Petition the MS Society

  It seems an unwritten rule that advocacy must become part of one's life after going through a life-changing medical procedure. Fortunately, I don't have to do a fundraiser or ask you for money. But I will ask for a little more of your time.

  Please help get the word out by signing the petition to encourage the MS Society to become an information resource about HSCT. Their reach is far greater than my little blog could ever be. As an organization that headlines its website and fundraisers by talking about an MS cure, their silence on HSCT is unacceptable. Thanks to my friends Heather and Gina for alerting me.  CORRECTION: The link shown for the Northwestern Immunotherapy website should be a .com, not a .org.  http://www.stemcell-immunotherapy.com

Why It's Important

 HSCT stops the autoimmunity that causes MS at a molecular level. It's a scientifically and clinically proven procedure that put my MS in full remission. Dr. Richard Burt, at Northwestern University, performed the procedure on me. This got me out of a wheelchair, restored my vision to normal, ended extremely painful burning sensations on my skin and stopped the indignity of incontinence. I no longer take MS drugs. Remission may not be a cure, but it is the closest thing we have right now.

  My story is not a fluke. Many people who did HSCT for MS and other autoimmune diseases 10 years ago are still in remission. A growing body of research and real-world patient experience like mine is defining the procedure's potential to help people with aggressive inflammatory relapsing-remitting MS.

  Doctors, patients and the MS Society need to know the updated facts about HSCT. My doctor had old, discouraging and incorrect information. The MS Society was of no help. I had to do my own literature review on NIH websites and advocate forums hosted by previous HSCT patients. Finding out about legitimate medical procedures should not be as difficult for patients as it was for me. It's time for the MS Society to help us get the word out.

http://www.change.org/petitions/national-multiple-sclerosis-society-multiple-sclerosis-patients-want-to-know-about-hsct#

The Long Walk

I just walked 200 yards without a cane! This is remarkable, considering what happened to me in 2013. Summer through winter, my brainstem and motor cortex was attacked by extremely aggressive MS. Those attacks had me in, out, and back into a wheelchair during multiple cycles of muscle-spasming agony, vision disruption, incontinence, invasive stopgap treatments, fear, anger and frustration. I could not walk, drive or work during most of that time. Signals just were not getting from my brain to my body properly. It was like I was a car with fouled spark plugs and a corroded, shorting out distributor. My engine was hard to start, and tough to keep going.

It's now been one and a half months since I completed HSCT treatment. The inflammation has been stopped, and I feel so much better. I'm back working, driving, walking without assistance, seeing clearly, living independently, and not taking any MS drugs. To help affirm that I'm not just fooling myself, I visited my new neurologist last week. She ran me though all the tests she did back in December and compared her notes. I am her fist patient to actually go through HSCT. She was amazed at my mobility and sensory improvements, and that I no longer take any drugs to treat MS, pain or muscle spasms. I hope to work with her to spread the word about HSCT so that other MS patients may benefit from this life-saving procedure.

Despite my promising results so far, HSCT isn't an instant-healing miracle. Getting out of bed or standing up out of a chair is still a challenge. I tend to need a cane in the morning, but by afternoon, I don't need it. If other patients who have done this before me are any guide, I should be doing significantly better five months from now.  To ensure that happens, I'll be starting physical therapy soon. The miracle will happen slowly. I just have to keep believing and work for it.

And though it is too early to do so yet, I'm starting to think about donating my mobility assistance devices to the MS society. My collection includes an electric wheelchair, a nursing home wheelie walker and a cane.  And the manual wheelchair borrowed from Goodwill, the one my friend Doug helped me acquire to get my crippled butt through the airports and to Chicago, I will return with a new wheel that no longer pops off whenever it catches a ridge in the pavement. Even worse than being disabled in a wheelchair is having a wheelchair that's also afflicted. Hopefully the next user will have an easier time.

Quick Update

My blog posts have become more infrequent now that I'm getting busy with work. But that's a good sign. I'm working again.  Occasionally I go out with friends.

Blood tests show I now have normal immunity and blood cell counts.  Not bad for being just a month out of the hospital where I had no immune system. Still, I'm being careful to avoid infections as the doctor ordered.

Physically, it's a  slow, steady recovery from MS.  I'm still walking with a cane, but I hope to be rid of that before too long.  Starting PT in a week or two.  It's frustrating to be clumsy and slow, but it sure beats using a wheelchair or a nursing home walker.  Still, I get impatient and want it all back now! Patience must prevail. 

Some notable progress since the chemo/HSCT treatment includes: normal bladder control, sensory improvement in my hands (Wow, I can feel things again, not just the 10 out of 10 pain scale burning sensation my hands have suffered the past two and a half years!).  And I have regained the ability to step in and out of my bathtub by lifting my knee, rather than having to drag myself over. Small victories to some, but huge to me.  I  believe the walking will just keep getting better.

And, no small bonus, I'm thrilled to be not taking any MS drugs!  Life without side effects is pretty sweet.