almost blubbed in front of my writing class colleague

Aside from when things first started (understandably I didn’t know what to think was going on). I’ve been pretty held together majority of the time and trundled along.

I think the latest flare up which hasn’t completely recovered (started July - early days still I know) coupled with the fact I’m having new tests has brought everything to the forefront of my mind.

I write in my spare time and have completed a novel which I’m editing - it’s taken me 3 years to get here because of things that have happened along the way - my health being a major factor. When discussing the obstacles stopping us from our goals with a colleague I almost burst out crying (Silly I know).

I guess more than anything I’m more scared of them not finding anything new on the tests and still being here in limboland without help. The thought of MS doesn’t particularly scare me- not that I want to have it - but to be honest just knowing whats going on would be a relief.

Have my follow-up neuro review booked for feb. Still waiting to hear back as to when my MRI/LP/EVP is likely to be - hope it’s soon. I presume if anythings found the neuro would contact me and see me earlier before the feb appointment.



Huge hugs you’ve had a rough time of it. I know how you feel about not wanting ms but then not wanting to be left in limbo wondering either Axx

Big {{{hugs}}} and good luck with your novel!

Wow - have always wanted to write a novel! Good luck with it, and hope you get some answers soon xx

Hi, I get exactly what you mean when you say if you were dx`d with MS, you would know what is causing your problems.

I was like that myself. And even now, after being told I defo do not have it…I`d rather it was MS than HSP…because of the 50% possibility that it could be passed down to my kids and grandkids.

But we cant change or run (I wish) away from a firm dx. We have to accommodate into our lives as best we can.

I have spent eons in limbo land, but MS was always lurking in the air, so I know how you feel hun.

I used to cry for myself, but Im all cried out now! I can still at a sad film or a sad story from someone else. Crying is supposed to be good for us, isnt it?

Keep visiting this site and we`ll do our best to support you.

luv Pollx

Thanks guys

Purpledot - I’ve always wanted to write too so been pursuing that dream since I finished my masters (having had a short break from doing anything else for a while first). Been difficult as I work full-time but determined to get there - just so hard as when you’re not well the last thing you feel is inspired. I have it comepleted, I just need to rehash bits to get them perfect so I have some small semblence of a chance of my book not being thrown onto the slush pile. Who knows maybe if I get there one day I’ll use my experience of getting diagnosed for a book :slight_smile:

Polly - Nobody else can understand the difficulties of limbo more than you and the uncertainties when your diagnosis has chnaged then so much. You’re a saint - I don’t know how you’ve kept your head screwed on through it all. Thinking of what you’ve been through makes me feel like I must pull myself together and give myself a pep talk.

It’s hard for other people (who don’t have these health issues) to understand why you might want the tests to give an answer and show something, but I knew people here would understand.

I’m feeling better over the weekend at least. I just really hope that appointment for tests come soon so I can get on with finding out.



Glad you are feeling a bit better Reemz.