Wednesday, June 4, 2014

Questions about my treatment

Some readers have asked if my current state of partial disability is from the HSCT treatment or from  the MS. It occurred to me that others wondering if they should do HSCT to stop their MS might have the same question, so I'm reposting here.

Since I've done nothing but improve since HSCT, I can say with reasonable certainty that my remaining disability is from the MS, not the HSCT. I expect to continue getting better, but wish I'd done HSCT sooner so my recovery could be shorter. Getting accepted and scheduled for HSCT treatment took more time than I expected. I thought I had more time, but then the Tysabri rebound attack hit me, increasing the urgency of the situation. Below is a rough timeline of my MS setbacks and treatments before HSCT. It's been a long seven years.

2007
Diagnosis due to leg and vision issues.
2007-2010 Treatment: Steroids and Betaseron injections. Betaseron made me moody and depressed.

Relapse with excruciating burning sensation in hands.
2010-2012 Treatment: Stopped Betaseron. Started Steroids and Tysabri infusions. Hand burning didn't go away.

Decline in mobility (footdrop, ataxia, heat intolerance) and positive test for JC virus.
2012 Treatment: Stopped Tysabri in September 2012 due to PML brain infection risk. Neurologist planned to transition me to BG12/Tecfidera, which was supposed to be FDA-approved.

January 2013: BG12 FDA approval delayed. Neurologist increased dosage of IV steroids due to concern of Tysabri rebound. My insurance company rejected neurologist's request for IVIG treatments, which may or may not have prevented the Tysabri rebound that was to come.

May 2013: I began corresponding with Dr. Burt's HSCT study administrator. I sent him my medical records.

June 2013: BG12 finally approved, but too late. MRI showed a massive MS rebound attack on my brainstem and brain motor strip. My legs locked up. I got double vision and became incontinent. I began taking BG12 anyway. Experienced the typical BG12 side effects of intestinal distress and hot flashes.

June 2013- December 2013: More IV steroids.  Chest catheter installed. I did regular plasma exchanges  (PLEX) to remove some of the attacking antibodies. This provided some relief, allowing me to walk with a nursing home walker. But my condition degraded whenever I stopped PLEX.

September 2013: Met with Dr. Burt in Chicago. He agreed to treat me with HSCT. I would soon part ways with my old neurologist.

December 2013: Bone marrow stem cell harvest in Chicago. I stopped BG12 and plasma exchanges. Neopogen injections used for stem cell harvest aggravated my MS spasticity, but the small dose of Cytoxan chemo eventually damped down my immune system enough to provide some MS symptom relief.

January 2014: Received five doses of chemotherapy to wipe out my immune system. My stem cells were transplanted back to reset it.

June 2014: I'm slowly, very slowly, getting better. Dr. Burt says recovery and nerve healing may continue for another two or three years. My only remaining MS issue is that walking is very difficult and usually requires a cane. My wheelchair goes unused. I take no more drugs of any kind for MS.

No comments:

Post a Comment