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.