Confessions of an HSCT Survivor (article series)

[ActiveMSers]

If you've ever wondered what it's like to pursue a stem cell transplant (HSCT) for your multiple sclerosis, I am writing a series of articles with the straight, unvarnished scoop for MultipleSclerosis.net. Here's the first piece.

First Steps: https://multiplesclerosis.net/living...hsct-survivor/

[Afrayedknot]

HSCT for me?

Hi Dave
I’ve been reading your alternate viewpoint. I’m torn now.
I’m 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 don’t 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 don’t 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. I’m starting to resign myself that this is the path god wants me to take.
I don’t know. I guess I already know your point of view. I still wonder want you would do if you were me.

[ActiveMSers]

AFK, that's a tough call. And I honestly don't know what I would do in your shoes. My decision was pretty easy--I didn't get into the Lemtrada trial that was going on at the time and I was cratering after failing all other meds, so it was HSCT or bust.

For those newly or recently diagnosed, the brain has a tendency to amplify everything related to MS, potentially interfering with prudence. That said, two neuros are recommending aggressive treatment, and you were approved for the trial, which means it is paid for and will further critical medical research.

Best of luck and I don't envy your situation. Keep us posted and keep up the good fight.

[Afrayedknot]

Thanks for your quick reply. I value your input.
I have an appointment with yet another Neuro in March. If I get the same kind of feedback, I think I may be making a contribution to science.
Banzai!

[ActiveMSers]

Good deal, AFK! Keep us in the loop and I hope your MS takes a chill pill.