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Ataxia Test Update...
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lepman posted:
I finally Got the results back from the Ataxia test....And I was only tested for one of the 47 differant types of it.. and it came back negitive...and I asked the Doctor where do we go from here...I was told that there was nothing nore that they could do for me.. and that I was no longer a patient of theirs.

I said .. So you are just dropping me...She said yes and good luck...I said to her where dose that leave me ....who do I see now....She told me to go back to my G/P....

So I called my G/P and saw him...He explained to me that the reason that I have been going through so many tests was to look for things that could be treated ...and Obveously your problem is not and Unfortuantly your problem is most likely Brain or brain stem related problem.

And Unfrotuantly there is alot about the brain we don't know about...So I asked him....So I'm just suposed to accept that this is going to be my new nromal...that there is nothing they can do for me..and that there is no one out there who could figure this out...I told him I need to know what I'm dealing with here...that this is not normal and has been going on way too long now and it's getting worse not better.

He only said.. Yes.. I can see that you have gotton much worse sence we last met....I said look ...Not knowing what it is is bad enough and dealing with this every day and not knowing where I'll be with this down the road is not very appealing either...I told him that I need to get a grip on this thing and know what it is that I am dealing with so I can deal with it better...

He said that he would try to get an appointment with Mayo clinic and would call me when he found out anything....Maybe I should do just like the Doctors and just give up on trying to find out what this is and just concentrate on my everyday struggels and figure out new ways to adapt to this better....After all ..it's easier just to give up is it not?
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readyfordx responded:
Hey Lepman, No don't give up..just concentrate on finding you a good neuro who specializes in MS or like me I am seeing a immunologists/rheumatologists who maybe will be able to help me. I have an appt in June, the first available, and I am looking forward to finding some answers.

Don't give up, you are your strongest advocate, and if you give up so will everyone else, talke to your GP and get his/her help in finding you somewhere to go where they will listen and believe in you.

I remember you from before but I don't remember if you ahve had MRI, spinal tap, EEG, etc..if not, you need these tests.
Just don't give up..find you somewhere to go..get on the internet if you have to and find a specialist close to you, go the Mayo Clinic, do something..You are not alone, I am going through some of the same and so are others.

Good luck and God Bless...

Judy
 
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swampster1952 responded:
Hello Lepman,

You do not need your doctor to make an appointment with the mayo clinic. I made my own appt. with the mayo clinic in Scottsdale, AZ. myself.

This was 12 years ago so maybe things have changed since then. Give them a call and see what they say.

Dave
 
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lepman replied to swampster1952's response:
Mayo said no to an appointment.....


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