30th May

First of all, for anyone just joining this blog, the beginning of this journey is at the bottom.  I expect you all know that, but just in case there are people as novice as I am at using a blog, I thought I would mention it.  And of course it would help if I had begun each post with a date. Which I will now do.  Sorry. But I hope you can make sense of what has come before.

And just to confuse matters further I am going to fast forward with my MS progress by updating you with what happened on Friday when I went up to UCHL for an appointment that I had been notified of three weeks ago but I wasn’t sure what it was about.   It could have been purely for a blood test which seemed a bit bonkers going all the way to St Pancras for them to extract a syringe or two full of blood.

So, in a nutshell, after a year of fluffing about, I have finally seen a specialist (who I have been handed on to by the Professor I saw in Queen Square)  who I have connected with and although he hasn’t said anything different to the other two;  it was the way he said it.  It is primary progressive MS although described by the consultant as mild.  In terms of DMT (disease modifying therapy) stuff, I have been assured I am not “ripe” enough to merit it, and my next appointment will be in a year.  I did suggest 6 months and he (Dr Brownlee) countered that by saying it is is better to allow a bit longer between scans and assessments because of the way the disease progresses.  I have to admit I am not entirely sure about that approach but I have to have faith in somebody along the line.   I took heart from his remark that it could now progress very, very slowly but there is no foundation for him to say that.  Or the opposite could happen.  Quite simply, they don’t know.  But I feel much calmer having seen him.  He was the first doctor who gave me time:  The first who talked to me as if I wasn’t a fraudster or an ignoramus.

In fact, to celebrate – I went shopping!

But I have more to add regarding pain relief, Monty, Claudia and those blinking eels.