Supermassive black hole

It's MRI time on Friday.

Or at least I hope it is, last time I wrote about an upcoming appointment it got cancelled, so I may do better to be quieter.

Anyway, it's due at least.

As medical investigations go, I don't mind an MRI. It's not painful and if I'm lucky I'll get to listen to my choice of songs.

I have an MRI CD which, thanks to repeated forays into the tube, has enabled me to choose a song list of tunes that can compete with the metallic bangs and crunches.

Some even complement it. Or so I like to think while I'm lying there, supine and VERY VERY, still.

(Just thought, will I have to wear a mask this time? That'll be a new one to accommodate under the face cage. Better check my letter.)

Sometimes I'm quite optimistic going into an MRI. This time I am not. I have clearly deteriorated over the past two years and I feel quite knocked by a suspected sensory relapse from a couple of weeks ago.

So I'm:

1/ anticipating new lesions

2/ wondering what this will mean for my next round of Cladribine (which I currently can't take anyway as my lymphocytes are rudely refusing to elevate); and 

3/ contemplating the horror of the scan showing black hole(s), which in MS signify irreversible damage.

Although I like to try and be chirpy about these things, I also need to be realistic.

To be honest, I think the best I can hope for from the experience this time round is a bit of a lie down.

:: Supermassive black hole by Muse

You spin me round (like a record)

Anyone gripped by the cliffhanger of my last post (neuro appt shenanigans) will be thrilled to know it had a positive outcome.

Well, positive-ish.

The face-to-face meeting got rescheduled and I saw my neuro for 30 minutes last week.

Thirty minutes in two-and-a-half years. Worth the wait.

After the usual comedy tests (noticeably worse results than last time) I discussed my permanent MS Hug which is now driving me insane.

So I got prescribed some new drugs to try and manage the pain of the hug. Hospital pharmacy didn't have them in stock, so an order was placed.

All good. Except I then developed the worst flare of the hug I've had in some time. Really painful, really exhausting, so much so that I can't sit upright and have had to bow out of work for the past seven days.

This situation is shit - suspect new lesion (lesions?) which may indicate Cladribine isn't working, it's incredibly painful and I'm having to deal with the self-employment panic of a) no pay and b) will they see this as the thin end of the wedge and just decide to get rid.

And the drugs prescribed? Did a bit of Googling at home so I knew how they'd work. During the course of which, I discovered they affect white blood cells.

Confirmed this with MS nurse so I can't bloody take them.

And this, despite the fact neuro and I had had a pretty lengthy discussion about battered lymphocytes and the importance of upping them to enable me to take Cladribine again. Currently they're not recovered enough to allow me to take the second year course.

All in all, not an overly positive experience. But! I have got an appointment through for an MRI. Which has also necessitated planning around my next raft of screening tests involving endless phone calls and near-begging to get a blood appt.

Good job I was forced into taking time off work to be able to deal with all the above, while strapping hot water bottles to my torso and back and lying on the floor.

Sometimes MS feels completely like spinning plates with one hand tied behind your back. In the dark.

:: You spin me round (like a record) by Dead or Alive