totally gobsmacked!

Everyday living
1

Afternoon friends.

Well i am absolutely chuffin gobsmacked! i cant believe what i`ve just been told!

You know I`ve been waiting for an appointment, following a referral to a top MS man in Leeds…after 13 years of being chuffed about by 13 neuros.

I rang Leeds today to ask if my referral had arrived. I had rung twice previously and was told it hadn`t arrived. So I had to do some chasing at Halifax hospital.

So today I was told the referral had arrived and that Dr Lily had discharged me back to my GP. What? I asked how could that be as I haven`t seen him yet? It was repeated and i was advised to speak to my GP.

WTF??? I feel as if I`ve been kicked in the stomach and the door at the end of my long journey, has been slammed firmly in my face!!!

Ive been ringing my GP, but cant get an answer as yet. i`ll keep trying.

I`ve also rung the MS nurse, but had to leave a message on her ansaphone. I dunno what to do next.

It looks like i will never know what is wrong with me. Got my wheelie and hoist etc, so just get on with ,living without the label I so desperately want.

I know I am not alone in that, as there are lots of us with huge ? on our heads.

Oh well, that`s that I guess.

luv Pollx

2

Aw, Poll, you wouldn’t look the same without that giant ? on top of your head

It sounds as though they’ve filed you under “too difficult for now”!

Lolli xx

3

Yeh, bummer, innit?

luv Pollx

4

Ooh, I just had a thought.

Maybe you could set up a “Neurologist’s Challenge” and send copies of your notes & scans to a whole load of eminent neurologists and challenge them to be the first to come up with a correct diagnosis. You never know, their pride might get the better of them!

Lolli xx

5

Mmm. but how will I know which is right, as I already believed the previous lot.

luv Pollx

6

Errrrrrr, pick the best looking one?

OK, end of bright idea!

Lolli xx

7

Oh Poll, this is obviously so frustrating for you, I am so sorry.

How could he discharge you without even seeing you? Beggars belief.

Is there anyone you can complain to like PALS for instance.

Keep trying your GP and MS nurse to see what suggestions or explanations

they may be able to come up with.

Try to keep your chin up Poll, we all understand.

Pam x

8

Aw, Poll, that’s very miserable - you must be fuming

Why don’t you apply to go on Embarrassing Bodies - they seem to sort out everything!! I quite like the idea of posing as a challenge to all neurologists out there - you could approach through a training hospital or something x

9

oh Poll!

Just wanted to say i’m sorry

I have no practical advice but i really feel for you. (((hugs)))

Teresa .x

10

So sorry Polly,

I do know people who have been waiting a while for dx but no one who has been messed around as much as you have, it reminds me of that saying, “doctors are men who prescribe medicenes of which they know little, to cure diseases of which they know less in human beings of whom that know nothing” (Voltaire), take care, love Wendyxx

11

And of course there are women doctors too!

12

Hi Poll,

I am so sorry to read your news. If that GP didn’t just press the wrong button when dealing with your case, then he should be reported! He must be completely heartless. Doesn’t he know that stress exacerbates MS? No, probably not if recent evidence is anything to go by. Can’t you get yourself a GP shaped voodoo doll?

Don’t loose heart, and keep on pestering the witless GP and MS nurse. We are all gunning for you.

Moira

13

Hi Poll, that’s terrible! Like Pam said, get in touch with PALS, and create merry hell xx

14

[quote=MS43]

Afternoon friends.

Well i am absolutely chuffin gobsmacked! i cant believe what i`ve just been told!

You know I`ve been waiting for an appointment, following a referral to a top MS man in Leeds…after 13 years of being chuffed about by 13 neuros.

I rang Leeds today to ask if my referral had arrived. I had rung twice previously and was told it hadn`t arrived. So I had to do some chasing at Halifax hospital.

So today I was told the referral had arrived and that Dr Lily had discharged me back to my GP. What? I asked how could that be as I haven`t seen him yet? It was repeated and i was advised to speak to my GP.

WTF??? I feel as if I`ve been kicked in the stomach and the door at the end of my long journey, has been slammed firmly in my face!!!

Ive been ringing my GP, but cant get an answer as yet. i`ll keep trying.

I`ve also rung the MS nurse, but had to leave a message on her ansaphone. I dunno what to do next.

It looks like i will never know what is wrong with me. Got my wheelie and hoist etc, so just get on with ,living without the label I so desperately want.

I know I am not alone in that, as there are lots of us with huge ? on our heads.

Oh well, that`s that I guess.

luv Pollx

I hope you don’t mind the intrusive question, but why is it that you have seen 13 neurologists and what explanation have you been given for the revised diagnoses, have these been based on new evidence or just difference of opinion on existing evidence. What was your original diagnosis based upon?

I can’t begin to understand what you must be going through. I’m just dealing with one diagnosis of RRMS, but my neurologist has asked if I would like a second opinion, because I keep asking if he is sure and what happens if there is another underlying cause for my symptoms, but having read your posts, I think it may just complicate matters.

Taz

15

Hi Poll, this is just not good enough, how can he do that without actually seeing you and giving you a examination. It beggars belief, I too am gobsmacked. You must get some answers don’t give up, I think I would be writing a complaint to someone not sure who though perhaps PALS ? Aww Poll I bet you are so fed up. Don’t know what else to say, take care Karen xxxx

16

How awful for you,but praps it’s time to go from GP to MP. If your MP is Labour or Lib Dem they might really like to have a swing at the NHS,but politics will doubtless become an issue as to whether anything is done to help you.

Good luck, Wb

17

Hi Poll

I’m totally gobsmacked for you as well. This is dreadful news as I know how long you’ve waited for this appointment. I find the whole thing incredible.

I just don’t know what to say to make it better for you ogther than I hope your GP has an explanation.

Much love, Mary

18

Dearest Poll,

No wonder you feel like you do. This isn’t good enough and it’s so unjust.

I really feel for you and am sending you big love and hugs

Trudie xx

19

I Pol, So sorry about this today. Hope you at least managed a good holiday. I suppose now it’s a wait to find out what’s in the letter to the gp? Chis x

20

WTF indeed!!! What a ridiculous situation

I hope your GP runs rampant getting an explanation (and a new appointment with any luck!).

((((((((((hugs))))))))))

Karen x