A year ago, I was in Russia, going through testing prior to commencement of my treatment. I’ve found myself looking back, and reflecting, way more than I’d anticipated. Sure, I thought I’d celebrate on my stem cell birthday, but I hadn’t realised how much time I’d spend thinking about the decision, the time in Russia, the year of recovery since. This has been a life changing time, maybe not in obvious ways as my life looks pretty similar now from an external view point, but there has been a lot of time for thinking.
Technical stuff – when I went to Moscow I had no active lesions showing on the MRI, and I’d been advised that the treatment wouldn’t work for this reason. However, and I’ve mentioned this before, Dr Federenko has a theory that we often have many micro-lesions in our brains along the myelin sheath, impacting the transmission of signals along the nerves. These invisible lesions can cause a continual worsening of symptoms, which is exactly what I was experiencing, without the indicators which show up on an MRI.
The treatment during AHSCT kills off our immune system ( that’s what the chemo is for), hence the irritation causing the flaring of the micro lesions is suppressed. Therefore the gradual deterioration stops. All the ongoing symptoms I was experiencing, which my neurologist told me were permanent and could only get worse, started to decrease and still continue to decrease.
Physical symptoms – I’d forgotten about this and was only reminded by looking back at the blog post I did a year ago. After a morning of walking round Moscow sightseeing, on my way back to the hotel, my ankle gave way completely. This was not a sprain or twist in any way, it was as if my brain couldn’t tell the ankle what to do. I managed to stumble my way back to the hotel with great difficulty, for say 200m. On getting cooler, rested, and massaging the ankle, the ability to move it came back. However, had that deterioration become permanent, I would have needed walking aides 100% of the time and would have gone from an EDSS of 3.5 to 6 immediately.
This symptom never came back after the treatment, but is so indicative of inflammation impacting the ability of the nerves to conduct signals around my body. From my understanding, the treatment reduced the inflammation prior to scarring of the myelin sheath, so in that specific case, I have been left with no permanent damage. Anecdotally, this could explain some of the amazing successes I hear of, when people with highly active disease get their treatment and the inflammation is suppressed prior to scarring of the myelin sheath.
Yes, possibly I should have gone to Russia earlier. I wasn’t ready a few years ago, the risk equation didn’t work, however I am still so thankful I went exactly when I did go. Time was running out for me.
2 thoughts on “Reflections”
Thank you for writing this, I was diagnosed 5 months ago and as the disease is progressing rapidly (I am now 70 years old) I have booked to go to Moscow. After reading your story I know I àm doing the right thing.
The care you will receive in Moscow is amazing. Thinking of you xx