Neuro appointment today

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?


hi poll

it would be interesting to know but unlikely to be life changing.

one shitty disease or a different one?

i know what you mean about the attitudes of some doctors.

we had a brilliant gp at our surgery and he saw me through my diagnosis but then he left to be a senior partner in a different town.

bring back doctor chan.

clone him so we can all have one.

love you poll, my warrior queen.

carole x

Well I still complain like hell about my GP emigrating to Australia, without a by your leave, she didn’t ask what I felt about being abandoned to the so called ‘care’ of the remaining doctors!!

I kind of want Dr Jones to have a happy life in Aus, but I want her back too.

And I think our Poll is being incredibly brave about trying to get a definitive answer. It won’t help if she gets a false negative, but you’ve got to at least try. Otherwise it’s like those poor souls being left in limbo land with regard to MS diagnosis.

Love Sue xx

Hi Poll,

You have given so much support and comfort to others over the years, I’m delighted you’re getting some attention for a change.

Keep charioteering my Queen.


Hi Poll,

You’ve given so much comfort to people over the years, I’m delighted you are getting some attention for a change

Keep on charioteering my Queen!


Oh that`s nice of you all to say such kind things to me and call me your Queen!


1 Like

Hi Polly,well i hope after all this time you will get an answer to what you have,i know it wont change things but at least it will make things clearer for you,

You are always so upbeat and funny you really should think about writing the book we urged you to do a while ago you have a great way with words .

take care Barbara xx

At least it may give you answers. Agree with all the above. Sorry can’t say more vey difficult. Anne X