Okay, my boyfriend came home quite late last night from his ..
🕑 Added 2022-04-05 19:32:25 +0000 UTC
Okay, my boyfriend came home quite late last night from his work weekend. Well, he was actually back in town fairly early but after a really tough weekend of wining and dining their clients what his team really needed was to be taken out for drinks and food! Not grumpy about that at all…
Anyway! I have my notes.
The other day I had a FaceTime conversation with a neurologist that my aunt wanted me to speak to. He is apparently a bit of a big name in MS and was doing my aunt a huge favour by looking at me. He was in Malaga at the time but he usually works between two or three hospitals around the world.
I sent him all my notes from my doctor here as well as all the MRIs the hospital had on record for me. Apparently you can just go and get them, how cool is that?
Firstly he thinks I might have moved from relapsing remitting multiple sclerosis to secondary progressive multiple sclerosis. This is a deterioration but given that I was having lots of tiny relapses it is possible this will actually be better for me. Though it does mean I will progressively get worse that progression could be quite slow.
Next up he says it’s ridiculous that I have not been given Botox for my legs. He thinks that that will significantly help in my getting around as they will be easier to control. At the moment they have this habit of crossing over all the time and the Botox will stop that from happening. He said what is particularly odd about the fact I have not been given this is that it was the NHS who actually pioneered this treatment for people with MS in the first place, so it really should be readily available.
Next up he recommended a new medicine, Mavenclad, this is a series of injections one year apart that not only prevent further relapses but also help to repair some of the damage previous relapses have done. Unfortunately, looking at the requirements for the NHS, this is not a medication I can have as I won’t fit the criteria. But he’s going to write a letter recommending it anyway and we’ll see what happens. Paying for it is not really an option, as each treatment is £40,000. And as much as my boyfriend loves me I’m pretty sure he doesn’t love me that much haha.
Finally, and this one might cause a bit of a problem, he is putting in his letter that he would like me to go to a specialist friend of his in London for a second opinion. That one is going to upset my neurologist, so not looking forward to the reaction to that! But he is hoping that his friend can push for the alternative treatments if my neurologist still refuses.
That was my most recent neurology update, I hope you’re having a fabulous week and I will see you all very soon!
