I finally got to meet my new neurologist yesterday and to find out why I won’t be seeing the old one. It turns out that my previous neurologist has left the NHS, in fact, he has left the country and has returned to Malta! My political mind wonders if this was Brexit related …I guess we’ll never know.
So my new neurologist was doing an additional catch up clinic for those of us left without a neurologist. He was a nice man but the whole appointment felt a bit rushed and pointless. He wants me on another DMT, but didn’t ask how I felt about that and he wasn’t aware of my letter enquiring about HSCT.
I asked him about HSCT and he looked a little flustered then explained that he thought it was likely helpful for some patients, but that we need more large group, long term clinic trials to be clear on who it might help. He also said that there was a number of drugs left for me to try, before considering anything more drastic.
He briefly mentioned “people who fundraise or sell their homes” to pay for treatment abroad (not realising that I am on my way to being one of them) and made some strange claim about those patients claiming to have improvements or to have halted their MS, but him not being convinced it was true! He felt some improvements were psychological and linked to the fact that people have invested in the treatment and believed it would work.
I wasn’t quite sure what he meant by that (intensive chemo, followed by stem cell transplant, having a placebo effect??) but decided not to discuss it further or tell him I am planning to have HSCT myself.
I felt he was a nice man and clearly believes that current drugs are good for his patients. It wasn’t until I was on my way home that I realised he didn’t ask me how I am, about new symptoms, or, in fact, my views or experience of anything at all!
So, that’s it, my hopes of accessing HSCT in the UK are now over. I am now one of those MSers who is diagnosed, shoved on drugs and seen once a year for a review (during which no one will actually ask how I am!).
I felt quite down about this last night but am ready to fight on today. Being an advocate for your own health is something we should all do, whatever our ailment. Knowledge is power. Find out what you need, find out how to get it and don’t give up 💪🏻
I now need to get back to fundraising (and possibly borrowing) with a vengeance. I think I’ll buy a lottery ticket for this weekend’s draw! 🤞🏻
On the plus side, the clinic in Moscow (as well as the one in Mexico) is infinitely more experienced in treating MS patients and has a much better safety record. I really will be in the hands of world experts and that feels good to me!
I also left the hospital armed with a bit of light reading!
