ActiveMSers Forums  

Go Back   ActiveMSers Forums > ActiveMSers.org Forums > Dave's SCT Journey

Reply
 
Thread Tools Display Modes
  #1  
Old 02-13-2018, 11:59 AM
ActiveMSers's Avatar
ActiveMSers ActiveMSers is online now
Dave @ ActiveMSers
 
Join Date: Jun 2008
Location: Albuquerque, NM
Posts: 3,206
Default Confessions of an HSCT Survivor (article series)

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/
__________________
Dave Bexfield
ActiveMSers
Reply With Quote
  #2  
Old 02-16-2018, 07:01 AM
Afrayedknot Afrayedknot is offline
Junior Member
 
Join Date: Feb 2018
Location: Toledo
Posts: 6
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.
Reply With Quote
  #3  
Old 02-16-2018, 12:28 PM
ActiveMSers's Avatar
ActiveMSers ActiveMSers is online now
Dave @ ActiveMSers
 
Join Date: Jun 2008
Location: Albuquerque, NM
Posts: 3,206
Default

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.
__________________
Dave Bexfield
ActiveMSers
Reply With Quote
  #4  
Old 02-16-2018, 01:17 PM
Afrayedknot Afrayedknot is offline
Junior Member
 
Join Date: Feb 2018
Location: Toledo
Posts: 6
Default

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!
Reply With Quote
  #5  
Old 02-23-2018, 02:22 PM
ActiveMSers's Avatar
ActiveMSers ActiveMSers is online now
Dave @ ActiveMSers
 
Join Date: Jun 2008
Location: Albuquerque, NM
Posts: 3,206
Default

Good deal, AFK! Keep us in the loop and I hope your MS takes a chill pill.
__________________
Dave Bexfield
ActiveMSers
Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump


All times are GMT -4. The time now is 01:06 AM.


Powered by vBulletin® Version 3.7.0
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
ActiveMSers