Tuesday, 30 August 2016

Round 2 week 15 Neurologist and MS nurse on Wednesday

Another week in remission land and all is good. The sun is shining, we've bought Winston Dog a new toy call which rolls around and makes giggling noises - it's hilarious to watch, but if his dribbling skills get better I'm thinking of sending a video to the England Manager and suggesting Winston for a defensive midfielder role on the team.
The 3 day weekend was a lovely welcome break from everything, with far too much time on my hands I've become a blonde again for the rest of the summer (I give it 2 root touch ups before that novelty wears off again)
We've booked our car for Portugal and parking for the airport, still waiting for a response on Puppy Dog care, but I'm not overly concerned about that yet (give me another 48 hours and I'll be in meltdown).
Tomorrow is my bi-annual appointment with the Lovely Margaret, my MS nurse followed immediately by my bi-annual appointment with the Lovely Dr C my Neurologist. As I keep them both up to date monthly I'm expecting these to be pretty celebratory aren't you doing well kind of affairs.
I wonder if Dr C will be utilising the 'pokey-stick' to test what my sensations are doing this time ? If so there will be much 'ouching' since my feeling is normal everywhere these days. I will be enquiring about when the next MRI is due but that will probably be the responsibility of my new Neurologist.


It is finally time for them to hand me over to the Berkshire Health Authority which means that I will be needed a new Neurologist and a new MS nurse. This freaks me out more than anything else right now. I hope that they know people who are lovely and happy to work in my madcap way. I hope I'm less of an overhead because I'm so proactive. I send them my own blood results in the nice easy to read table. I don't need home visits, I'm happy to come and see them, and if that's while I buy lunch then all the more civilised.
For the new Neurologist, I really would prefer another true MS specialist rather than a general neurologist, preferably one who is Lemtrada friendly and open to new treatments and being brutal to MS rather than 'babying' it and me.
Now I've typed that out I feel quiet nervous about losing them, I don't want to, I'd like to keep them up to date on how I'm going even if I 'must' go to someone new .... what if they don't want a madcap spreadsheet wielding nutcase who is happy to do stuff by text message and email or over coffee? What if they just don't like me and want to be totally formal with everything? Or they've heard about this blog and regard me as a trouble maker stirring people up to want Lemtrada ...
Oh Dear
Wine
Please
13:08 - well it's not exactly Any Winehouse / Paul Gascoigne / George Best territory, but I've psyched myself out and started wanting a glass of wine at lunchtime ..... on a bright note it's closer to dinner time than breakfast time so that has to be a good thing right ?
Another update tomorrow after I've seen the ladies to let everyone know how it went xx

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