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Discussion Starter · #1 ·
Sorry, this is a long story. But it does have a happy ending :)

So I had an appointment with my MS consultant today.

I'll try to keep the background short, I was diagnosed with Clinically Isolated Syndrome about 18 months ago. If you google CIS it tells you that it doesn't always lead to MS, but medical people see it as the onset, and with my MRI, lumbar puncture and symptoms, it's a given that it will be. My consultant was clear at the time that this was an MS diagnosis, but wouldn't be given the name until another relapse happened.

What happens then is you become obsessed with the next stage in diagnosis. You know it's going to happen, and you just want it over with. So I went along today in my usual state of dread of it happening mixed with fear that it wouldn't happen.

Then my consultant explained this:

My symptoms indicate that I had a relapse in January, in the form of optic neuritis, and strictly speaking that = confirmed diagnosis of MS. However, if he makes a formal diagnosis, he will then be obliged to start drug therapy - given that the idea of that is to prevent disability, and that I am managing by exercise, physio, etc. to do that for myself (more effectively than the drugs can - research shows exercise most effective, compared to the drugs, which are unproven), and that the drugs have side effects that are likely to interfere with my ability to exercise - then he will not diagnose until there is evidence of disability beginning. So he's telling me I have MS, but he won't yet put that on paper, as the diagnosis has potential to do me more harm than good.

So if you've read this far, thank you and well done :D

What it means for me is that today I stopped fretting about this diagnosis and realised that every appointment which doesn't lead to it is a sign of success, that what I'm doing with running, yoga and physio is actually working, and I did that :)
Whatever my symptoms are doing to me, I have stopped them from making me disabled by running like a crazy lady up the flippin big hills round here. And for the first time in two years I feel really positive about the future and in control of what happens because I've just had confirmation that the biggest factor in how this turns out is what I do :D

Also, feeling very pleased with myself about the fact that I ran a 10k race round the Great Orme when I was having a relapse :laugh: Today I am superwoman!
 

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That is fantastic:D:D:D:D

And there's me feeling so down because I didn't get a job I wanted, well your thread has just put into perspective for me and has encourage me to give myself a big kick up my arse.

10k run very well done. x
 

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I am so pleased for you. Well done! I know someone who was diagnosed with MS about 15 years ago, but she changed her diet and started doing lots of exercise and hasn't deteriorated at all and looks fantastic.
 

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Discussion Starter · #5 ·
That is fantastic:D:D:D:D

And there's me feeling so down because I didn't get a job I wanted, well your thread has just put into perspective for me and has encourage me to give myself a big kick up my arse.

10k run very well done. x
Ah, no, jobs and money are two of the biggest stresses in life...but kicking yourself up the arse is always good, trust me, I know ;)

You most certainly are Superwoman and an inspiration :thumbup:
Thank you :eek: I am feeling a bit good about it all today :)

I am so pleased for you. Well done! I know someone who was diagnosed with MS about 15 years ago, but she changed her diet and started doing lots of exercise and hasn't deteriorated at all and looks fantastic.
You know, I had been getting quietly wound up inside when people said that sort of thing about me, knowing they were saying it because they were happy to see me looking well, but a bit frustrated that they couldn't see that I have pain, fatigue, and more every day. But today it just clicked that I should be glad to hear those things, because it means my attempts to carry on regardless are working :)
 

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That is such amazing news :D

WELL DONE to you! I think this is definitely a good enough reason for you to start wandering around with your knickers over your jeans and a bed sheet over your shoulders :D
 

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Brilliant news!!!

Keep doing what you're doing, especially if it makes you happy :D

Of course we now want pics of you with your knickers over your trousers and a bedsheet round your shoulders...... ;) :thumbup:
I wonder what sort of knickers they'll be?! I reckon they'll be granny bloomers :D :D
 

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Discussion Starter · #9 ·
That is such amazing news :D

WELL DONE to you! I think this is definitely a good enough reason for you to start wandering around with your knickers over your jeans and a bed sheet over your shoulders :D
Brilliant news!!!

Keep doing what you're doing, especially if it makes you happy :D

Of course we now want pics of you with your knickers over your trousers and a bedsheet round your shoulders...... ;) :thumbup:
Well, obviously I'd love to provide you with one, but I'd have to get OH to take it. Knowing his thoughts on big undercrackers, he'd get excitable and try to turn the picture into a movie :laugh:

I wonder w
hat sort of knickers they'll be?! I reckon they'll be granny bloomers :D :D
Oi! :laugh:
 

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That is such amazing news :D

WELL DONE to you! I think this is definitely a good enough reason for you to start wandering around with your knickers over your jeans and a bed sheet over your shoulders :D
I think you'll find she already does that!!!! :lol:

Well done on the great news that YOU achieved hun. You deserve it for all your efforts.

 
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You shame me, Mysh. I can manage a 10 metre run, if the goal is roast spuds or chocolate - and it's gently downhill...
 

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i always knew you were superwoman and i think you're amazing, whatever that counts for.
 

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Discussion Starter · #13 ·
You shame me, Mysh. I can manage a 10 metre run, if the goal is roast spuds or chocolate - and it's gently downhill...
Heh, when I run, my thoughts are on the roast spuds, I will be enjoying at the end :) This is what my Dad said when I mailed him today, so you're not alone ;)

Good for you: noli illegitime carborundum, as the Romans never said.

I never ran 10 Km. in my life since the compulsory school cross-country, at which I cheated, having the advantage of knowledge of the terrain. However, one day we really will climb a mountain together again, before my brain is finally convinced that my bones are no longer twenty.


If anyone can work out which PF member posts in a way that makes me laugh because it's so similar to my Lancy, droll, dry Dad, I'll reward you with an actual run where I wear my undies on the outside etc :D
 

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it's probably not but i read it in the same voice i read Zaros' in.
 

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Discussion Starter · #15 ·
i always knew you were superwoman and i think you're amazing, whatever that counts for.
It counts for lots as you oughta know :)

it's probably not but i read it in the same voice i read Zaros' in.
Haha, metame wins the prize of my going running with my undies outside my pants. The very same, and I just realised when I got that mail tonight. Don't worry Zaros, if you read this, you're not a father figure, my whole family have that sense of the absurd, it makes me chuckle :D
 

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Haha, metame wins the prize of my going running with my undies outside my pants. The very same, and I just realised when I got that mail tonight. Don't worry Zaros, if you read this, you're not a father figure, my whole family have that sense of the absurd, it makes me chuckle :D
and sometimes it's good everyone has a voice in my head.
 

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You know, I had been getting quietly wound up inside when people said that sort of thing about me, knowing they were saying it because they were happy to see me looking well, but a bit frustrated that they couldn't see that I have pain, fatigue, and more every day. But today it just clicked that I should be glad to hear those things, because it means my attempts to carry on regardless are working :)
I actually thought when I was writing about Sue, that I know there are days when she is in pain, but it's the way she hasn't let it beat her that I admire. I am sure it is the same for you. :) And it must be great to know that you are doing all the right things. As for Zaros - another big fan here.:001_wub: He cracks me up! :laugh:
 
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