Evening all!
Been for my annual visit to my neuro today. It’s a lady doc and she always looks dour and that first moment when I enter her office is very uncomfortable for me. I’ve found this with other docs and wonder where their bedside manner went… presuming they ever had one. It isn’t something that can be taught, I guess.
Anyroad, I had 3 main things to discuss with her.
The first was my recent URO appointment and the discussion we had about botox, which I decided to keep on the back burner. And about my new oxybutynin patches, which I’m doing OK with. Anyone suffering the awful dry mouth/sore throat that they cause, might want to see if you can have patches instead, as they seem OK up to press!
Then she asked how I’m doing without baclofen, which I weaned myself off quite a while ago now. I told her I get some stiffness and judders when my carers are turning me or faffing with me. It’s when we say 'Elvis is in the building ’ . I’m sure those similarly affected know what I mean, eh?
The last thing I wanted to talk about was something I have thought about a lot, with differing feelings, over the last 7 years!!!
Ever since my diagnosis was changed from PPMS to HSP, I’ve read about genetic testing. Should I? Dare I? They sometimes come back with a false negative, as there are now over 70 types of HSP, but they can only test for a few.
So, the doc didn’t sway me either way, so I went for it. A blood sample was taken and the request was made!
I feel funny, kind of excited, but not really…I dunno…it’ll take several weeks and is done in Leeds.
You know there’s still a bit of me that wonders if I do have PPMS.
Minefield innit? What do you think?
Pollx