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Neuro update....
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lepman posted:
Well ....I am deffinatly back to square one now ...Got a new appointment and thought I was seeing a real doctor turned out he was an inturn and told me he had to show my test results to his new Head resident....

I don't want to mention names...but guess what ....it was the same doctor that I got at the V.A. hospital....that told me I have Migraine with out headache. and I must be willing this to happen...and that my symptoms were highly entertainning...

I told him that if he were to get her involved again that I would not get anywhere with her and I would have no choice but to leave....He looked over my test results again and agreed that they show that something is causing my symptoms to progress and is continually showing degeneration for inner ear function for balance.

Now 100 % loss in right ear and 65 % loss in left....Remember I can hear just fine ...Just no function for balance....He left the room and low and behold he went directly to her and I overherd thier conversation in the hallway because he left the door open....

She laughed out loud and told him she remembered me and told him to ask about my head bobbleing when I try to find center posistion after I move it....then he said," I didn't notice it before, Thats very entertainning"....I knew that this was going nowhere and told him that....So I told him that if there were no other doctors that could help I had to leave....

I then remembered about the Ataxia test that I am still waitting for the results from and asked him if the head bobbling could be related to it...He said No...So I left and when I got home I looked it up...and yes I found about six documented cases ,Progressive Ataxia with Palatal tremmor....Hummm...I believe that the Neurology Doctor I was seeing that ordered this test may be on the right track...

I also remember her saying that if left untreated it can advane to Chronic or even progressive stage.The tests for this are very expensive so, she is only testing for one type...and not all the 47 differant types can be tetsed for...Currently the cost to have the ones that can be tested is about 8,000.00....the one I am haveing done is 1,100.00....

what really bites is that it takes 8 weeks before tha results come back...My biggest worry now is only one form of Ataxia is being tested for and if it shows neg. for the one she ordered, now who do I see?.....And which form do I have ?, The inherited one or the one with the underlying cause one....?

I know the Neuro that ordered the test for Ataxia told me that because of the long distance between thier hospital and where I live she felt that any follow ups could be done with my currant Neuro.....But I told him what happened he stated that he thinks I should stay with the migraine without headache one...No way....

Sence when is a patients symptoms Highly entertainning? I told him and I asked if he could referr me to another doctor who knows something about Ataxia.....He basically said he has exhausted his options and said good luck ....Wow...now I'm really back to square one...with just a glimmmer of hope that this last test will show something....

But even if the test results come back pos. or neg. I once again have no doctor to goto.....What a rollercoaster ride.......
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hackwriter responded:
lepman,

A rollercoaster ride, indeed! How frustrating. Do you still have the option of seeing the long-distance neuro who ordered the ataxia test?

Kim
 
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readyfordx responded:
Hey Lepman: The way you are being treated angers me..you have rights and you should turn that doctor in to the medical board in the state you are in..You mentioned that you go to the VA and it angers me even more that you gave your time for your country and you get treated this way.

Stand up for yourself..plese report her to the medical board..the medical board could possibly also help you find a good neuro...I have worked in the medical field for over 30 years and I don't know if I have ever been this mad over a medical situation. YOU HAVE RIGHTS and you deserve to be treated with respect..

You aren't in Alabama, are you?

Good luck to you..
 
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lepman replied to hackwriter's response:
I'm not sure ...but I hope so ...gotta wait for the results then ask....Still a long wait...But at least it's a door that remaines open ...or at least I hope so...
 
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lepman replied to readyfordx's response:
No ...I don't live in Alabama...and your wrong about haveing rights at the V.A. hospital....and the last time I stood up at the V.A. both me and my wife were escourted out of there viea armed police escourt....and told never to return ....I know it's not right but thats just the way it is...Really...I have the poliece report from that day and I still don't know why that was needed to be done to us...So I don't even have the privelage to go to the V.A. anymore...
 
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dawnrene38 replied to lepman's response:
Lepman,
I am sorry to hear how you are being treated. But to let you know that you are not alone! I am Active Duty and I am being treated like garbage. I truely know your fustration and I can empathize with you.
Keep your chin up and keep pressing forward. There will be a light at the end of the tunnel! At least that is what i tell myself!
Have a blessed day.


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