Point A ------------Hematopoietic Stem Cell Transplant

Now that you all know I'm in Chicago about to undergo a Hematopoietic Stem Cell Transplant (HSCT), I felt like I have some missing pieces to fill in.  I know some have asked about my symptoms.  Did I try any disease modifying medications?  Other than my doctor telling me about HSCT, did I research this?  Did I try a holistic approach? I hope to answer some of these questions in this post.  If this doesn't interest you, leave now and come back another day for our regularly scheduled programming.  This will be a lengthy post, but I promise they won't all be this long.

My earliest MS symptoms started in the summer of 2012.  I happened to be reading about my doctors' recovery after his stem cell transplant.  He mentioned that he was regaining sensation in one of his big toes, something he hadn't felt in years.  I remember thinking to myself, "What a coincidence, my left big toe is numb too!".  I quickly reasoned that I had just worn my flip flops too long that day.  Fast forward several months to when I was visiting my parents in San Diego at Thanksgiving.  My dad and I set out on our traditional hike up Mt. Woodson.  It was a gorgeous day, as most days are in San Diego, and we finished our hike without incident.  When I woke up the following morning I noticed my thumb and forefinger of my left hand were numb...weird, I must have pinched a nerve.  This continued for the rest of my stay, along with a massive headache and more than my usual I-have-two-young-kids fatigue.  Being the good nurse that I am...I ignored it all.  The numbness then spread to my entire left side, so after two weeks, I told my husband and made an appointment to go see Dr. Pfefer.  An MRI was ordered and he told me at that appt. it could be MS...amongst other things.   The MRI showed I had several old, non-enhancing lesions, and a significant sized enhancing lesion on my cervical spine (C-4 to be exact) as well as several in my brain.  MS was confirmed and I went to see my neurologist.  Dr. Pfefer mentions this in his talk that I have posted in my links on the side, but it bears repeating.  MS is an autoimmune disease, but it manifests itself with neurological symptoms so patients are handed over to a neurologist for their care. Neurologists treat the symptoms of MS, but MANY are not up to speed and resistant to new treatments.  In their defense, most do the best they can with a tricky disease and they are trained in a certain way, but I digress...

I was given an IV course of steroids to decrease inflammation in my c-spine and I was instructed to start Rebif.  Rebif is part of the front-line CRAB (copaxone, rebif, avonex, beta-seron) immuno-modulating drugs that MS patients are prescribed.   At their very best they are only 30% effective in slowing down the disease, not stopping it and not repairing any disability. These drugs effectively tell your immune system to not be so vigilant.  They make you feel yucky and they're painful to inject. I might add that these injections are extremely expensive, they run about $5,000 a month.  MS is a cash cow for Big Pharma.  The makers of rebif pay your yearly deductible, if you are insured, just for being on their medicine.  I could go on and on... suffice to say, Big Pharma has a conflict of interest when it comes to MS patients and the mighty dollar. The meds are expensive, profitable and patients are on them for the rest of their lives. Is it any wonder that pharmaceutical companies help sponsor  MS clinics, etc? If a patient were to have his or her MS halted or cured, then the meds would no longer be needed. You won't learn about HSCT from your drug rep.

It was at this time that I also took a hard look at my diet.  I was determined to fight MS from all angles.  I wasn't sure how much it would help, after all I already followed a low fat diet and exercised regularly.  I read several books and spent countless hours on the internet.  One of the most interesting books I read, that I highly recommend, is Grain Brain by Dr. Perlmutter.  Talk about a paradigm shift in our way of thinking about cholesterol and low fat food products.  I now follow, and have since my diagnosis, a paleo/gluten free diet.  I feel so much better eating this way and I think my MS would be more active if I wasn't. Craig is not yet a convert and he tries to convince me, for example, that cave men did have nachos.

So, at this point I've tried  IV steroids, I've been on rebif, and I've changed my diet.  Unfortunately or fortunately, depending on how you look at it, I relapsed again with optic neuritis to my right eye.  MS was attacking my optic nerve.  The vision to my right eye has been drastically compromised and remains so today. When I hike with Craig and Hickory, my numbness increases but continuing to exercise and remain active is recommended for MS patients.  Cold makes me even worse than the traditional MS problem, heat. I have persistent ringing in my ears, weakness in my legs and this weird sensation that my left foot has stepped in water.  I had to fail two disease modifying medicines in order to be eligible for the treatment Dr. Burt was offering. The minute I got home from my second course of IV steroids, I contacted Dr. Burt and his team and was given an appt. to come for an evaluation in July of 2013.  I was also evaluated at Rush University, during that same trip, by a Neurologist, Dr Balabanov, who specializes in MS. The waiting room experience was depressing and instructive.....clearly my MS future would not be bright and the current therapeutic regimen would be ineffective.  I realize everyday that people receive worse diagnoses and as a navy veteran, I think about some of the horrific and life changing injuries that our troops sustain.  We all have to play the cards we are dealt.

After about five appeals plus an external board review, letters from Craig and Chad Pfefer, copies of articles and research, emotional conversations with faceless insurance executives and support from Northwestern..... well, we would have no coverage. The insurance company (for now) is willing to cover the meds for the duration of my life, but not willing to cover a procedure currently with an 85-93% success rate. The cost of the procedure pales in comparison to the average lifetime cost of MS and is equivalent to several years of the med.  It just makes no sense.  Anger really doesn't treat MS and bitterness never treats anything.  Many insurance companies now cover this procedure.

My goal is to educate everyone reading this, especially those in health care, that there is another option for the treatment of MS. As Dr. Burt and others publish more of their results, HSCT for MS will become more accepted and neurologists and insurance companies will have to take notice.  MS is a leading cause of disability in young people, but maybe it doesn't have to be.  Many countries offer this treatment, and I was accepted in Moscow and Tel Aviv if Chicago was not option.  I belong to two different groups on Facebook, one is for patients seeking more information about HSCT in Chicago with Dr. Burt (Dr. Richard K. Burt Stem Cell Study (HSCT) Chicago).  The other (Hematopioetic Stem Cell Transplant- MS & Autoimmune Diseases) is a broader group that focuses on facilities performing HSCT around the world.  These groups have provided me a wealth of information.  They are all former patients or soon to be patients about to have HSCT for MS or for a different autoimmune disease. I would encourage anyone interested in finding out if HSCT is for them to join these groups.  If, say,  twenty people read my blog,  I'd wager 3-4 of them will know someone who has the disease or who will get diagnosed.  Spread the word! Be your own health advocate and find a doctor who is willing to think outside the box.

I will now step off this soap box.  Today I'm thankful for my sunday school teacher that I had when I was 4 years old (yes, I said 4).   She has sent me a card every week since she heard I would be starting this treatment.  She reminds me that I have a good shepherd who walks with me beside still waters and through the valley of the shadow of death.  I'm so glad HE does because this sort of feels like a valley with a shadow.  This MS girl loves you Mrs. Tepfer!

~Veronica