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Thread: Going to Mayo

  1. #11
    Distinguished Community Member Sunshine's Avatar
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    Thank you to all. The MS neuro is still on staff, but they assigned me a neuromuscular neurologist. Hopefully won’t see the MS doc again since I figure she will stand by her original opinion in 2004.

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  3. #12
    Distinguished Community Member Sunshine's Avatar
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    Made it to JAX. Appts start tomorrow.

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  5. #13
    Distinguished Community Member Howie's Avatar
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    Cool

    Good luck, and get some rest.

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  7. #14
    Distinguished Community Member SuzE-Q's Avatar
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    Good luck at Mayo, Sunshine!

    Hope you get some helpful answers!
    Please Note that my posts may have been arbitrarily altered by a Moderator and may not reflect my original content.

    Per Mike Weins: "...the admin/mod team doesn't have to provide a forewarning/warning/mention about altering a members post. It doesn't matter if they fix a link, remove a link, fix a typo, or whatever...."

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  9. #15
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    How is it going, Sunshine? Home tomorrow?

    ANN
    There comes a time when silence is betrayal.- MLK

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  11. #16
    Distinguished Community Member Sunshine's Avatar
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    The trip to Mayo was exhausting and expensive and the eval will finish in June. I am underwhelmed so far.

    The neuro did some painful electric tests, and an expensive useless consult with a paraprofessional that Medicare won’t cover,

    The hard EMG is in two months. I have to be off muscle relaxants for it. I will talk to local neuro as I am not sure I should do that. The Mayo doc said if I go into withdrawal, by all means take the Baclofen. i.e, racing heart, profuse sweating, etc. GEESH. He said if I spasm. Just put up with it. Now these are not ordinary spasms. Way worse than childbirth

    . Started off with exam, no history. Later in day was to take a history but said he didn’t need it as it was in my chart from the 2004 eval and my current local neuro notes. History is so important and one can learn a lot from it by asking your own questions IMO.

    Online I see that the Mayo GAD65 is also abnormally high. Will be interesting to see his comment on it.

    They have you sign at most appts that you will pay if Medicare doesn’t, and that Medicare might not pay.but no one can tell you anything more other than the price if they don’t. If they don’t, I am already going to be dinged for 3K.

    I have another call into billing. No one seems to be able to give me a procedure code for it to check with Medicare.

    I am waiting for the Mayo to say, “it’s just stress”?

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  13. #17
    Distinguished Community Member agate's Avatar
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    Mayo might very well find that you're all stressed out after going through all of the rigamarole about billing and what Medicare might or might not cover.

    You have access to the Mayo doc, right? Or to someone in his/her office? I hope you're explaining to them how difficult it will be for you to go off your meds just for the EMG test. I think I'd want to know just what they're hoping to find out by doing that test and how necessary it is. Maybe it's one of those routine tests that they'll agree you can skip if it's going to cause you problems like extremely painful spasms. Or you could just opt to skip the test?

    I'm concerned when a doctor seems to have paid no attention to my history but that seems to be the way things are being done, increasingly. I realize that doctors are very pressed for time but I'd feel better about any care I was getting if I knew that the doctor at least referred to my file to find out a few things about the kinds of problems I've had in the past and what was done about them.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  15. #18
    Distinguished Community Member Sunshine's Avatar
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    He read my file later in day. But asked me minimal about history and nada about symptoms.

    He said The EMG is a necessary test. If it has to be that way, he said he could do it on my muscle relaxer‘s but that it might mask the findings. He would rather see me spasm horribly in pain and do it on no muscle relaxants,He did say, however, that if I went into withdrawal from back often that I should take it immediately. GEez.

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  17. #19
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    I was hoping for so much more and better, Sunshine. Sorry. Rest up. Maybe local is better in your case.

    ANN
    There comes a time when silence is betrayal.- MLK

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  19. #20
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by stillstANNding View Post
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    I was hoping for so much more and better, Sunshine. Sorry. Rest up. Maybe local is better in your case.

    ANN
    I have consulted with 3 outside Doctors about my situation. My wonderful neuro sent me to 2 of them and I went to consult with the head of neurology at a big hospital. Of the 3 I saw, two of them had not read the materials my neuro had sent. They were both scrambling to skim the material to find out why a I was even there. The third one was Timothy Vollmer who was spectacular and consulted closely on my case.

    My local neurologist was the best one I could have had. However he was on the faculty at Tufts and was a researcher too. But he practiced here in Springfield MA. So, you are in a situation when you are damned if you do and damned if you donít. I think I would always opt to get second opinions. But I am so sorry it was so hard for you.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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