12 Month Update

12 Month update:

Thank you to the thousands that have followed my progress for the past year.  I want to close the loop with an update 12 months post-transplant. This community is strong and growing and we rely on the knowledge and experience of others to shape our strategies in our collective attempt to find relief from the effects of MS and all other demyelinating and autoimmune diseases.

It is clear that 12 months past my "stem cell birthday" I have not achieved the desired results to either obtain some improvement in preexisting physical deficit or even to control progression of the disease. Dr. Richard Burt was forthright before treatment that my condition was not optimal for success based on his experience but he was willing to perform the transplant if I so desired. Like all of you on the front end of HSCT, I believed all I needed was an acceptance and I would definitely prove him wrong and achieve the success I sought. That didn't work out the way I planned.

Shortly after my arrival home from my on and off 8 weeks in Chicago I felt a new symptom. I had experienced L'hermittes sign intermittently since diagnosis but for the past few years I had been free of any serious pain from the electricity exploding down my legs straight to my toes. However, the first Saturday after I arrived home sitting at the kitchen table I moved my head in a normal direction and there it was painful electicity escaping my spinal cord and lighting up my right leg with intense pain. To say the least I was surprised.  I immediately embarked on a Google search to look for an answer.  Google actually said high dose chemotherapy could cause this symptom. The symptoms were present most days thereafter but usually dissipated by early afternoon. I experienced 6-8 per day and while inconvenient and painful they were not overwhelming. Unfortunately, 12 months later the L'hermittes occurs in my right leg every 6-8 steps. In the past month it has begun in my left leg as well. This too has started slow and intermittently and hopefully won't progress to the extent of my right leg.

To summarize my condition after one year, the rapid progression I have experienced since stopping Tysabri in May 2011 has not subsided. Except for a brief reprieve of symptoms and progression after HSCT due to eliminating my T and B lymphocyte count, my MS is more progressive than ever.

The intent of this final update to the HSCT blog is not a woe is me narrative. For sure my physical condition is poor and deteriorating rapidly. The poor strength in my legs have me full time using a cane and sometimes two and I can barely walk 15-20 feet before needing to rest. I was fitted earlier this week for a power wheelchair to get me to and from work and allow me to get around my office without my employees staring at me with disbelief and worrying for my safety from falling which I do a few times per week. A power chair will also allow me to get down to the gym to workout in my office building without suffering anxiety about not being able to walk out to my car to get home after a brief workout. 

The fatigue in general is difficult and effects walking, writing and holding items.  Dressing is a real chore especially buttons which usually take 5-10 minutes to complete one at a time.  MS progression has real impact on all personal relationships. My paralysis is happening too fast to even contemplate or understand so it hasn't really had a major impact on my emotional state. 

I read a lot these days favoring non-fiction. I just finished a great book called Abundance by Dr. Peter Diamandis. This piece is a fascinating description of the progress our civilization has made in the past 100 years particularly in areas of health, energy and poverty. This book gave me great strength to reinforce my strong belief in how very lucky I am to have had the life, love and relationships that God has blessed me with. Diamandis reports that each year almost 2 million children die due to diarrhea caused from contaminated drinking water. These children are mostly from sub-saharan Africa and I guarantee none of them have ever been to Disney World or enjoyed the privilege of a formal education and countless other blessings God has granted me.

If this all ends today (and I hope it doesn't) I have been luckier than 99.9% of all that came before me on God's green earth. This disease is bad and life altering but I am proud of my achievements and have enjoyed life more than most have even had the chance. I have 2 great kids, I am a CEO of a corporation and I finally bought a beautiful house.  I achieved the American dream!!!

Many are wondering how do I feel about HSCT for MS. Would I do it again? The answer is, I feel great that this option is available for so many suffering from MS and the dozens of other autoimmune diseases it helps. This treatment undoubtedly works for most if performed in the early stages of their disease. Many people I respect believe in their heart it's effective for more than those in the earlier stage of their disease but I'm not convinced. I was fortunate to be accepted and treated by a pioneer in this treatment and he's convinced it does not work for those in the progressive stages of MS. I believe him. I am sorry I followed my heart and not my head and received treatment for what I knew was progressive disease.

Having received Cytoxan during treatment has excluded me from a treatment clinical trial designed to treat my progressive disease and it also has made my return to Tysabri more risky to develop PML. I am NOT sorry I took an aggressive approach to managing my disease and if it worked I obviously would be writing a very different post, but it did not. The odds were significantly against me and at a minimum I should have pursued a full myeloablative protocol. There were good reasons why Dr. Burt and Chicago made sense for me, and the $200k Dr. Burt brought to Northwestern University hospital for my treatment is a very good reason for him to have accepted me.

So what's next? I continue to scour the Internet looking for emerging treatments. In my heart I KNOW within the next 10 years one or many treatments will be on the market to assist the body to develop oligodendrocyte progenitor cells and ultimately regrow myelin to cover the stripped nerves damaged through years of persistent attacks to my CNS. What number of my axons will still be firing to take advantage of these treatments is to be determined. I do all I can to keep myself in condition for the long haul. I don't drink or smoke and I have eaten more raw vegetables, seeds, nuts and fruits in the past year than I did in my first 42 years combined. 

I have tried many treatment modalities to manage my symptoms such as acupuncture, massage, trigger point therapy, rolfing, chiropractic care, applied kinesiology and sacro-cranial therapy.  I see a nutritionist to manage the 2 dozen vitamins and minerals I take each day. 

To all of you on the front end of your journey to and through HSCT I wish you the best.  Be smart and understand the science, treatment protocol differences and thoroughly evaluate the incredible impact this procedure will have on you and your family. 

To good health!

Kevin