Tuesday 24 March 2015




I have been asked more than once if I regret doing the procedure.  My answer is always no.  My only regret is not doing it sooner, which would have given me a greater probability of reversing some (or all) of the damage to my body caused by MS,  How much sooner?  The day after I was diagnosed in 2009.

Clinical data indicates that some (approximately 20-30%, I think) patients with MS do not respond to HSCT treatment.  Comparing how I feel now versus how I felt prior to HSCT, I believe that I have responded to treatment.  However, I am not sure what the future holds for me regarding MS.  Has the disease been killed off entirely or only partially?  Will the benefits that I have seen remain for 6 months / 1 year / 5 years / the rest of my life, or will MS return at some point?

Options I have are (1) doing the treatment again, at a facility with a higher intensity chemotherapy regimen if possible (with the aim of killing off the disease entirely), (2) getting what is called a chemotherapy "top-up", and (3) continue to exercise and do not seek further treatment.  I have read that a patient should wait at least one year before deciding, since the first year after treatment is very up-and-down - MS symptoms can come and go, and may affect your body more so than they did prior to treatment (temporary worsening of symptoms).  Therefore, judgement if the procedure was successful in halting disease progression during that time is difficult.

I have read that there is no better clinically proven treatment option for primary progressive MS (and all other forms of MS) than HSCT.  After at least one year following treatment, I will consider how I am feeling, discuss everything with my family, and then decide if I will seek additional treatment or not.

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