Argggghhhhh Limboland !!!!!

Limboland feels like forever , Had my 1 year appointment with neuro and because i still have all the sensory symptoms that come and go and get worse he still cant do anything until i have a relapse … I dont want a relapse but would like to know im not going MAD … Never know wether im coming or going with the tingling,numbness and all other feelings we have.

Anyway rant over hope you are all well and since this is the first i have been on this year you all have a good 2013

Mandy x

Hi Mandy, your post is similar to anon`s. Limbo is a difficult place to be. i was there for what seemed like eons. neuros came and went and each one only had me more confused.

My latest diagnosis is incomplete, but i`ve finally settled my mind that I dont have MS, as I was led to believe.

Without good evidence, neuros cant diagnose us easily…best to wait thant get a wrong one, or two, like I did!

Hang on in there hun.

luv Pollx

Hi Mandy

I’m a fellow limbo lander and issues started over a year and a half ago. I’ve seen 2 neuros, had 2 mri’s, bloods and EMG’s with only non-specific lesions found. My symptoms were: Neck spasm July 2011, pins and needles, numbness, bladder and bowel issues Oct 2011, The hug April 2012, facial pain? TN May 2012. It was after this episode I got referred to a new neuro as I felt the other neuro just didn’t want to help.

My neuro does think I have possible MS though scans aren’t conclusive. I had the option of LP and eveoked potentials whch would not have given me treatment if I was diagnosed and would only have given me a diagnosis of probable MS. So I declined in Sept as all my symptoms were improving and have continued improving since apart from the odd blip. My next review is march.

Since I’ve found a neuro that I know is on my side and my symptoms are improving I’ve tried not to over focus and analyse my health. I listen if my body tells me I’ve overdone it but try and enjoy being well at the moment. Limbo land is hard - I’ve been through the frustrations, tears upset, worry etc you’re feeling. I just want to say it does become easier and the symptoms can get better - though things don’t always go back to complete normal of course.

I agree with Poll - I know it’s hard being without an answer, but it’s better to wait and be sure it’s the right answer. As long as your neuro is on your side if something new happens you’re in safe hands. It’s bad but sometimes time is the big teller. My neuro’s waiting to see if I have another episode as she’s classing all the above as two minor episodes. So we’ll wait and see but I’m certainly not going to let what if take over my life and I hope you don’t too.

Happy new year



Thank you for the replys i agree its better to have the right diagnosis … It;s just hard to accept that i dont know why i feel all these strange feelings … He did say how pleased he was i was still working as he has seen many in my shoes who dont work but i am adamant that i must work as long as i can i hate taking tablets and being ill… but thks for support i think we all need it at times

So thank you its appreciated

Mandy x