Surviving Limboland

LimbolandAccording to Dante’s Inferno, Limbo is the first circle of Hell. With good reason.

Someone emailed me last week, asking how to survive MS Limboland, that awful, terrifying period of waiting to be diagnosed.

Some of us are ‘lucky’ enough to be diagnosed relatively quickly, others wait months or years. Emailing back and forth, we came up with ways to get through MS Limboland:

  • Learn about the process of diagnosis, the McDonald criteria. This is vital to understand just why Limboland exists and how long you might spend there. Your neurologist will probably want you to meet all the criteria before giving a firm diagnosis.
  • If a suspicion of MS is raised, find out if you can have access to your local MS team, the MS nurses in particular. They are a fantastic source of support and information.
  • If you want to learn more about MS, stick to the trusted websites only, such as the MS Society, MS Trust or Shift MS. But bear in mind the forums, although monitored, are other people’s opinions and experiences.
  • Seek out support from close family and friends, but choose who you tell carefully. The last thing you want is to be more worried about how they are feeling than looking after yourself.
  • Think carefully about whether you want to disclose your possible MS diagnosis at work.
  • Be prepared for people to tell you horror stories about friends/people they know who had MS. Don’t listen! MS is unique to every single person.
  • You might have to be proactive in speeding up the diagnostic process – don’t assume you’ll sail through the system. When you have your first appointment with a neurologist, take someone with you so you don’t miss any important information.

Helping others through Limboland is important to me. I followed very few of the above points, and as a result I had a pretty miserable, lonely time.

I assumed I would be diagnosed the first time I saw my neurologist (hah!), I googled everything about MS (and frightened myself silly) and I made the mistake of confiding in (up until that point, friendly) colleagues. In reality, my diagnosis took 10 months, I since found out that no, Diet Coke did not cause my MS and my colleagues are now my ex-colleagues.

Wouldn’t it be great if there was a booklet given to everyone in Limboland outlining these points? If you think there’s anything missing from the list, please let me know.

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26 thoughts on “Surviving Limboland

  1. Another important point is misdiagnosis. It does happen that people are diagnosed with MS but don’t have it and vice versa.
    Imagine been diagnosed with MS and then given clinical treatment to stop MS progression but you have something else – what a waste of time, money and emotion.
    I recently heard these figures but cannot find anyway of confirming the information. A diagnosis of MS when in fact you have something else is relatively rare, only about 1 in 10 or 90% success rate. The criteria for diagnosing MS is apparently quite strict.

    Limbo-land is where they are making sure that the suspicion of MS is indeed correct. I think this is better than receiving a misdiagnosis.

    • stumbling in flats says:

      Excellent point Patrick. I’ve heard that quite a few times from people. Must be dreadful to go through.
      Limboland is important to get the diagnosis right, but there also needs to be support in place for people going through it. Totally understand why the McDonald criteria is so strict.

  2. Kerri says:

    I made a similar list awhile back, but for newly diagnosed.

    Our lists are different but address many of the same things. I’m sure the person who emailed you and many readers will be helped by the time you took to share your good advice.

    • stumbling in flats says:

      Hi Kerri,
      I read that post when you published it and thought it was a brilliant one (wish I’d thought of it!). It’s definitely a must-read.
      I sometimes wish I could turn the clock back and go through Limobland again. Such a tough time and I really didn’t understand anything at all. Hindsight’s a wonderful thing!

  3. great list 🙂
    “Be prepared for people to tell you horror stories about friends/people they know who had MS. Don’t listen! MS is unique to every single person.” people will still do this after diagnoses :/
    and i want to hit the people who think diet coke/aspartame causes ms on the head with a rubber mallet *shakes head* um MS has been around a lot longer then either of those things

    • stumbling in flats says:

      Hi Jennifer,
      Thank you! Funnily enough, just the other day at work, someone told me a terrible story about an uncle of theirs who had MS – ‘awful it was, just tragic’, blah blah blah. Thanks for that, lol.
      And yes, fantastic point (which I’d never realised before…) of course Coke wasn’t around hundreds of years ago!!

  4. Agree with Kerri and Jennifer — that is a great list!! Wish I’d seen it or something similar before I was diagnosed. I think so many of us go through similar pre-, mid-, and post-diagnosis experiences that it’s helpful to hear from as many who’ve “been there/done that” as possible. Of course, as you noted, MS is unique to every single person, but there are commonalities at the initial stages that might be reassuring to read about. I also made a list (forgive the unwieldy title!) of Top 5 Things I Wish I’d Known Before I Knew I Had MS, As Well As Things I Wish I’d Known Immediately After Being Diagnosed:

    • stumbling in flats says:

      That’s a fantastic post! Must admit, I knew absolutely nothing about the whole limboland thingie. I didn’t even know I was there until I stumbled on a forum that described my situation perfectly. D’oh.
      Took me ages to understand the whole thing, why it took so darned long to get diagnosed, etc. So, so glad it’s over.

      • Thanks! I was lucky to have escaped limboland. I went in to the doctor’s with numb/tingling hands thinking I had carpal tunnel (HAHAHAHA). After asking some questions, the doc sent me straight to a neurologist. As it turned out, my doctor’s brother has MS, so he was very familiar with what I was describing. From there, I had an MRI, the lumbar puncture, and, ugh, MS!

        • stumbling in flats says:

          Blimey, that was a speedy diagnosis!! The ten months it took me were without a doubt the longest in my life, just pipping my pregnancy with The Teenager, lol. Whoever said pregnancy lasts 9 months was wrong, meh.
          Mind you, I guess I was quicker than some people. Was given an MRI to rule out MS (after I kicked up a bit of a fuss), but as soon as someone looked at the scan, I was taken straight for a lumbar puncture, which showed up oligoclonal bands. But, then I had to wait for a confirmed second MRI and relapse showing more lesions on the old brain. Am sure if I had gone private, it would have been even quicker. Was talking to two MSers the other day who took that route and they were diagnosed speedier than me. Hey ho.
          ps was kind of fun seeing my brain on screen though!

  5. Reikiblossom says:

    Thankyou for that post!For the past year and a bit, I’ve been keeping a symptom diary as advised by my GP and had help from some lovely people on the MSS forum in distilling all that info into a manageable list to present to my GP and soon, to take to my first neurology appointment. Finally.
    Its hard not having a label because you don’t have a signpost to show others the way to understand what you’re going through. Especially these ‘invisible symptoms’. I’d just like to be able to point someone to a website or shove a leaflet in their hand, but I can’t until I have a diagnosis. Neither can I fully come to terms with what I’m experiencing – I just have to cope on a moment to moment basis, but its hard living with all these little alarm bells going off all the time. My body is yelling at me to listen and all I can reply is ‘I have to wait four more weeks. You’d better shout at the neuro when I finally get there!’

    • stumbling in flats says:

      Hi there!
      Glad you like the post, thank you!
      I know exactly what you mean – I went from a ‘diagnosis’ of possible MS to likely MS to probable MS, then finally, finally, highly active MS or rapidly evolving MS. So confusing and such a horrendous time. You can’t tell people you have MS, but you can’t tell people you might not have it.
      I think it would be great to have Limboland taken more seriously by health professionals and also the wider public. It’s a very real thing to be going through. I don’t know of any other illnesses where this waiting period can be so protracted, yet a necessary thing to go through. It’s like you’re sent to a place you have no hope of leaving until you’re told – like a holding bay.
      I really hope you get some information at your neurology appointment. Would be great to hear how it goes?

  6. Angela says:

    Interesting post to read.
    16 months down the line I’ve gone from a diagnosis of ‘think’ this is a clinically isolated syndrome , to yes it’s MS, to possibly MS, to probable MS to NMO spectrum disorder , to Aggressive CNS inflammation not likely to be MS to more likely in the future to be NMO ( Neuromyelistis Optica ). I’ve gone from walking independently , to stumbling around independently to using a wheelchair and now a stick and notability scooter. I have lots of problems with my eyes and all the usual symptoms associated with MS. I have had 4 MRI’s and a lumbar puncture and been on high dose steroids for the majority of the last 16 months as well as a collection of other drugs to control pain and vertigo/ dizziness. I’ve read everything I can read on both MS and NMO. I remain reluctantly in limbo land extremely frustrated. I agree with everything on the list but you did miss one important factor when finding yourself in limbo land ….. A sense of humour ….. 🙂 x

    • stumbling in flats says:

      Hi Angela!
      Totally right, a sense of humour is absolutely vital. And, you mentioned CIS which I completely forgot (blame the brain). I’d never even heard of that before and had no idea it could stay as that forever, so I was basically told to go home and wait. Maybe there’ll be another relapse, maybe not. Not an ideal situation, but nothing like what you’ve gone through. Don’t know how you’re coping with all those steroids either. I just hope you get answers soon. Can’t believe you just haven’t got a concrete diagnosis after everything you’ve had.

      • Angela says:

        Well the sense of humour definitely helps you to just get on with it! I could hide myself aWay and cry all day but it isn’t going to change anything ….

        • stumbling in flats says:

          Exactly. I’m with you on that one. Some days I just want to hide away, but then think, well, what’s that going to achieve??

  7. Angela says:

    Oh and I forgot to add total resilience , grit and determination along with that sense of humour 🙂

    • stumbling in flats says:

      Too right! That which does not kill you and all that. Grit is a fabulous word and pretty much sums up what you need to get through it.

  8. Sally says:

    Missed the whole limbo land thing. First minor eye issue was put down as a viral thing (but written in medical notes as suspect ms symptom) , various other symptoms numbness, pins and needles, dropping things all waved away as nothing( but all noted in notes as more evidence of suspected ms). Change of job/county and therefore doctor in1995 led me to a blunt no nonsense Yorkshire doctor. First time I saw her with strange numbness in thighs she looked at my notes and sent me off for an MRI . My research scientist radar started pinging at that point and right enough, the rest is history. Only got hold of medical notes after I moved to Belgium and my new neurologist wanted to see my medical history. Took me 4 months, 60 quid and many nagging phone calls for NHS to forward copy of my notes. So much stuff written in my notes that no doctor ever told me. Plus they lost my MRI results so I have no first reference to compare my subsequent mris to. My Belgian neurologist still laughts at how difficult it was for me to access my own history. I now have my own little collection of DVDs from my MRI scans and get to add a new one in January. Get scan in morning then go up for 6 month appt with neurologist and stare at pretty pictures of my brain and spine. Please tell me guys that it is easier to see your own medical notes in the UK now

    • stumbling in flats says:

      Blimey! I’ve never asked for my medical notes (too scared) but the letters I was cc’d in to are mostly fabrications, bar the medical stuff. I’ve often thought about appealing and getting facts changed, i.e. Stumbling is widowed and anxious. Hmm. Not quite. Plus, it’s written down that apparently I told a whole different story to A and E as I did to first neurologist I saw, which is utter nonsense. Why would such a frightening episode change by re-telling it? My long-lasting memory is of being told in A and E that there was absolutely no way it was MS.
      We definitely live and learn.

  9. arwen says:

    Definitely a helpful post. I am in limbo having been told by neuro that based on my symptoms and neuro examination they were doing an mri to look for ms. That has now come back clear but leaves me in the dark as to the cause of all my symptoms and with a partially numb foot until I see him again next month

    • stumbling in flats says:

      Hi Arwen,
      Thank you! But, so sorry to hear you’re still in the dark. I really hope you find some answers next month.
      Try to stay calm (easier said than done, I know). Unfortunately, there is the McDonald criteria for MS and you kind of need to tick all four boxes before a neuro will diagnose MS.
      I knew absolutely nothing about this at the beginning and really wish I could go back and tell myself what it’s all about.
      Thinking of you,

  10. Reikiblossom says:

    Dear Stumbler, I had my first neuro appointment today. (I imagine an 80’s computer voice saying ‘Well done. You have reached Limboland Level 2!’)
    My GP’s idea of ME/CFS has been thrown out the window to be replaced by ‘either MS or FND – Functional Neurological Disorder. So either my nerves are damaged and not working properly, or they are just not working properly. Hey ho. MRI in two months (can Dr. Who swing by and fix Limboland time please? It seems to be running slow…) At least I now know there is definitely something physiological going on.

    • stumbling in flats says:

      Hi there!
      So glad there seems to be some progress, however slow. And I know exactly what you mean – time in Limboland is a curious thing. It slows right down, but when you’re in the neuro’s office, it speeds up! I seemed to be in and out in five minutes, left with so many carefully-prepared questions. Limboland is not a nice place to be, but good to hear you’re moving through the ‘levels’!
      Good luck with the scan….

  11. Reikiblossom says:

    Finally, a diagnosis! My MRI came back ‘within normal limits’ so I’ve received an FND diagnosis. However, I’m not totally dismissing the idea of MS as my scan was done on the less powerful T1.5 machine and I’ve not had an LP…but for now, I’ve got a treatment plan. Not the CBT that the neuro recommended (oh no, that has a year long waiting list) but referrals to the local Chronic Fatigue unit (that’ll deal with one symptom and I might get counselling) and an ENT referral (to explore the dizziness). I still feel like I’ve got one foot in limboland.

    • stumbling in flats says:

      Hi there!
      That’s good news but a little disappointing too? But so glad you’ve at last got a treatment plan and are getting help with fatigue. Result!! Hopefully they’ll sort out a more powerful scan?

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