I received some news yesterday, and while leaving me feeling a little
scared, it was also fantastic to hear. The double edged sword.
Back in 2000, it was an optician who made my GP finally sit up and take notice that, as I'd previously tried telling him, there was something wrong with me. It was thanks to a simple eye test that I began what would become the very long road to an official diagnosis of Multiple Sclerosis.
In 2006/2007 on my t'other Blog I posted about times when I was particularly unwell with the above.. My vision, as well as the acute vertigo/dizziness have been my primary symptoms and they became loads worse thoughout last year.
It has been very frustrating because my
symptoms have been impossible to describe. The best description I've ever been
able to give is that I feel like a blind woman. Although I *can* see, I can't
see. I know, it's confusing and to say it's weird is an understatement.
Then, yesterday, everything became clear. The wonderful optician picked
up glaucoma. He also related to my definitions of the symptoms and explained why no other
medical professional could. There isn't any description! What's more,
only an expert in the field of vision can interpret the signs - and these don't
show up on an MRI scan. Suddenly, ignorance from other 'professionals'
no longer mattered because I'd found somebody who UNDERSTOOD everything.
I feel so blessed. I am no longer alone in the medical world. Somebody has had
their eyes opened to the truth (thank you, God). I am now waiting for the
appointment to come through for the hospital ophthamologist. Now is the time
when I wish I could afford to go private. The thing that scares me the most is
the thought of how long it will take on the NHS. So long as I'm seen in the
next 2-3 months it'll be okay.
The worst bit that's only now sinking in is that the MS has already
damaged an optic nerve and this is irreversible. I've been referred to
the specialists and I'm hopeful that any further damage will be able to be
prevented. I guess, the scariest thought is that the MS might in the
future continue to damage my optic nerves (optic neuritis), and if this
happens... well, I don't want to go there right now.
But, whatever happens in the future, I am thrilled that Gray and I are now
embracing the writing life. We both live for our writing, and now prioritise
our 'work' over EVERYTHING else (not withstanding serious family emergencies,
of course). Watch this space, because in the future we are going to be
attending some exciting (to us) writing-related events - I can't wait!
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Sue I hope you get an
Sue I hope you get an appointment very soon. It must be a relief to have found someone experienced enough to be able to diagnose the problem before things got worse.
Take care,
Chris.
are they sure
its MS? I was reading somethng recently where some women were diagonsed as having MS by mistake
Aparently they they drank alot of diet Coke or other things that contained Asparatame (nutra sweetm Equal), and it it caused them to have MS type symptoms. But once they stoped using that stuff, the symptoms went away.
Terri
Got Books?
oh (((((Sue))))) .....
YES! .... I get it! ..... it's truly a wonderful thing to finally have just ONE Medical professional truly UNDERSTAND ... and isn't it amazing it's not your main stream physcian but the specialist one rarely ever sees?
I DO understand ... I was diagnosed with System Lupus Erthymatosis back in August 1995 ... but I'd been having symptoms for years .... when in 1993 I got a very bad sunburn that seemed to "recur" I finally ignored by GP and found my own "specialist" ... he's the director of Dermatology at a Toronto teaching hospital .... one look, after years of others looking, and he just knew ..... gave me the bad news ... "it's uncurable, possibly fatal but in this day and age is treatable and hopefully controllable" ... because of his insight, I was finally properly diagnosed before further internal organ damage could occur .... I do have some brain lessions and they are watching my kidneys closing
(((Sue))) I'll be thinking of you and I certainly do hope that you get seen very soon ..... I know how scarey it is when it's your eyesight ..... I had to stop taking one of my lupus meds because of retinal scarring
Your elation at finally being understood really touched me ..... though the news isn't great, it's finally having validation! .... I'm so glad you've found that!
(((Hugs)))
~~ KatherineT ~~ I'm a Harlequin Addict, and I'm proud of it!
~~ Quiet Canadians ~ 2008 Book Challenge Blog
Thanks!
Chris M, thanks for leaving a comment - yes, the relief is HUGE.
Terri, yes they are sure - I too have heard about some people being diagnosed by mistake. This is the reason why it can often take years to get a diagnosis in the UK, and some people aren't given it at all, just in case. It's very interesting to hear you mention about the aspartame - it was reported over here a while back, but it seems that many have chosen to ignore it. :-/ Thanks for taking the time to leave a comment.
Hi Katherine, (((hugs))) to you too. I'm sorry to hear that you have Lupus - this was one of the conditions I was tested for back in 2000. It's good to hear that it's treatable and controllable, but I'm sorry that it's another of those 'uncurable' conditions. (((hugs)))
It takes an awful lot of strength to search for a medical professional who listens and understands, especially when it's usually at a time when you're feeling ill. I've lost count of how many times I've needed to change GPs. I even 'sacked' my Neurologist a few months ago, but I'm currently too peeved to try to find another one. It makes me so mad when they 'see' damage that's being done, but refuse to acknowledge it or get further specialists involved. While a diagnosis of MS was eventually a relief, I've discovered that once you have it, the medical professionals seem to give up on you.
I actually had a phone call from my GP's surgery yesterday - I have an appointment in 3 wks for an eye clinic they hold at the surgery, and then they'll decide whether to refer me to the hospital (which the optician has already told me is important that I have). I'm building my strength to fight my corner when I see them *sigh* don't we have enough to cope with?
Anyway, apologies for my whinging! I'm now going off to lose myself in my characters followed by those written by the truly wonderful Harlequin authors.
Keeping you in my thoughts and prayers. Thanks for the hugs.
Sue
xx
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