Nerve Damage Recovery After MS

"Healing is a matter of time, but it is sometimes also a matter of opportunity."
– Hippocrates, 400 BC


HSCT Worked!
HSCT did what it was supposed to do for me. Eight months ago it reset my immune system and stopped my MS. It was a rare opportunity and what some might consider an extreme measure to heal myself with modern technology. My only regret is that I didn't do HSCT sooner. My health has been phenomenally good since getting a new immune system that no longer attacks me. Without living in a bubble, I've avoided any serious infections or illnesses. It feels great being off MS drugs. No more needles or nasty drug side-effects! When I look at myself, I do not see someone who has MS. For me, MS is over.

But… My nerves and mobility are not 100 percent recovered. While most of the MS symptoms have abated, I still walk poorly and my fingers aren't coordinated enough to play guitar. Nerve damage from MS heals slowly. For now, I'm very grateful to be able to type, hold a dinner fork, drive my car, and walk a few blocks. Healing improvements are happening, but slowly.

Miracles Happen Slowly
The bone marrow stem cells used in HSCT reset the immune system and stop the autoimmune attacks, but they don't heal nerves. If my recovery pattern follows that of the few hundred trailblazing HSCT MS patients before me, Dr. Burt says natural nerve healing and improvements will likely keep happening for three years. With the autoimmune attacks halted, nerves can remyelinate and heal. My body can also find new nerve pathways. Burt's advice is to drink plenty of water, eat a normal healthy diet and do physical therapy.

HSCT is no shortcut. Dr. Burt's research has spanned 30 years, with at least 10 more years to go. The stakes are much higher than just one patient. He's following painstaking research protocols with his Phase III study to give HSCT the best chance of receiving FDA approval for treating many thousands of autoimmune patients in the future.

My Recovery 
Meanwhile, there's no shortcut for me, either. I get impatient, wanting to charge ahead to do whatever it takes to walk normally again. Maddeningly, I have to go slow, can't do it alone, and need help. Fortunately, just as I found Dr. Burt, I've also found and assembled my own personal rehab team. Kim, Mike and Matt are amazing. My training regime and rehab team is as follows:

Walking (with and without a cane, as much as possible)

Daily Stretching and Yoga (at home)

Daily Stair Climb (up and down nine floors)

Pilates Twice a Week (Kim Taraschi at New Movement Pilates)

Physical Therapy (Mike Fricke at Pro Physical Therapy Muskoskeletal Balancing)

Acupuncture Twice a Week (Matt Bierschbach at Acupuncture Center of Minneapolis)



Victory is won not in miles but in inches. Win a little now, hold your ground, and later, win a little more. 
– Louis L'Amour 

Good Results with HSCT

Thanks to everyone who has been so supportive of me during my past difficult years fighting (and beating!) MS. I can't begin to list everyone. Just please know you are appreciated. I'm healthy and learning to walk again. The cane I carry is mostly for menacing feral cats, small dogs and naughty children who might get in my way. 

Since HSCT, my walking has improved and the wheelchair goes unused. No more MS drugs for me! I currently do Pilates and PT to rehab my gimpy gait. Eight months after treatment, it appears I am one of the HSCT success stories. At some point soon, I hope to get rid of the cane entirely. 

Of the hundred or so HSCT patients who were treated before me, the results are promising. The following paper came out the year prior to me doing HSCT with Dr. Burt in Chicago. It's one of the best summaries I've read.

The development of hematopoietic and mesenchymal stem cell transplantation as an effective treatment for multiple sclerosis

...Progression-free survival after HSCT, measured by neurological improvement, decreased disability, and improved quality-of-life, was 82% at 5 years and at long term follow-up overall clinical response was 80%…

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3708509/

Celebrate Life (without MS) After HSCT

It's been eight months since I left Chicago with a new immune system and a chance to rehab my body and heal my nerves. I've been amazingly healthy, braving public transit and other germ-ridden environments uneventfully, so the immune system is doing its job.

Rummaging through my travel bags, I happened to find this nice card signed by the stem cell transplant team who worked with Dr. Burt on me. I'm not an overly sentimental sort, so I won't be framing it for my wall.  But  I can't just throw it away, either. It's a reminder of  the immense amount of care I received from some extremely qualified health professionals, every one of them smart,  kind and wonderful human beings.  Thank you all!