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Old 08-10-2008, 12:56 PM #21
sunnyday sunnyday is offline
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sunnyday sunnyday is offline
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Default finding out so many

hey, i'm finding that there are so many in my situation. I had no idea, its not good but at least i realise it isn't just happening to me and i'm not going crazy and it really isn't just in my head (well, only the lesions anyway).

I just dont get how seeing so many different neuros and still so many different dx, surely they all trained in same thing so how come not agreeing at least on some part of it? and how can it be ms one time then not the next? the symptoms sure as hell aren't gone and lesions still there!

Have to keep going and get on with life along the way.

Keep me posted, good luck to you.
Much love xx





Quote:
Originally Posted by FaithS View Post

Gazelle --

Hope you are happy w/ your f/u neuro. I've also been through the "It might not be MS after all" thing", after many years of an MS dx.

Best wishes!
~ Faith
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Old 08-10-2008, 01:09 PM #22
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Gazelle Gazelle is offline
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Gazelle Gazelle is offline
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Originally Posted by sunnyday View Post
hey, i'm finding that there are so many in my situation. I had no idea, its not good but at least i realise it isn't just happening to me and i'm not going crazy and it really isn't just in my head (well, only the lesions anyway).
We can form a poster child society for disease limbolanders! It IS nice to know you're not alone.

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Originally Posted by sunnyday View Post
I just dont get how seeing so many different neuros and still so many different dx, surely they all trained in same thing so how come not agreeing at least on some part of it? and how can it be ms one time then not the next? the symptoms sure as hell aren't gone and lesions still there!
I'm sure, but it's like trying to get someone to agree on specifically what color blue something is. Ask 10 people and you're likely to get 10 different answers.

But you're right, the sx aren't gone and I know at least 1 lesion is still there cuz at least 2 neuros saw it. Never mind the radiologists who've NEVER seen anything wrong. They're not neurologists.

What gets me is the guy that dx'd me in 2005 was an MS specialist who was recruited away by the Cleveland Clinic. He couldn't be THAT bad a neurologist then!

When he asked me what I expected out of my visit to him when I saw him in 2005 after Dr. Flip Flop kept changing his mind about everything, I told him, "Continuity. I just want someone to say something and stick with it. I'm not looking for a dx, I just need continuity." He told me that was fair.
Then BAM! He leaves the practice for the Cleveland Clinic. <sigh>
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