Just Joined

Hi Everyone - I’ve not got a diagnosis yet, but have been looking at the site for a while and really feel it would be helpful to be part of the ‘limboland’ community!! It all feels a bit grim at times doesn’t it? Then there’s other times when I think what’s all the fuss about!


Hi Hazel - welcome, come and join in! We’re all very friendly and loads of us are not diagnosed so live in limboland. What’s your situation? xxx

PS sorry about the scary head image!!

Thanks for your welcome debc - it’s good to know there’s others who understand. It all started about 15 months ago when I had tingling/loss of feeling in my feet and legs which got worse over about a week. GP was brilliant and arranged for a MRI of head and body which showed up demyelination. Then I saw a neurological consultant who said it was a Clinically Isolated Syndrome with the possibility of MS if there was further symptoms. He said they’d ‘keep an eye on me’ and I was to ‘carry on as normal’ which I’ve tried to do. Since then I’ve had tingling in my left arm since early this year and they’ve now decided that’s carpal tunnel syndrome. A couple of months ago I had some weird tingling in my head (like a skull cap), then a bad headache and total exhaustion which resulted in me being signed off work for 2 weeks. I feel like there’s been a general deterioration and carrying on as normal is becoming more and more difficult. The doc said a few weeks ago that maybe this is my ‘new normal’! Well OK maybe it is - but it would be nice to have a proper reason why ‘normal’ now makes life so difficult… :slight_smile: Hope that makes some kind of sense!

Hi Hazel, and welcome

Sounds like maybe you need a follow up appointment? Couldn’t hurt anyway?

One thing you don’t normally have to worry about on here is whether or not you make sense - we understand!

Karen x

HI Karen - thanks for the welcome and for understanding. Doc wanted to see me in a couple of months - which will be early Sept. Next appointment with the consultant is in January! I don’t want to make a fuss and end up being written off as a hypochondriac, so at the moment my thinking is to carry on the best I can and see what happens…

Welcome from me too.

I would suggest you start keeping a diary noting what symptoms you have and how long they last for,as this will be helpful at your next neuro appt

The tendancy is to adapt to your new normal and forget the reasons why.

Take care


Hi Hazel,

I only joined last week. I have been in limbo for 18 years, my choice because my symptoms were not as bad as other peoples and I was lucky enough to be able to carry on. But now they back and different, I am going to see my GP in August and push for a conclusion, if it is not MS then it has to be some thing else. But the amount of reading I have done and the symptoms I have all point in the direction of MS. So welcome to limbo, and good luck with the diagnosis.

Hi and welcome :slight_smile:

Welcome Carrot Cruncher.

I hate that term the new normal - my neuro told me to get on with it at just put up with the symptoms and I agree it certainly doesn’t feel normal anymore for us does it.

If your symptoms are mild and you can wait till next year to see the neuro then stick it out if you’re worried about coming across as paranoid. If however anything new happens or you get worse I wouldn’ty hesitate particulalrly if you’re having to take time off work.

I hope you get the support you need from this forum - I’ve found it fantastic.



Hello and welcome x

Just wanted to say hi…and welcome.


Hi and thanks for all the new ‘welcome’ messages - pip, kelpex40, midnightmoon, Gokr and Clare. Pip the diary of symptoms is a good idea - I’d done some rough notes of stuff, but maybe not specific enough, so thanks for your help with that.

Kelpex40 - was sad to hear you’ve been in limbo for 18 years, that’s a long time huh? Hope you’re able to get the conclusion you need. I know what you mean about symptoms not being as bad as for other people - it makes me so sad when I read some of the posts on here and I feel like “why does it feel so difficult for me at the mo” when all these other people have it so much worse… perhaps at 51 I’m just middle aged and menopausal! lol

Gokr - thanks for your comments too. Seems to me it’s a bit of a balancing act between telling the medical folk what they need to know / not getting written off as paranoid!!

Oh yes, before I go, debc I love the new profile pic. :slight_smile:

Night all,

Hazel x

HI Pam - thanks for your welcome.

Hello and welcome! x