Three months of silence. I waited to see whether it’s ‘real’ or whether it’s a placebo that is playing tricks on my mind. So let’s take stock of the what’s so: Tomorrow I celebrate 12 months post transplantation, and celebrate it is. I will start from the bottom-line and work my way up:
• I have lived with MS for 14 year so take my word for it; I know what it feels like to have MS and I can tell when the disease is progressing – it sure doesn’t feel that way now! Call it ‘cure’ if you wish, and if you don’t, don’t, but; apart for the accumulated MS disability (attributed to 14 years of MS), I feel like a normal individual who is recovering from chemotherapy.
• Last week my Neurologist and I reviewed the results of my head and spinal cord MRI. Spinal cord is 100% clean, no sign of any disease activity! The brain MRI only reveals an old ‘black hole’ and 2 other old lesions. All the pre HSCT signs of active disease are all but gone.
• On June 11 my vaccination program kicks off to ‘teach my naïve immune system how to defend me against polio and the likes.
12 months post HSCT I can now say that, for the most part, the residual effects of the high dose chemo have faded and that I’m nearly back to the pre HSCT baseline + some improvements. In fact, the improvements I reported in my 9-month report have all persisted. Recall:
• “From a Mental and Cognitive point of view both my Stamina and Agility are unmistakably and unquestionably right back to where they were 10 years ago; an overall sense of well-being and transparency that I haven’t experienced in years. Hardly any mood swings anymore, short-term memory entirely restored and my cognitive acuity & speed are fully back on track. Surprisingly for me, my mental and cognitive capacities no longer diminish coincident with physical fatigue. ONE NEWS UPDATE: LAST WEEK I WAS OFFERED THE OPPORTUNITY TO JOIN A REPUTABLE CONSULTANCY FIRM. I HAVE ACCEPTED THE OFFER EFFECTIVE JUNE 15.
• From a Physical point of view I am still somewhat weak (ALTHOUGH LESS SO AS THE RESIDUAL CHEMO EFFECTS DIMINISH). Never-the-less, there are a few good things going on that are worth reporting:
- Heat intolerance (or tolerance if you like) is entirely 100% resolved
- Vertigo 90% resolved (NOW 100%)
- Bowel movement issues entirely resolved
- Urgency 70% resolved (UP TO ABOUT 80%)
- Optic-neuritis 80% resolved
- Spasms in right leg 90% resolved (NOW 100%)
- Purple foot 80% resolved (NOW NEARLY 100%)
- I sleep well and wake up fresher as compared to pre-HSCT
- 16 hour days with no need for a nap
- Walking range back to pre HSCT (700 meters) (NOW UP TO 1 KILOMETER) without walking aids.
- Speech and swallowing entirely restored
- I can write a whole sentence again and I find it easier to button my shirt
- Finally, I regularly (NOW DAILY) sport on my home trainer and I am (STILL) making impressive progress.”
Finally, some post HSCT reflections:
For people with more advanced MS and accumulated neural damage, HSCT is by no means a quick fix. Neural and motor functions will, at best, slowly and only partially recover. At worst, over time you will only notice that disease and disability progression have been halted. So bottom line, the key words are SLOW, PARTIAL and STOPPING PROGRESSION. Any thing beyond this should not be expected and should be regarded as a bonus; else you setting yourself up for a serious disillusion. Btw, I have been told that such a 'bonus' is not likely to be granted in the first year post HSCT.
Also, do not underestimate the residual effects of chemo. It is not nearly as dangerous as many may believe, but it is by no means a benign procedure and it will certainly put your patients and resilience to the test.
Am I happy I did this? Much more; I am grateful, for every breath I take, for every day I live! For as long as it lasts, MS no longer terrorizes me, and it no longer progressively robs me of my dignity.
Happy to take any questions. Yours, Asher