Well, as many of you already know, tomorrow I see neuro number 14 in as many years. In my early days of investigations, I had 6 monthly appointments…I`m telling you this incase anyone is wondering how I clocked up so many neuros!
I feel tomorrows meet, with yet another neuro, is more important and yet daunting than any Ive had before.
After having gone through many changes of diagnoses and now having one of spastic paraparesis, cause unknown, I feel I`ve got to get it right…the questions I ask, the answers I give, the whole damn thing.
Having been turned away by a top neuro in Leeds, with just advice given to my local neuro dept, I cant help feeling ive been black listed, due to me saying I felt discontented at not having a firm diagnosis, after all this time.
Yes, I know, some of you will tell me i am being somewhat paranoid with this feeling. its fine when we tell each other here how we feel, but I doubt thats the case when talking to the medical profession.
So, do you have any advice, or ideas for questions I should be asking?
Well Poll, I can’t give you any advice, I’m sorry. I am pretty damn sure you will have already covered this ground 14 times and more but I can wish you the very best of luck tomorrow and I really do hope you come home with a diagnosis.
I am sure youv’e asked so many questions previously and as i’m quite new to this forum and still awaiting dx, I don’t think I could give you any advice that i’m sure you have not had/used before. I just had to say, Good Luck and loads of best wishes for your appointment. No one deserves to be left feeling ‘untreated’, and not in control of their life, you deserve the answers and I hope you get them very soon. Jo.
Hi Poll - all the very best for your appointment I hope you get the answers that you need. You have just been through so much. I totally understand your concern with thinking that you might being blacklisted. BUT LET ME ASSURE YOU I VERY MUCH BOUBT THIS IS THE CASE SO DON’T WORRY. You could ask to see a copy of your medical records if you have not done this Already. Myself I am fearfully of being labelled a trouble maker. Perhaps in my notes it’s says TM. Seriously really really hope you appointment goes well Hugs Min xx
I may have missed a few plot twists and turns. Is this the appointment at which you finally get to find out whether you are going to be offered genetic testing (which, IMO, they should have done ages ago)?
I’m still not sure whether you will get answers tomorrow, and I hope you won’t be too disappointed if you don’t, but I think all you can do is try to go with an open mind - give him the benefit of the doubt, unless or until he gives you any cause not to, and try not to blame him for mistakes or disappointments caused by his predecessors.
As I have found out this week, they are NOT all the same, and seeing a new person can make a difference to how well we feel it goes. I wouldn’t even say I have a problem with my regular neuro (certainly not been left in limbo for 13/14 years like you). But even he is not without his faults, and has let me come away feeling a bit frustrated and unheard, on more than one occasion.
By chance, I saw someone different this week, and didn’t feel I was being pressed to cut down drugs that were helping, or that non-neurological symptoms were being dismissed as unrelated. True, she still wasn’t that interested in the non-neuro stuff, but she didn’t react as if there was no way that could happen. So they do have minds of their own, and don’t necessarily go along with whatever the last person said.
Hi Tina, as always, I knew Id get a helpful reply from you....in fact Ive been on the lookout for it…and yes, it has helped.
i mean the way youve advised me not to blame tomorrows neuro for the failings if previous ones…good point that!
I believe the main reason for tomorrow`s appt is to give me and explain the LP results. Plus if it is normal and this doc feels no further testing for MS is warranted, we may talk genetic testing.
I think Im going to have to go for it. As much as I really dont want HSP (you know why), Ill have to accept whatever life chucks at me and get on with it.
My 2 daughters know all about HSP, should it visit them or their children. I hope and pray it doesn`t, but que sera,sera, eh?
Hi Poll I hope it goes well for you tomorrow. Don’t be afraid to ask any questions you want. Go in with a positive frame of mind, and give this neuro the benefit of the doubt, be polite (not that I’m suggesting you wouldn’t be), I wouldn’t dwell on the past either, that’s been and gone, and the neuro you are seeing tomorrow might not even have been a neuro when you started on this journey. As for testing for hsp, well only you can decide. Testing won’t change whether you have it or not, I will just let you know. Best of luck and let us know how it goes. Cheryl:-)
Hi Poll, best of luck tomorrow hon. I’ll be thinking of you.
Re ‘blacklisted’… I don’t actually think it is paranoia. I think I told you once before how I had changed neuro’s after getting a ‘benign ppms’ dx… and new neuro was very nice on first visit. On second visit he was very unfriendly and I immediatly thought ‘he’s spoken to the other neuro’. I’m sure I was right!
Luckily even neuro’s can forget things in time and he’s now ok with me (esp since it’s obvious there is nothing ‘benign’ about my ppms).
However… if I were you I think I would tell it how it is. Say how frustrating it’s been going to 14 neuro’s. Say you feel as if you’ve been blacklisted. Say how maddening it is when other people get their dx and you are still in limbo. Just tell it how it is and how you just want to know what the hell it is!
Wish I lived closer so we could meet at hospital… but I’ll be with you in spririt.
Goodluck Poll!!! Hope you get an answer, youve waited so long!!! Youve shown great bravery & strength despite being passed from pillar to post!! Just ask them 1 question, why has it took so long! Really think you deserve an answer!! God bless will be thinking of you Tracey xx
Best of luck Pol. And don’t forget, as Jen has said, we’ll be holding your hand. Deep breaths now hun (sorry, that was for me, was tearing up, feel like it’s me going!).