Today I phoned the brilliant MS Helpline and explained my situation. To cut a long story short I’ve finally found the MS nurse at my hospital. I’ve left a message and hopefully she can get me help or push my neurologist to get this sorted. They agreed that 2 years is a long time to wait for a diagnosis. If I keep at it I’m hoping I will hear something soon. I’m in the middle of a relapse that has had a few frightening symptoms, bladder and facial numbness ( drooling is not the nicest), left arm giving up and now walking badly affected again. What I find amazing is that for people who can be so I’ll have to fight so hard to get sorted out. I’m not giving up, and I hope any of you who are in same boat are not giving up either. Xxx
Well done you for pushing for your diagnosis. I can’t believe you have had to wait so long!
I am also waiting to hear, it’s been two years since my first MRI showed lesions and I have just had a follow up MRI (so two years later) and am waiting to hear if any changes, if so, I think I will be diagnosed. Luckily I dont feel ill but do have odd sensations but I think the stress of all this is far worse. I am also wating on a call from my neurologist, he has phoned once and left a message saying he will need to see me but not ‘what about’ or ‘when’ or even a number so I could call him back grrrrr.
I understand what it’s like in ‘Limboland’!
Good to hear the MS helpline is so good, I might try them.
Vicky
Good luck Bev, its ridiculous people have to wait for so long!! I didn’t know you could use the MS help line if not dx, so thats helpful to know.
xx
Hello VICKY 3535 and BUNNYTHECAT, thanks for your replies. The helpline is brilliant, really helpful. I’m hoping now that I can get a diagnosis sooner rather than to have to wait another 6 months. It’s alright for the docs to say see you at your next appointment…and that appt isn’t till the end of the year,ridiculous. I hope you both get a diagnosis soon. I’d rather know what it is than not at all. Like you say, it’s the stress of it as well. Xx
Hi Bev, I had waited longer than 2 years and then when I did push for a diagnosis, I was given a 95% one of PPMS.
Some 8 years later, it was discounted and now I am left with half a diagnois of spastic paraparesis, which could be genetic, but we may never know, as there is no known family history of it.
Fun, all this mallarky, innit?
pollx
I’m laughing all the way mate. Lol. What winds me up is that I’ve got no support from medical side of things, I think that makes it worse as well. I hope they give you a definate diagnosis…half a diagnosis? How ridiculous! Do you know what I was told? Well, it’s looking like MS, but it could be one of 3 not very nice things. So, I don’t know what it is, I just know it’s ‘not nice’. (Trying not to laugh as I type).its like a Monty Python sketch!
Perhaps it’s a technical term? 
I have heard it said that, if there was a good sort of heavy CNS problem to have, MS would be it. Happy days, when MS looks like good news!
Alison
Thanks for that, I suppose it would be anyway, I’m now trying to get a scooter and I will customise it with lots of glitter 