wait too long. She agreed to do monthly IV pulse steroids, which is something for now. I just wish I had that date for evaluation. I think it may put the mild Lemtrada pressure to rest.