Tag Archives: diagnosis

Oct 30 2013
26 Comments
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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Oct 28 2013
6 Comments
Emotions

Every Moment Counts

blue sky thinkingCancer Research UK has launched Every Moment Counts, ‘a platform where people who have been touched by cancer can upload and share precious moments, both everyday and extraordinary’.

The idea behind it is that when you’ve experienced cancer, these moments make you suddenly hyper-aware of the here and now and of how wonderful it is to be alive. It’s sad but so often true that sometimes it takes a serious illness to remind us of this.

People like me who live with MS may not face a life-threatening diagnosis that cancer can bring, but we do have to adjust to a lifelong, degenerative and incurable illness. Life as we know it will never be the same again.

I’ve spoken to a lot of people with MS over the last two years, and we all feel that MS has made life more precious. The mundane can seem magical, we value our friends and family much more and we just seem to appreciate life in a new, more vivid way.

MS makes us stop in our tracks and take stock. What once seemed important no longer is and vice versa. The old rule book is torn up and thrown away. Although MS can appear to condemn us to a life of misery and uncertainty, it can also liberate us from old routines and destructive habits, both mentally and physically. After the obliteration of diagnosis, we can rebuild our lives in a way we choose, where we can savour precious moments so much more.

Someone told me recently that one day they just sat and watched the clouds, something she hadn’t done since she was a child. As for me, MS has made me see my life through new eyes. I’ve weathered the storm and come out the other side.

I sometimes feel like a child again, taking pleasure in the most simple things. Meeting an old friend for coffee and having enough energy to hold a conversation. A hand-written letter arriving with the post. Baking a tray of chocolate brownies with The Teenager.

Every Moment Counts is a brilliant idea, for all of us.

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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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Jul 31 2013
43 Comments
Emotions

And This Is What You Could Have Won…..

and this is what you could have wonA post caught my eye on the MS Society forums the other day. An anonymous person wrote, ‘what would you have done if you didn’t have MS?’

There were some curt replies – ‘a futile question’, ‘this question is a bit pointless’, ‘I don’t think there’s any point wondering about this.’ But the second part of the question actually gave it a point – ‘Or have you been able to do all the things you want or wanted to do with just a few adjustments?’

I think this is perfectly reasonable to ask, especially as it was posted in the ‘new diagnosis and before diagnosis’ forum. Isn’t this what we all ask ourselves after we’ve been diagnosed?

Someone also replied that this was the same as wondering what it would have been like to be born a boy instead of a girl. Well, no, it isn’t. We’d be none the wiser if that had happened. MS generally strikes in the middle of someone’s life, there is a definite before and after.

Since being diagnosed, I have had to tweak my career path. Who knows if it’s better or worse than what I had previously planned? It’s just been modified to take MS into account. In a twisted way, MS has added a sense of purpose and drive to my life, which, truth be told, was meandering quite merrily towards an unknown destination. Essentially, MS has given me a massive boot right where I needed it. MS made me reconsider my life from every single angle, and how many people get that chance whilst still relatively young?

Or is it just too easy to blame MS for everything? ‘It’s not me, it’s my MS.’ It’s a cast-iron excuse, something to fall back on when the going gets tough. I hold my hands up. There were many, many times when I wailed ‘my life is over, s’over, s’not fair.’ For almost two years I convinced myself I had no future, nothing worthwhile to contribute to society. I’m not saying MS is a blessing. Far from it. But if we have to live with it, we have to make it work for us.

So, if we look at the question again, we could ask ourselves, ‘What would you have done if you didn’t have MS, and why aren’t you doing it?’

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Jun 30 2013
80 Comments
My Ramblings

Do You Have MS? Take The Quiz!

quizThere’s a good reason our neurologists and MS nurses warn us not to google MS. A tweet went round recently with a link to a website that promised to diagnose you with MS or not, just by answering 12 simple questions (here).

I took the quiz, with the knowledge I have already been diagnosed with highly-active relapsing MS. The website’s Androctor Anna, however, gave me unexpected news – ‘I screened you for multiple sclerosis. Based on your answers, you don’t fit the diagnostic criteria for the screened disease.’

I admit, when my neurologist first diagnosed me with Clinically Isolated Syndrome, which may or may not lead to MS, then told me not to look for answers on the internet, the first thing I did when I got home was pour myself a stiff drink, boot up the computer and surf. Endlessly. I’ll bet most of you guys did too.

I can laugh at these quizzes now, but if I had found them back then, would it have been a more serious matter? Would it have reassured me? Through trial and and a lot of errors, I eventually stuck to only two websites – The MS Society and the MS Trust. Friends were just as naive as me though – my inbox was flooded with links to various websites. One admonished me for drinking diet Coke, whilst others offered amazing herbal cures or secrets to beating MS, if only I paid hundreds of pounds for the privilege.

More worryingly, other websites chastised me for putting sun cream on my son. By ‘denying’ him vitamin D, I had unwittingly increased his chances of developing MS. And it’s not just internet websites. Have a look at some of the books for sale about beating MS:

  • The Hippy Guide to Eliminating Multiple Sclerosis (Sugar Diet Illness)
  • Talking Back to MS – How I Beat Multiple Sclerosis Using Low-Dose Naltrexone
  • Fighting the Dragon: How I Beat Multiple Sclerosis

I’m sure some of these books have merit, but MS is still an incurable disease. Providing false hope through books, diets or remedies is cruel. MS can be managed, not cured. And are we under pressure to fight back at all costs, rather than concentrate on disease modifying drugs and adjusting to a life with MS?

One thing is certain though, where there is illness, you can be sure there are people out there making money off the back of it.

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