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Old 01-10-2009, 10:12 AM #1
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All I can say is SORRY!
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seara (01-11-2009)
Old 01-10-2009, 12:05 PM #2
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I would still be following up with the Lyme disease possibility too.

You have migraines, diabetes, are in the "older" category, etc. . . . and all those factors 'seem' to fit with the lesions they've identified. I don't recall what your symptoms are, but it is sometimes hard for them to distinguish MS symptoms when there are other KNOWN conditions/illnesses clouding the picture.

If your symptoms are debilitating, and the cost does not prohibit another opinion at this point, I think it would be worthwhile to get one. Even if they can't identify MS as the "cause" for your difficulties, you are still suffering, and may not be able to work anyway.

Did you see one neuro years ago, or how many have you seen all up?

Cherie
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Old 01-10-2009, 04:15 PM #3
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Oh my dear Seara...do you bring back memories of me..then and now. Just wanted to tell you that I understand..more than you know.

Here is my take on this. I had to STOP thinking it was MS..even tho MRIs were suggestive.. my PCP did refer me to an MS specialist. For a short while my MS neuro thought it could be a mild case and was willing to monitor me..but not treat it. OK with me...I dont want those meds..another story.Then finally he said no its not MS.

He DID validate that "something" was definitely wrong.. neuro like..but it has no name. OK..i give up on MDs..but he did send me to another neuro in his office to find out. Now this MD got really excited thinking I had narcolepsy with cateplexy.

Again.. job changes..new insurance..no more seeking DXs or neuros...and this new PCP..said when she heard my history.. and they dont think you have MS?? And they dont think you dont have seizures??

BUT

Miracle of all miracles..she sends me to her mothers neuro out of network for me..who specializes in neuro muscular and autonomic problems..like her mother has. I am going to give him a try.

So.. as hard as this sounds.. not everything NEURO IS MS!!

Because of your migraines..which are very serious and show all kinds of changes in the brain.. mix in our American Diet of chemicals..breathing chemcials..we're seeing ALL kinds of people with neurological symptoms. There IS something wrong!! but it may not have a name like MS>!!

Many MDs do not have the guts or training to say I DO NOT KNOW WHAT IS WRONG with YOU. You do not fit into any boxes I studied!! Believe..some are good and try...but when you dont fit nicely in their diagnostic boxes...they make up stuff.. that sounds like they know.. rather than say I DO NOT KNOW> This NEURO you say IS probably still thinkking of what you told her about being invalidating.. but.. depending on her ego..not sure what she'll do about changing her attiutude.They are so lost..when they can't name it ..test it.. or write a RX for it~!!!

OK.. I said this is MY POINT of view.

Stay here please..like I do from time to time.. to ask questions.. share frustrations and GIVE back to others in the struggle.. you'll never be alone..trust me ok?

Warmly Jan

P.S. I found a guru of a nutritionist that has detoxed me from heavy metals..built up my depleted toxic deficient systems and helped A LOT!! So much so with balance and cognitive problems that my neuros send me to him when I have a flare!!! Yup..go figure.
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