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Out of limbo - reflections on my recent diagnosis

Hi everyone

Some of you might remember me from when I posted last year, when I was waiting to go in to the National Hospital for Neurology for tests. Back then I was still in limbo, having had a 'clinically isolated syndrome' in November 2009 and being told that my recurring and new symptoms were not MS attacks because they didn't last for long enough, involved the same symptoms as the CIS etc. etc.

Well, the short story is that I finally got my MS diagnosis just before Christmas, after new lesions were found on my MRI scan. The scan also showed faint (older) lesions on my spine, which had never been scanned before, so it's impossible to know how long they have been there.

The tests at the National also showed that I have cardiovascular autonomic dysfunction. This means my circulatory system doesn't always work as effectively as it should, causing bouts of low blood pressure and dilation of my blood vessels. This is porbably what causes the patches of extreme flushing and burning sensations I get in my face, hands and feet. This might also be contributing to my chronic and debhilitating fatigue. They aren't sure. Apparently it is an area in which little is known. Perhaps that means I will become an figure of national interest to neurologists! (If only.)

They are also hedging their bets on whether my previous diagnosis of chronic fatigue syndrome was, in fact, the start of me having MS. They say it's tempting to think that, but they can't know for sure because I had no neurological testing at the time. But it is important to me because it seems relevant to whether/how I treat my fatigue, or even what type of MS I have. I have never recovered fully from the 2 periods of illness I had in 2003 and 2005. Does fatigue count on its own as an MS symptom?

So, some answers but still lots more questions. And although I was fairly sure it was MS, I didn't realise how much of me was still holding on to the hope that by some miracle it wasn't. That it was something which could be easily fixed. That it was something that would go away, get better, leave me alone. Getting my diagnosis is a strange mix of immense relief, fear and grief. The support that comes with the diagnosis makes it easier to deal with - for one thing, my GP no longer thinks I am a hypochondriac! And I realise that, at times, I was even doubting myself and wondering if I had somehow convinced myself I was ill and creating psychosomatic symptoms. It's kind of like getting a stamp of approval that 'allows' me to be ill, to have bad days, to not always cope with everything.

Now I guess I begin the process of learning to live with this condition. I'm finding it hard to decide what language to use about it. Somehow that seems important, as if the way I choose to think and talk about it helps put it in perspective, or defines how I think about myself and MS. I've heard some people call it the MonSter, but that gives it too much power. 'Disease' sounds like I'm contaminated and contagious. 'Condition' sounds a bit like being pregnant! I'm thinking something along the lines of 'companion', but that sounds a bit too friendly. Who knows what I will settle on.

The same goes for my 'symptoms'.  That sounds so medical. I'm trying to name them things that are more silly, to take some of their power away, or least to develop a shorthand to use with those closest to me. So my nerve pain is the 'sparkies'. The MS Hug (worst name ever?) is 'the squeeze'. I was going to call poor balance the 'wobblies' and may still, but it does sound a bit like I'm throwing a tantrum! Let's hope I don't have to name too many others for a while.

There is so much to take in when you are diagnosed with MS. So much information, so much to learn, so much to think about. What's most scary is all the uncertainty. But one thing, perhaps the only thing, I am certain of is that I'm not going to let it win. As an old friend of mine said to me, "I may have MS, but it doesn't have me".

 

Hi Mandy

It is a shock when you are finally given the dx of MS, even if your sub conscience was telling you had it all along.

As a good friend with MS said to me when I was talking about it with her. MS is not the worse thing you could have been told that you have. Even if you believe it is at the time. 


That information; although it could be taken as patronising; has helped me come to terms with MS and as time has gone on I have discovered that she is right.

Good luck and I certainly hope you continue with that positive thought.

Wendyxx
 

Hi Mandy

I'm still in Limbo, but can really understand your dual feelings, partly of relief to have a diagnosis at last, and partly the sadness that you do actually now have MS.

It's such early days for you yet, but I love the way you're trying to find 'names' for various aspects of the condition - you seem to be dealing with it very positively. I so hope you get all the support you need, i.e from Neuro, MS Nurse etc.

I've been having symptoms for 5 years now, which have been getting progressively worse, but, like you were, have been diagnosed with CFS/ME. Certainly fatigue is a big part of my life, but the acute nerve pain in my legs and the burning pins & needles in my feet etc don't seem to go along with that.

I have an appointment with my Neuro next month, & a friend of mine advised me to ask for a referral to the National Hospital for Neurology. I see you were there. Did you find it really helpful and would you advise going there?  I was really interested to read your post - they seem to be very thorough in their investigations.

Anyway, I would value your thoughts on this. Do take care, & give yourself time & rest as you come to terms with your diagnosis.

Bren x

I heard somewhere of someone who calls her MS- Fred- as its someone who lives with her/him and affects everything she does without her having much control over it.

I guess it works for some people especially with little kids so they get used to this thing inside you that you call Fred is why mommys legs dont work today and maybe hands tommorrow.Depends what mood Fred is in or if he is asleep.

Pip

Mandy,

Brilliant post, I think reflection in all areas of life is important...

One particular piece resonates with me when you talk about your GP no longer thinks your a hypochondriac....I really laughed at that. My GP has been lovely but freely admits has no idea what is going on with me.

It was such a relief when I saw the neurologist and he understood what I was experiencing and believed me....it's amazing how important it is to us to feel somehow vindicated. I think it may because it's "unseen" the fatigue etc ??

Anyway it's the start of a different journey for you so although ms will be a factor in that journey you also have a blank page so keep writing posts please.... you write very well

Gillian

Morning Mandy x Just wanted to say hello and I agree - I loved reading your post !! xxjenxxhappyflower

Thanks for your replies. It's good to talk to people going through similar things.

Corkie, thank you for sharing what your friend said. It is very true. There are many, many worse pieces of news I could have received, and I do try to remember that. But I also think it's important to acknowledge that this is my reality. There are things I have lost, things I might never have, ways in which my life (and the life of people around me) has changed. Unless I acknowledge and accept that, it feels like denial and that never leads to happiness! But yes, part of accepting it is acknowledging that it could be worse.

bren2, I was actually referred to the National Hospital because I had symptoms that my local neurologist didn't think were consistent with MS. I was referred to their autonomic unit. Stop me if you know all this, but the autonomic nervous system is the bit that controls all our unconscious processes, like breathing, sweating etc. MS tends to affect the central nervous system. However, they did do a repeat MRI, including scanning my spinal cord, and based on the results referred me on to the National's MS team. From my experience so far I would recommend being referred there if you live close enough. In particular, the MS nurse specialist has been fantastic. Good luck with getting more clarity, and living with the fatigue. If you ever want to chat to someone who's had a similar journey please feel free to contact me.

Gillian, I think you are spot on. So much of what we experience is unseen. Medical corraboration does feel like vindication! It's funny that I can now hit up my GP for copious amounts of drugs when before he was reluctant to give me anything!

Hi Kizzy, I'm glad you enjoyed reading my post. Thanks for the feedback.

Mandy

x

Excellent post Mandy.

Some of what you have written sounds so simlilar to posts I have read about other conditions too. About people not being believed leading to them doubting themselves too. I used to run a Tourette's syndrome forum ( I have TS) and so many people started to think they were making their symtpoms up, forcing themselves to tic and that they COULD help it if they really tried harder. Doctors didn't believe them, schools didn't believe their kids. Awful.

It also made me smile when you wrote; "As an old friend of mine said to me, "I may have MS, but it doesn't have me" as this is the same phrase that many of us use about TS but using TS instead of MS.

I'm sure there is a book for childrens about TS called 'I have Tourette's but it doesn't have me'