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A HUGE Shout out to Rizzo....

This is a message for Rizzo, to thank her so much for all her help and guidance during my diagnosis.

I have written a blog-post today about Limboland and have mentioned your help, and someone else has just posted a comment mentioning you too!

It’s today’s post at www.stumblinginflats.com

Thanks again!

Choochy (aka Stumbling In Flats)

p.s. I posted this comment in the Limboland forum too and all the replies are going there…

Thanks!

Hi Does anybody know where I can get an Orange MS Wristband. People think I’m drunk, which would be nice!!! Thanks

Your blog sums up beautifully why I try and help out on the Limbo forum. It’s not just me though, and the more the merrier. Come on folks :slight_smile:

Karen x

From choochy’s blog:

"Sometimes I wish I could go back in time to that terrifying morning when I woke up and couldn’t speak properly or walk in a straight line. If I knew then what I know now, I would have been a very different person. For someone whose father had MS, I knew surprisingly little. I had no idea what CIS was, what an MRI would show, why I had to have a lumbar puncture.

I was in Limboland. I might develop MS. Or I might not. It is a cruel waiting game. I didn’t understand the ‘multiple’ part of multiple sclerosis. I left the clinic after that first relapse utterly petrified. What was I to do now? I had been given a couple of MS leaflets and information about how to contact the MS team. But if I didn’t yet have MS, why would I be given that? I was bewildered.

I accessed a few forums, one dedicated to Limbolanders and I gained a huge amount of information[…]. The forums were a lifeline, but at a cost. A lot of people had been stuck in Limboland for years, some well over a decade. Despair and anger oozed from the forum. We were all in a nasty, dark waiting room and I would feel a painful stab of strange envy when someone posted that they had been diagnosed, and were now leaving us behind; they had the golden ticket.

I read everything I could about the McDonald criteria, ticking off the four points bit by bit. Finally (but only 10 months later), I had my ticket. My brain threw up more lesions, far too many and I was diagnosed. Possibly one of the best and worst days of my life.

I wish I had been handed a step-by-step guide to life in Limboland, clearly explaining the whole diagnostic process, the frustrations, the waiting. Could someone please publish this? Letting us know that you have to go through so much, from first relapse to eventual diagnosis. Break us in gently. Please don’t throw us in the deep end.

So, to everyone diagnosed with MS, look out for the Limbolanders. Treat them kindly. Be an inspiration to them and show them we are not so bad, it’s not so scary. There is a life after diagnosis. Aren’t we all proof of this?"

Hi Choochi, I was one of those long serving limbolanders, so I know only too well, how it can leave you! There can be feelings of anger, am I nuts?, isolation, as if none of the medics believe you, and a whole host of other stuff…mostly crappy!

There were 7 years when I was told I had 95% surety of having PPMS. It may sound a weired thing to say,but I accepted that as well as anyone could, I reckon.

I slotted into a catergory…I had my label!

There were years before that when I was told Iprobably had PPMS, as my rapidly declining mobility put me in a wheelchair, part-time, within 1/2 years of problems onset.

I`ve been a full time wheelie now for around 8/9 years.

Last year I was finally told I definitely DO NOT have MS at all! What I do have is a half baked diagnosis…spastic paraparesis…cause unknown! Good, eh?

So Choochi, thanks for your words asking newly diagnosed not to forget the limbolanders…yes, a very good post.

luv Pollx

Me again…I forgot to add how marvelous I think Rizzo is, for the way she helps so many of us out, with medical jargon etc.

Cheers Karen!

luv Pollx

So true from another limbolander. Rizzo has been fantastic and I love to read her very informative and positive comments that she gives to us all.

Moyna x

Hey Poll,

How frustrating! So hard to have been ‘given’ a diagnosis, only for it to be retracted.

Limboland sure does leave you with a huge amount of emotions - I think I probably had every single one and I went through a horrible, low time. Looking back, I can’t believe I survived it - It was incredibly stressful and I thought it would never, ever end.

Ok, it’s no joke being diagnosed with MS, but it brings clarity, treatment options, etc. I think I’m just about at the stage where I have accepted I have MS. I ‘lost’ my job soon after diagnosis and that’s been pretty awful too but I think I have come out the other end a stronger person. Strange to think MS could change my life for the better in some ways. It makes you clear a lot of stuff out your life and gives you a good chance to re-evaluate everything.

I trained as an MS Society support volunteer so am hoping to work primarily with newly-diagnosed people/limbolanders, as it’s something I’m pretty passionate about!

X

P.s. Karen, thank you for the blog extract!

Hi, oh that`s lovely re you training to work with limbolanders/newly diagnosed. You know EXACTLY how it feels and there will be understanding on both sides.

Good for you!

luv Pollx

All agreed. I wish Karen wasn’t an “anonymous” fellow poster…I can only express what a massive source of support, advice and comfort she has been in some of my darkest days with an enormous bunch of flowers…so here’s a virtual bunch !! @@@@@@@ | | | | | | | | | | | | | | |/ |/ |/ |/ |/|/ |/ Xxxxxx

Well that didn’t bloomin post how I did it, but you get the idea !!

Hi Poll!

I really hope so. I am passionate about being newly-diagnosed and how scary and unfamiliar everything can be. I want to show people that it’s not all bad and I think that’s why I started my blog.

I write about the scary things, sure, but I also try to show the lighter side of life with MS and I hope that comes across. A lot of blogs I read where just lots of depressing posts about medication, symptoms, fears, etc. And that’s fine, but I wanted something a bit funnier. I mean, living with MS certainly has it’s funny points and laughter is the best medicine…

X

You can’t beat a giggle :slight_smile:

You can’t beat a giggle :slight_smile:

rizzo is deffo a light in a dark place after her advice and input 3/4 of the enigma has been solved. xxx

Hear Hear!! X