I’ve been discussing AHSCT and recovery with a lot of people in the last few days, probably because we have a long weekend here in Australia and I’m being a social butterfly with various different groups.
I’ll try to be as general as possible, but everything I state is coloured by my experiences of AHSCT, rehabilitation and recovery. I’ve had a very easy journey all the way, and while I’ve experienced everything people talk about, the impacts have been minor for me with the absolute bonus of many symptomatic improvements. However, I’ve also not had the seemingly miraculous recovery that some people experience, and it is unlikely I will ever get back to walking the Camino or kayaking grade 4 rivers.
The process and inflammation; the process of AHSCT , put simply, suppresses your immune system then starts the reboot process with your own cleansed up stem cells. Your immune system is not completely killed off ( that’s a much stronger type of chemo) and would recover on it’s own, however the stem cells speed up the process. Hence your immune system stops attacking your myelin sheath, stopping progression of the disease, this is particularly noticeable if you have the treatment while experiencing active inflammation and lesions. Moscow’s Dr Federenko believes that there is also often micro-inflammation within the cells, which is not visible on an MRI but impacts our CNS. He believes the treatment also addresses this inflammation, and I would concur as I was seeing steady deterioration with no active inflammation on an MRI.
Permanent damage; what the treatment does not do is repair scarred, damaged myelin sheath. That damage is done. So my MRI, approximately 16 months afterwards, shows no change at all despite numerous symptomatic improvements. See my comment above about micro-inflammation.
Rehabilitation; everything which follows here are my thoughts and experience. I strongly believe that everyone must do what works for them, and follow Dr Federeko’s advice to eat well, stay mentally healthy and do exercise they love but not to the point of exhaustion. The lesions are still there, but rehabilitation uses the principle of neuroplasticity to train our brains to find alternative pathways for the physical impairments we’re experiencing, and get those muscles to move properly. I’ve slowly started walking, swimming, kayaking, personal training and physiotherapy exercises, gradually building up my distances. I’m aware of people doing yoga, pilates, weight training … it’s what works for you.
Time scales; this is a long process. The roller coaster of recovery is very real, and I’ve seen myself go backwards a number of times now, then move forward again. Anecdotally, while a few people see amazing results and get back to their normal very quickly, many of us continue seeing gradual improvement 2-3 years after HSCT, and the progress can seen glacial at times. Many of us won’t ever get back to where we were say 5-10 years ago as the damage is just too bad, but are happy to take the symptomatic improvement experienced, and eternally grateful to have stopped progression.
Non-responders; I’m a responder, but this treatment doesn’t work for everyone. Why some don’t respond I really don’t know, this is a body of work for people in the medical field to investigate. However it’s a reality we need to be aware of.
I realised, re-reading this post, I’ve used images of butterflies. This was probably subconsciously my hope that I’ll emerge, whenever, transformed. Precisely who I’ll transform into, I don’t know, but after this process I will not be the same person I was 6 years ago when I walked the Camino.
My Longest Journey 