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L Jones's avatar

I am reading this now as I came onto the MS-Selfie to search for "HSCT and Ocrelizumab", this post popped immediately up! I am reading Dr. Richard Burt's book "Everyday Miracles" and also just listened to a recent podcast from the OMS charity's Living Well with MS podcast. The more I read, the more I am concerned I should be doing more!

I have been on ocrelizumab since diagnosis in 2018. I believe I am doing well - take an integrative approach to living with MS (medication, exercise, nutrition, sleep, VitD, no smoking, meditation, stress reduction); however, after learning more and more about long term immune suppression and progression of MS without lesions while on ocrelizumab....well, I'm simply overwhelmed. I suspect others reading the book are in a similar place as me..

Ironically, at diagnosis - the inpatient neurologist (in the ER) mentioned stem cell transplant to me then. I didn't understand anything at that point - was simply totally lost. I went on to an MS Specialist who immediately recommended Ocrevus. I can't help but think maybe I should have followed up back then.

But.....coulda, shoulda, woulda is not helpful....so, it's onwards! What should I do now? Any recommendations for best educationing (sic) on it all? I am absolutely going to be discussing this with my MS Neuro.

thank you for every single thing about this MS-Selfie - it's improved and improved and improved!

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Sally Pritchard Jones's avatar

Having received alemtuzumab as a first line treatment (1st round 2017) I am now facing a decision as to whether to do HSCT or receive ofatumumab. HSCT would be my preferred option because I don’t want to be long term immune suppressed. My only concern though is how effective it will be for me given that alemtuzumab has not stopped disease activity. I would be grateful for your view

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