Tag Archives: Multiple Sclerosis

Another big timeline recap

Recapping my dates to show a timeline of my HSCT journey (and to remind myself of my dates!)

A quick review of my HSCT timeline.
I’m hoping to help give everyone an idea of time that it took for to get to where I am from that first NorthWestern email.

05/13/16: MRI showed that Tysabri was no longer working. Stopped Tysabri. No options left except Lemtrada or HSCT.

05/16/16: Called NW to ask if I could apply if I was having a relape
05/22/16: Sent initial email to NW
05/23/16: Contacted by NW to send paperwork/CDs

Waited because I got nervous and also my dad was having some bad vision problems that needed surgery.

09/07/16: Sent Paperwork and CDs to NW
09/13/16: Phone call from NW to come for evaluation.
09/20/16: Initial evaluation
09/21/16: Offered the treatment By Dr. Burt

Ty washout period was 6 months so I couldn’t start until Nov 13th at least. Also, insurance wanted more information to make their decision on whether to approve and pay for the treatment. NW had me do pre-testing early to give the insurance company more info. My insurance company paid for all the pre-testing. This was the period of time where I was fighting with insurance – HSCT was denied by Medical Mutual of Ohio and all three appeals were also denied.

12/30/16: NW calls me and suggests I apply for Part B Medicare, so I did.
01/01/17: Medicare Part B kicked in!
01/17/17: NW called with my dates
01/27/17: Mobilization
02/06/17: Harvest
02/17/17: Admit
02/23/17: STEM BIRTHDAY!!!

#hsct #stemcells #cureMS #nochemonocure #drburt #medicalmutual #medicare #treatment #timeline

They warned me about the Neupogen bone pain

And let the bone pain begin! This pain is no joke from these Neupogen shots. My sternum, sacrum, iliac crests and skull are killing me this morning.

I have been taking Claritin to ward off this bone pain and it’s been doing a pretty good job for the first 5 days, but today it decided to rear its ugly head.

I took some Tylenol so hopefully it will ease up with a little time.

***UPDATE: I had to cave and take a Norco a few hours after shot #5. The pain was a good 8/10. Not fun but doable. Just keep moving forward!***

#hsct #stemcells #cureMS #bonepainsucks