From Russia with Test Results for HSCT

From Russia with Test Results for HSCT

What's Important Now

Regular readers of this column will know that I am convinced about the efficacy, reliability, and safety of Hematopoietic Stem Cell Transplantation (HSCT) as a treatment for MS. In fact, a few weeks ago, you learned through this column that my decision was made; HSCT was for me.

Dr. Denis Fedorenko and Anastasia Panchenko, his assistant, with me on the HSCT floor at the A.A. Maximov center in Moscow.

Knowing that there are other health conditions that might make the treatment impossible, or ill-advised, I spoke with Dr. Denis Fedorenko, head of HSCT therapy in Moscow, by phone and asked his opinion. He asked me to travel to Russia so he could oversee four days of tests before making a final assessment.

Dates were agreed, flights were booked, special assistance was arranged, and coach travel from my home to the airport was organized.

But that was not enough. I had to obtain a visa from the Russian Embassy before traveling; and as a British citizen living in Spain, that was no easy matter. But, eventually, it was granted and I was set to travel.

The plane touched down at Moscow’s Sheremetyevo International Airport close to 5.15 a.m. on Monday of last week, where a hospital car and driver were waiting. Learning that this was my first time in Russia, he whisked me on a diversion into the city itself, showing me Red Square, the Kremlin, and the Bolshoi Ballet. “And that,” he said, indicating a nondescript office block, “used to be the headquarters of the KGB.”

I didn’t ask about its current use.

Pre-HSCT tests

That day was the start of the most exhaustive and exhausting series of medical checks in my entire life. They included MRI scans of my brain and spine, as well as my chest and abdomen, and ultrasound scans of the veins in my legs.

The New Life pin
The New Life pin given by the clinic to all HSCT patients after transplant. Dr. Fedorenko presented one to me for my support of the therapy.

Decision day was Thursday, when Dr. Fedorenko came to my room with all the results. The key findings were:

  • I have progressive MS, but all lesions in both my brain and spine are inactive
  • My prognosis, according to Dr. Fedorenko, is that the MS is unlikely to progress and, if it does, it will only do so slowly
  • My heart (I already knew had an irregular heartbeat, or atrial fibrillation) is totally OK on one side and, overall, pumps 10 percent less blood than it should
  • My lungs operate at 90 percent capacity
  • My vitamin D level is below the usual scale

Based on the fact that my MS is inactive and that chemotherapy could pose a threat to my heart, Dr. Fedorenko took the totally understandable decision that HSCT is not for me.

“In your case, with the MS not progressing, the benefits of the treatment do not outweigh the risks to your heart,” he said.

In short, as MS progression is currently stalled with inactive lesions, for which I am grateful and in a happy place, I don’t need HSCT.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.


  1. Cynthia says:

    In Progressive MS active lesions happen far less than in MS, it is one of the signatures of progressive disease. This does not mean stable.

    Further Autologous HSCT (complete immunoablation) has many risks both short term and long term. Is cardio one? You betcha.

    Without going into a dissertation of what is seemingly known about the progressive disease course your key to making gains are twofold:

    1. Neuroplasticity
    2. Growth of new neurons

    One of the patients in our now 17 person local support group has been PPMS for 12 years. Not ambulatory for 9 of them. As of last week he took 3 steps (assisted).

    Hopefully saturday he doubles that is our goal.

    He has done a WHOLE lot of work over the past 3-4 months time for three little steps. But know what, by this time next year if he continues to progress as he has, he’ll be walking.

    What did we do?

    1. He went for a battery of dietary tests including leaky gut syndrome, food sensitivities, various vitamin and compound levels. Balanced that.

    2. Change of lifestyle. No more than 1 hour of TV as the time is better spent making gains and the mono-focus of TV is not neurologically good, for anyone in fact.

    3. My fiance’ has spoken twice to the group about computer multi-processing concepts and how to apply them to our brains, a bio computer that is the most powerful multi-processing computer known to man but seldom used that way. The non-usage of this results in stress on that system and subsequent cascades of neural networks (which he worked on for many years in computers)

    4. Weight lifting (using his arms) three times daily. After 4 months leg assisted weight lifting.

    5. Motor assisted leg movement. One of the husbands of one of our RRMS women took a motion therapy device and mated a rotisserrie motor to it with variable speed. While he is sitting it WALKS his legs and feet. 45 minutes daily while he sits back, listens to classical music (no vocals) and concentrates his thoughts on helping the DEVICE help him walk.

    6. One baby aspirin a day.

    7. Glutathione supplementation, Vit D1,D2,D3 supplementation and a multivitamin

    8. Therapies targeting cognitive multiprocessing (in his case, music therapy). He was spending hours everyday online, 2-4. Now limited, 1 hour maximum. Again, Internet is like TV mono-focused brain usage. He he purchased the as seen on TV Keith Urban read, play and now learning to try compose. Music requires multiprocessing hence its broad application in stroke.

    9. Mindfullness – The brain is a computer capable of self-modifying code (per se). When he engages in ALL therapies, after completion he takes 10-15 minutes of mental imagery “Seeing” the results. Aka: Visioning new neuron birthing, visioning walking, associating aspects of his brain to the real world and “seeing” reparations.

    10. LIVE interactions with people NOT phone, not TV, not Internet at least twice weekly. One is at the support group weekly or bi-weekly. But MANDATED. Twice a week MUST GET OUT and SOCIALIZE.


    First, its simply a good thing towards quality of life. On the more phsyiological aspect… Our brains are DESIGNED to interact with one another and they are NOT DESIGNED to interact via things such as social media, again, mono (meaning ONE) focused inputs or outputs. Mood of the BRAIN fosters DEVELOPMENT of the brain. Depression, all the “negatives” of mood/mindfull state work AGAINST new neuron birthing, multi-processing, multi-state function.

    Contrary to what most of the MS community does online in peer to peer support in trying help one another over humps that is placebo based. Its MOMENTARY and NOT SUSTAINED. Turns into a “addiction like state” and NOT a SUSTAINABLE EMOTIONAL STATE. VERY VERY VERY IMPORTANT.

    The KEY is to get that SUSTAINED POSITIVE EMOTIONAL STATE as THAT is a large part of the FOUNDATION to begin MAKE GAINS as noted in ways above and more than likely hundreds more.

    View it like Christ said. “Everyone then who hears these words of mine and does them will be like a wise man who built his house on the rock. And the rain fell, and the floods came, and the winds blew and beat on that house, but it did not fall, because it had been founded on the rock. And everyone who hears these words of mine and does not do them will be like a foolish man who built his house on the sand. And the rain fell, and the floods came, and the winds blew and beat against that house, and it fell, and great was the fall of it.”

    11. Spirituality. We are NOT simply chemical compounds. We are electrical, we have spirit and are alive. That which makes you is not simply chemicals and electricity. Again, this too is FOUNDATIONAL towards wellness and quality of life.

    “The two most important days of your life is the day you were born and the day you find out why” – Mark Twain

    You can NEVER EVER find number two in that statement without #11 above.

    Spiritual HEALING is NOT what you see in TV evangelical. But, it is QUITE REAL as has been shown countless times in REAL medical practice. aka: MIND <—- SEE THAT, BODY <—- SEE THAT? SOUL <—- SEE THIS!!!

    ALL THREE. If ANY of the three are not in the mix, all the others FAIL.


    • Tim Bossie says:

      Hi Cynthia! Thank you for the in-depth comment and giving us a glimpse of this fascinating study. Very interesting to see how real social interactions and the limiting of television played a major role in this person’s improvements. I guess that shows you that most of what is on TV isn’t all that good for us. 🙂

  2. Steve Mackay says:

    My Ms is also inactive but still a pain in the neck. I started my journey back in 1978. My last MRI showed no change compared to ten years ago. Maybe the attacking cells die as we age. I am SPMS. Hopeful that some restoring drugs come out. I guess a reboot of immune system is pointless for me also. I am 60.

  3. Rick T says:

    Congrats. I am also curious if you could possibly be in Secondary Progressive MS. No active lesions, but at various rates over time you may experience additional declines.
    Please keep us all updated. Thanks in advance.

  4. Joan Quilter says:

    At times, my daughter entertained the idea about HSCT, and we , even, contacted Northwestern Univ. last year about applying for it. However, the thought of her getting chemo was a bit daunting, since she is severely disabled now. At age 39, after almost 20 years of MS (in spite of taking MS drugs, trying almost everything,etc.), she has lost most of her vision, speech, and use of her limbs. She, also, has tremors. I remember 3 years ago, my son took her to Germany for stem cells (from her own bone marrow); this was done w/o any chemo, of course, and the result was zero. Being bedridden now (at times, she can sit in a chair), it would be extremely difficult to move her in order to travel anywhere. Does anyone know of anyone with MS this disabled who, actually, had HSCT with chemo, and survived?

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