A.J. Walker

Multiple Sclerosis etc

First Nurse

It may be a month until I see my doctor but I at least have an appointment made with the MS Nurse tomorrow afternoon. Hopefully that will give me some answers and therefore some peace of mind. At the very least it will move me further along within the limbo I feel I'm in. Maybe even if it's just moving me from by the limbo entrance towards the limbo exit it will at least make me feel better.

Passing on the information on how I am now, as compared to a fortnight ago, will help their assessment I'm sure, but the main things for me is to get some information back: to see what I should and shouldn't be doing (if anything) - including exercise and work; are my current issues '
an episode' and are they likely to disappear as randomly as they arrived; what are the possible ways forward for treatment (if any); what, if anything, can be said on the expectancy for how things may change - and the speed of that; and, anything I need to be looking out for/reporting on.

The main changes over the last couple of weeks have been that the numbness/pins and needles have changed from being just my legs, from the waist down, to my torso - and to a lesser extent my hands and arms. I think the torso thing is largely felt through what they call the '
MS Hug'. It's a misnomer really as a hug is a nice thing. This is far from it. It's a permanent feeling of compression around parts of the torso, such that when lying down it feels like I've got a pile of heavy books sitting on my stomach. It really is quite disconcerting.

The other effect of the numbness is virtually my entire body (other than my face) feels freezing. Now, even though part of my body may feel warm to the touch, it feels very cold to me. It is the polar opposite of what I am used to. Usually I've more likely to have suffered from being warm. I've never been nesh.

Those are the negative changes. But from the positive side, the legs have not got worse. For the last eleven days I've been walking on average over 11k steps per day - and not felt any ill affects on my legs after the longer walks. I've also had no issues with my eyes. I'm a bit worried about the pins & needles now affecting my fingers a little; particularly with reference to playing the guitar in the first instance. But so far it has not got me any better or worse at the guitar than I was a month ago. Fingers crossed (while I can do that).

Roll on tomorrow afternoon.
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