Tag Archives: McDonald criteria

Oct 30 2013
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Emotions

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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Aug 30 2013
14 Comments
Emotions

At First I Was Afraid, I Was Petrified…

one tough cookieOn Wednesday, I had an appointment with my MS nurse to discuss how the latest round of Campath had gone.

I had a good chat, did a blood test, made a new appointment for next February and left, happy and relaxed. I’d reached a significant milestone.

This was probably the first MS appointment where the staff haven’t had to virtually prise my fingers from the reception desk and tell me to go home, everything will be fine. I always had just one more question, one more point to raise. I could quite happily have set up camp in the waiting room.

At my very first appointment with the neurologist, I left confused and with a head full of unfamiliar medical terminology, stunned that something so potentially huge could be on the horizon. I wanted to stay in that room forever, boring him to tears as I struggled to make sense of what he was telling me. At appointments with the MS nurses, there was a sense of comfort and safety as I sat in their room, emotions never far from the surface.

Having been thrust into an unfamiliar environment, I very quickly didn’t want to leave. The MS team had an answer to everything. If I could have taken an MS nurse home, I would have. The whole MS diagnostic process probably doesn’t help. Who knew it can take so long? Who, outside of the MS world has an idea what the McDonald criteria is, what oligoclonal bands are?

Not only that, there is the sense that your own world will never be the same. How do you tell your family? How can you cope once you start being bullied at work due to your diagnosis? How bad was my health going to get? The MS team helped me through it all. I was given access to a vast array of support, equipping me to become my own expert of my MS.

It’s been a long two years. When I look back to those frightening early days, I marvel at how far I have come. I’m still me, I just happen to have MS, and I now know exactly how to live with it.

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