Hold the front page! Tricep spotted! – 21 November 2018

T’is true! Apparently Scott the personal trainer saw a flicker of a tricep last week! So there is hope… I have been very good this week and done my exercises twice. I have even dusted off the kettle bells. What I have not done (still…) is joined the gym locally. I will though. Definitely. Next week. If nothing else I will be too ashamed to admit to Scott once again that I haven’t done it and as it is well documented, I am incapable of lying. So I will HAVE to join. And soon.

So, Ron the acupuncturist performed the eagerly anticipated Chinese mugwort burning procedure last week and… as far as I can tell… absolutely nothing has changed. It may take 2 sessions apparently. I didn’t see him today as I had to travel an hour in the opposite direction to see my neurologist for a check up. More about that later… I cannot really expand on what the treatment with Ron actually entailed as I could not see what was going on with it being on my back and all. But what I do know is that some needles were put in to the sacrum area and  then the mugwort (which looked a bit like a nicotine stained version of the stuff you find at the bottom of pockets which I call ‘smunk’) and then dollops of the mugwort were burned on (or near?) the needles and I had to say when it got too hot. To be honest I am just thankful that we didn’t set off the smoke alarms in the MS centre and be therefore responsible for the evacuation of lots of people with limited mobility… I have another appointment with Ron set up next Wednesday so fingers crossed. As they mostly are these days…

I saw my Neurologist today who I think is absolutely fab. I love her. She is brilliant – really down to earth and speaks to me like I am a human being. It has taken a while to find someone I understand and respect. I think she might be the 5th or 6th consultant I have seen over the years…

Good news first: There are “no new findings” from the physical exam since I last saw her in Feb. Sadly she didn’t mention that she had noticed an astonishing increase in upper body strength either so I’ll have to work harder on that!

Less good news: My lymphocyte (white blood cell) count is very low again and this time has dipped BELOW the tolerance level for the medication that I am on (Gilenya). A low lymphocyte count is fairly standard for people on this medication but mine has reached the level at which it may require me to come off it or decrease the dose. I was initially very concerned as I was unaware of any other suitable meds for me that do not cause nasty side effects (that I have not already tried and been taken off). Turns out there’s a couple of new kids on the block that sound interesting. Namely ocrelizumab (Ocrevus) and Cladribine. The Cladribine, which sounds as if it would be the preferred and most suitable option, has very strict eligibility criteria apparently which I am unlikely to be able to fulfil. Never simple is it…?

So I need another blood test in a couple of weeks and we will see where we go from there. With any luck, the lymphocyte count will sort itself out and we can carry on as normal. Fingers crossed…

I also need to look into a radio 4 programme that was (probably) on this week on the Today programme (or maybe another programme)  featuring information about a T cell treatment that my parents heard. More about that if I can find it. Might be something else to add to the list of things to try.