totally gobsmacked!

So sorry to hear your news Poll, it’s just an idea but why don’t you write to your MP and explain the plight you find yourself in. Many years ago I was in a similar position, I had been waiting for 2 years just to get an appt’ to see a consultant. At that time my MP was Anne Widdecombe, she was brilliant and got things moving for me. Shortly afterwards an appt’ came through and then that’s when I was dx with Ankylosing Spondylitis. At least you could mention it’s all a bit silly to give you a MS nurse if they can’t give you a definate dx.

Sending love and ((((((HUGS)))))) Give it a try, you never know!!!

Janet

x

Oh Poll, What a nightmare these people are. I can’t believe it. I hope you get somewhere with your GP. Thinking of you, Teresa xx

Sorry to hear that Poll you have my sympathy (((hugs)))

sonia x

Poll, I can understand what you are feeling right now as I’ve been going through a similar situation for fourteen years.

Did a neuro refer you to the ms specialist for a second opinion ?

In your situation I would ask to be referred to a neuro geneticist. Your neuro disgnosed you with HSP at one time and there are blood tests to help diagnosis this. I’m sure you said you didn’t have hereditary testing. There is also a condition called primary lateral sclerosis which doesn’t show up on any tests.

Both HSP and PLS are often diagnosed by the same neuro seeing you over a period of four to five years. I’m with a neuro geneticist and I was told last year he would get me as near to a diagnosis as possible as fourteen years is way too long.

Saying that I had to contact the secretary as I hadn’t had a follow up appointment. I’ve now got one fourteen months later.

Let us know what your GP says.

Jacqui x

A discharge without seeing you?

Sounds like a clear case for PALS to deal with!

If you want to go down that road, you might need to consider if you go to the hospital PALS, or to your PCT PALS ('cos it might be something in what your GP wrote in his/her referral letter). I think that I would start with the hospital PALS, though, but read on … .

Dont forget that you should have had a copy of the letter from consultant to GP (not to have been sent one is a breach of the NHS Charter), and you have an absolute right to go to the GP’s surgery and see the letter that they had, within 42 days, without charge (and that’s in the NHS Charter as well). If you go down this road, it might show up where the difficulty is really coming from

If you really want to poke a stick into the ants nest, apart from Wb’s suggetsion of your MP, you could also try a local councillor, but do not forget your local paper. It just depends on what you want to stir up. And after 13 years, I would want to stir up quite a lot.

Geoff

Interesting thought…but that programme is only interested if they can cure you, to show how wonderful they are! Plus they always seem to want to show rude bits of folk…not doing that! LOL

luv Polllx

Poll I’m absolutely gobsmacked! I can’t believe they’ve done this to you. I can only think that a neuro that you’ve seen before has got pis*ed off that you wanted referal to the Leeds neuro and has contacted him.

The reason I say this is because I changed neuro a couple of years ago (you might remember that I got a ‘benign ppms’ dx which really pis*ed me off so I went to another neuro… different hospital). First time I went he was really nice and supportive… second time (once he had got my notes for first neuro) he wasn’t so friendly and asked me over and over why I had changed neuro. I just knew that he had spoken to the first neuro! (anyway he’s ok with me now) but I’m wondering if you’ve been caught in a similar ‘network’ where they sort of stick together like ‘old boy’s club’???

I’m also confused about why I didn’t see this post earlier?? Says it was posted on 22nd but I come on every day and didn’t see it. In fact was wondering why I hadn’t seen you on here for last few days (and I just got your PM… was that sent earlier?)

Anyway that’s very incidental to your terrible news. I’m so sorry Poll. Flabergasted actually. I can only suggest you do the complaint through PALS like Dr. Geof suggested.

Wishing you well my friend and thinking of you,

Pat x

[quote=“Anonymous”]

Hi Taz, to answer your questions re my dx/13 neuros.

Here`s a quick run down of how I got to the place i am now;

1999

saw private neuro who said there is something very wrong with your left leg and there are signs of it in the right leg. I dont know what it is, but it wont get better. My advice is to think about retiring from work!

2000 - 2003

saw different neuros every 6 months and PPMS was suspected, due to clinical presentation, as no tests proved MS ie Several MRIs/LP/EMG etc

2003

I was given 95% diagnosis of PPMS

2010

Dr Ghaus…I was told it wasn`t MS, but HSP…a rare genetic disorder which mimics MS. saw him again in same year. My world was torn inside out, as HSP has a 50% chance of my children developing it. I felt sick to my stomach.

2011

Dr Mahmood…I was shown 2008 MRI, which had 3 blobs in cervical sine area and he said `This looks like MS to me. Your previous neuro has missed them. I will order EMG and consider another MRI.

The EMG showed no abnormalities. I had no other tests.

2012

Dr Mir…told it isn`t MS, but SP - cause unknown…referred to Dr Lily.

There you have it, love.

Why are you unsure of your RRMS diagnosis?

luv Pollx

Hi Pat, my GP is trying to find out what`s gone wrong.

So I am waiting for her call…won`t hold my breath!

It was my last neuros idea to go for another opinion. She said, Would you like a 2nd opinion? I said Id already had had several!

luv Pollx