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.

Off the (Tysabri) Rebound

Someone asked if there is anything I wished I'd known before doing the chemo/HSCT procedure.

Yes. I wish I'd had more comparative safety data regarding HSCT versus FDA-approved immune modulating drugs. Dr. Burt's research, and information provided by HSCT patient-activist George Goss, were of great help in providing counterpoints to the anti-HSCT scare tactics my neurologist threw at me. But the scare tactics were traumatizing nonetheless.  I steadied my resolve to fight to the death and updated my last will and testament before heading to Chicago for my chemo treatment.

It turned out the HSCT/chemo risk was overblown, and the risk from the Tysabri I'd been on had been downplayed.  The following article hit the financial press just before the crippling MS rebound attack that resulted from my neurologist taking me off of Tysabri. MS rebound from a pent-up overaggressive immune system often happens when MS patients are taken off Tysabri.  The rebound concept wasn't really addressed in this article, probably because Biogen is still figuring it out as neurologists continue to prescribe the drug. Though the article does contain an NIH link to "worsening symptoms" resulting from coming off Tysabri. The technical term is Immune Reconstitution Inflammatory Syndrome (IRIS).  The article headline speaks volumes.

MS Patients Choose Death Risk With Potent Drug Treatment

Australians demand HSCT for MS

Aussie MS patients are justifiably angry. Their misinformed MS Society has helped shut down HSCT in that country. The society refuses to acknowledge that the procedure can be used to help patients recover from the intense level of chemotherapy needed stop aggressive MS in its tracks, as it did for me.

What's troubling is that the same shutdown might happen here in the US if our own MS Society decides to push in that unfortunate direction. I'm resistant to entertaining conspiracy theories, but it is difficult to fully dismiss the idea that money from MS drug companies might have undue influence on the talking points and policies of national MS Societies.  When I go to www.nationalmssociety.org, an onsite search for "hsct" or "hematopoietic" turns up scant information. This seems very wrong on a website with a homepage that leads with "A World Free of MS" and "Research for a Cure."  At the moment, the US National MS Society's policy toward HSCT seems to be one of benign neglect. Too bad, considering chemo and HSCT is the closest thing we have to a proven MS cure.

In this video, the Australian doctor's comments mirror what Dr. Burt at Northwestern says.  HSCT is a proven procedure, not an experiment. And there is no moral dilemma, since the stem cells come from each patient's own body.

The video also includes an explanation of the procedure, and some interviews with patients who have done it by traveling overseas.

http://au.news.yahoo.com/sa/video/watch/21715059/stem-cell-therapy-push/

Changed to the core by HSCT?

Well, this could explain a lot.

An interesting study in the journal Immunology, Oct., 2013, looked at immune system T-cell response after HSCT treatment compared to patients treated with natalizumab (Tysabri).  The upshot seems to be that HSCT resets the immune system to be like a normal, healthy individual, while Tysabri-treated patients maintain imbalanced/sick immune systems. This may explain why I continued to lose mobility during the two years I was on Tysabri. Though the drug seemed to slow the development of MS lesions, something was obviously still wrong with me.

Per the study summary: HSCT-treated patients had similar levels of Treg cells and of Th1 and Th17 cells as healthy subjects, whereas natalizumab-treated patients had lower frequencies of Treg cells and higher frequencies of Th1 and Th17 cells.   My interpretation of this is that there are not enough regulator cells in the natalizumab-treated patients to prevent the attack cells from launching autoimmune assaults on the myelin that protects nerves in the central nervous system.

These cellular-level observations also seem to explain why so many (85%) of Dr. Burt's patients appear to go into complete MS remission after HSCT. Changed from the core of the bone marrow, the immune system becomes normal.  With my HSCT completed, I look forward to further improvement, without MS drugs.


http://www.ncbi.nlm.nih.gov/m/pubmed/23721329/?i=10&from=autoimmune+diseases+after+hematopoietic+stem+cell+transplantation

WBC = Happy Valentines Day

Now that I'm home, weekly blood tests monitor my cell counts to make sure recovery is staying on track.  I'm pleased to say so far, so good. White blood cell count (WBC), in particular, is in the "normal" range. I'm getting out in public more, and am thinking about going into the office next week.  They have much work for me, I miss the gang, and it's time to get my bank account moving in a positive direction again.

I still have a few restrictions:  I must  avoid sick people, sushi, Chinese buffets, salad bars, gardening, plant potting, moldy basements or fraternizing with feral animals. Sadly, the animal restriction includes my mother's indoor-outdoor cats.  Though she keeps her house very clean, there is just too much risk from whatever a cat might drag in from the wild. My immune system is still redeveloping, so a cat scratch, weird raccoon infection (or who knows what) could set me back.  I will try to visit mom and dad half-way at a non-cat location soon.

Here's a quirky photo of white blood cells for Valentine's Day.