A Helping Hand in Limboland

sad stick womanSometimes 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 (a very, very special mention to ‘Rizzo’ who was amazing in answering all my queries). 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 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?

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20 thoughts on “A Helping Hand in Limboland

  1. Samantha Thompson says:

    Blumin brilliant today!
    I am hoping to log what has happened to me over the years, I need to make it interesting though. I thought of writing it down first and taking extracts from my diary.
    I have been angry and fed up for a while and have been unkind in my head and then the next thing I am overcome with immense fear.
    I am scared to lose my husband especially as the first left me during limboland.
    Can you remember everything from that time? You would be brilliant at describing the experiences.
    May I also say that without Rizzo I would have gone mad by now. What she provides on that forum is priceless and at the same time dealing with her own MS.
    I hope I can be helpful in my own way, once I get past my moody moo moo phase.
    Sam xx

    • stumbling in flats says:

      Hi Sam!
      Thank you for the comment, really nice of you. Isn’t Rizzo an absolutely incredible woman? She really does need to be nominated for an award or something. She helps every single person who asks her and provides such detailed answers.
      I remember far too much from that time! It amazes me now, when I look back on it, just how ignorant I was, and also, what a huge gap in the market there is for a Guide to Surviving Limboland without being too influenced by some of the forum comments, lol. I think with Limboland you have to feel your own way through it, with very little solid information (which is wrong!!!) and therefore we are so open to forum comments, depression, fear, etc. There’s loads of info on MS, but not the whole period leading up to a diagnosis. I fear I have clambered onto my soapbox again!!

      Don’t worry about being in the moody moo-moo stage, it will pass! I was a mess after my diagnosis, a right miserable moo moo. Now I’m quite a contented little moo moo.
      Have you been diagnosed yet? I know you must have said but my brain’s mushy today…..
      XX

    • stumbling in flats says:

      Sam!
      The minute I pressed the reply button I remembered!! Your GP thinks you have MS but you have to wait for the neuro?
      You must keep us updated – to everyone else, Sam writes a blog – check out my ‘MS blogs’ section for the link!
      XX (off to flush out brain)

  2. Samantha Thompson says:

    I haven’t got long to wait, seeing Neuro on Feb 18th. I admit to being obsessed with the words multiple lesions on spinal cord (in the letter to GP).
    Thank you for being understanding.
    Sam x

    • stumbling in flats says:

      Fantastic Sam! I know from your blog that you’re going through a pretty tough time and I really feel for you. I was in exactly the same place.
      I know it’s hard, but try to put it out your mind til the 18th. Churning it round and round your mind will just tie you up in knots. If you do get diagnosed, it really isn’t the end of the world, honestly. It kind of puts everything in place, you can look into treatment options and move on with life.
      I’m here when you want me! You’ve got my email address too, so drop me a line if you want to talk privately 🙂
      Thinking of you XX

  3. Good post, Flats. (Or do you prefer Stumbling? I’m too lazy to write out the whole thing, which of course I could have done by now and already been on to the rest of my comment.)

    So. I was lucky. I wasn’t in Limboland for more time than it took for the results of the MRI and spinal tap to come in. My family doctor has a brother with MS, so when I went in w/ my “I think I have carpal tunnel because my fingers are numb and I’m stressed and HAHAHA holy crap why are you looking at me pityingly?” he sent me straight to a neurologist. That was a horrific bit of completely unexpected business and my only experience in Limboland. I spent far too much time in those couple of weeks imagining the very worst (a special skill of mine). So, to conclude (at last, right?), it was a relief, as you noted in your comment to Sam — good luck, Sam, on the 18th by the way!! — the diagnosis was a bit of a relief. You can address that scary thing lurking under the bed.

    • stumbling in flats says:

      Hey there CrankyPants!
      You can call me anything. Some people shorten it to SIF, but that makes me sound like a kitchen cleaner?

      I know exactly what you mean. I remember lying awake in utter terror, night after night. Then impatience as everything took sooooo long. It was definitely a huge relief. Which is odd. It’s not the greatest thing to hear, but after months of wondering it was great. And you’re right, it is a thing lurking under the bed. Now it’s out in the open so I can punch it now and again.
      Where did you get your Wee Squeaky??? I love the photos in your blog. I am trying to learn how to attach photos to my tweets so I can post ‘cute’ pics of my cat, Bubble. She is currently on my sofa, on my duvet, again. Meh.
      XX

      • SIF it is (and I promise not to even *think* of a kitchen cleaner).

        I think I got Wee Squeaky at a store around Halloween. I actually had her before I had the real Squeaky, because I used to have another black cat who stayed with my husband after our divorce. I got the little plastic cat; he got the real one. Meh, as you’d say!

        Pictures of Bubble would be fantastic!! Thanks for the nice comments about mine. They seem especially needed when I make a disaster like the Collapsed Cupcakes.

        • stumbling in flats says:

          The Collapsed Cupcakes were cute. Not as cute as Wee Squeaky, of course. Funny how the smallest things make me laugh out loud in a quiet room, but Wee Squeaky peeking through the glass dish was a classic!
          Will grab The Teenager when I get a chance and hopefully get him to teach me how to upload photos from my phone onto Twitter. Bubble is especially sweet-looking right now, even if she’s still technically on MY duvet, meh (love, love that word!).
          X

        • stumbling in flats says:

          p.s. just looked at Wee Squeaky hiding again to cheer me up and realised it’s a plastic dish not a glass one. You can tell how tired I am. Must move cat off sofa. Oi, Bubble – Vamoosh.
          X

          • *I* just looked at the picture again too and laughed. Look for Wee Squeaky to make appearances in other photos. Perhaps I’ll sneak her in to see if anyone notices. Hope to see a picture of Bubble soon!

            Off for a Swank-approved breakfast. Alas, no pork cracklins/rinds allowed.

          • stumbling in flats says:

            I reckon Wee Squeaky should be make guest appearances in all your blog posts!
            (I am far too easily amused….) I forgot I was trying to cultivate an intelligent, witty persona and I’ve just ruined it, meh.
            X

  4. Karina (Kari) says:

    Excellent blog again Ms Stumbling

    Well, I am once again back in the land of limbo ~ not dancing though ~ I daren’t

    In November 2012, only a short 2 months after my ‘leg incident’ A neuro kindly gave me a diagnosis of MS ~ based on my previous medical history and lesions on my brain in MS places.

    Before the leg incident in September, I just thought I ‘suffered’ from a lot of trapped nerves :o/ MS never even came into my mind (I used to be a relatively intelligent woman.. honest) I just thought I was unlucky..

    I went on holiday in September, and had to be brought home 2 days later as my right leg was completely paralised ~ or should I say it was a lump of meat just dangling at the end of my body…. oh dear no, another trapped nerve!

    I had an MRI, my first ever, as all previous symptoms had disappeared before it got to the further investigation stage. The MRI showed multiple lesions in MS places and I was given 3x IV steroids…. and a CIS diagnosis. During the short period after this lots of the previous symptoms which had disappeared reared there ugly heads and I was then given the MS diagnosis.

    In January 2013 I saw another Neuro, who queried the first neuros diagnosis, but at the same time didn’t… (confused ???) I am…. And yesterday I went along to hospital AGAIN, to have the dreaded LP.

    I’m now laying here, with a sore back and the beginnings of the headache from hell every time I try to lift my head to drink yet another pint of water…. while also trying to type, which is really difficult when laying down 🙂

    Anyway, I hope I don’t remain in the land of limbo for too long, and that those little bands will show themselves freely. Please don’t hide and let me be one of the many MS’ers who have clear CSF.

    I know I have lesions on my brain (I’ve seen them), I know I now walk with a stick and I know that at times I can drop to the floor with fatigue at any given moment ~ I just want to know why :o(

    And I fully agree about Rizzo deserving an award ~ she’s a star

    K.x

    • stumbling in flats says:

      Hi Kari,
      Thank you so much. I cannot believe what you have been through these last few months, it’s absolutely terrible!

      Have they retracted the initial diagnosis?? As for the headache from hell, I’m with you on that one. No one warned me and there are no words to describe the pain. It was literally as if my brain was being squeezed, never had pain like it. Apparently caffeine helps, but don’t know if that’s true or not. Rizzo would know!

      Your story shows there needs to be much more clarity in the whole process. When are you going to find out the LP results?
      XX (hope your headache eases up soon, take it easy, lie flat as much as you can!)

  5. Karina (Kari) says:

    Hi again 🙂

    The original diagnosis hasn’t been retracted, it’s just being queried. Even when Prof 2nd Neuro started questioning it and said he needed the LP to confirm the MS diagnosis he was still saying ‘but in all probability it is MS’ Then when I questioned what would happen if the LP results came back as negative, he said, I wouldn’t be able to prescribe you with any DMD’s.

    I get the results in 4 weeks, so in the grand scheme of things it’s not too long to wait, I suppose….and then who knows. I suppose I will be left to wait it out for another relapse or get shuffled off to another Consultant on a different floor of the hospital.

    It’s scary stuff isn’t it? Knowing and seeing there is something wrong, but not actually knowing what is causing it.

    The LP was a horror too ~ I forgot to mention that lidocaine has no affect on me what so ever…. until after the 2nd time the Dr asked the nurse to go and get more of it. Then the penny dropped, ‘Ahhhh so that’s the reason I have any dental work done without a local’

    It felt like the nerves were being dragged out of my leg via my back ~ the only good thing was, was that for the first time since September I felt pain in my right leg. Boy, did I!

    Also I can’t use the caffeine tip, I gave it up 10+ years a go so any caffeine gives me palpitations and hot sweats…. I get far too jittery to want to even try it.

    I’ll just lay flat & guzzle the water.Hopefully it will pass in a few days ~ I can but hope.

    K.x

    • stumbling in flats says:

      Hey there,
      Fingers crossed for four weeks time! Thank goodness they’ve kept the original diagnosis, just a shame you have to go through an LP to satisfy second neuro.
      Look after yourself!
      X

  6. Scot says:

    Great blog !!! You always say it right , I remember feeling relief when I got my 1st dx in “97” , it took a year to get the dx & it was the year from HELL !!! But when I got the news I felt like “now that I know I can go on & learn how to live ” of course it was a roller coaster … But anyways , again great blogg I hope it brings alot of coments ! <3 🙂

  7. Scot says:

    Hi Sam I just wanted to say hang in there !!! I to like all MSers know how your feeling at this point , just keep in touch w/ other MSers they can be a real life saver , & i’m sure you will see that there always there & your never alone . MSers r an awesome group of people, a family really !!! <3 🙂

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