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Old 02-16-2018, 07:01 AM
Afrayedknot Afrayedknot is offline
Junior Optimistic Misfit
Join Date: Feb 2018
Location: Toledo
Posts: 8
Default HSCT for me?

Hi Dave
Iíve been reading your alternate viewpoint. Iím torn now.
Iím a 45 male. Diagnosed RRMS a year ago. Took a year for the diagnosis from first symptoms. Meds are NOT helping.
I saw Dr Burt two weeks ago. Dr Burt quickly examined me and cut to the chase and leveled with me. Bottomline, he said my prognosis was not good. I donít know what he is seeing on my MRI that has him concerned. He did mention I have a lesion along the entire length of my neck. Do I have the aggressive type of MS? All I know is this thing keeps getting worse. He thinks HSCT is my best course and invited me to the trial.
He put me on prednisone to help my inflammation. I notice it helps. But, I have to washout the tecfidera for three months prior to mobilization. I donít like this.

My other Neuro is geared up too. I asked my Neuro about Ocruvus. He was leaning me towards Lemtrada as a bigger hammer for my case. Dr Burt was skeptical about Lemtrada for me. Do I go the HSCT sledgehammer approach? The risks are scary. This is all so depressing.
Insurance approved me for the trial this week... But I have to get 2 days of pretests done to make sure I am ok for treatment. Crazy. Everything is moving so fast. Iím starting to resign myself that this is the path god wants me to take.
I donít know. I guess I already know your point of view. I still wonder want you would do if you were me.
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