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
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
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!
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
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
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!
