Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 07-31-2012, 12:21 AM #1
zebus zebus is offline
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Join Date: Dec 2011
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zebus zebus is offline
Junior Member
 
Join Date: Dec 2011
Posts: 18
10 yr Member
Default I'm hopeless, finally saying screw it and flying out to Johns Hopkins

I saw Johns Hopkins mentioned several times on this forum, and I know they are one of the top neurology clinics in the world.

Basically I've been suffering with thoracic outlet like symptoms for over six months now, and I'm no where near a diagnosis. I live in Oklahome which is apparently the idiot capital of the world, and so far all I've established in all this time is it's not carpal tunnel and its not a C-spine issue, talk about pathetic. And now I'm at a standstill, they haven't even thought of anything else to test in months.

So at this point I basically said screw it. I looked up the best clinic in the US that would accept a self referral, which I decided was Johns Hopkins. And I'm going there, in fact, my appointment is two days away.

Maybe I've just been conditioned to expect the worst by my doctors here. But now that it's almost time to leave, I'm already worrying that I'm not going to get anything figured out, and come home empty handed, continuing to struggle with this problem that is driving my life into the ground.

Has anyone else been diagnosed at Johns Hopkins? Or heard of someone that has? I'm not talking about treatment, I'm not even to that stage yet, I'm just trying to figure out what's wrong with me, which I'm 99% sure is TOS, I just can't find a doctor that even knows what that is.

I'm going to their peripheral nerve clinic, which upon reading about, seems like it's more focused with neuromuscular things like ALS than thoracic outlet syndrome (I can't even find a mention of it). So while they might be the king's of treating it, I'm wondering if they will be able to help me in diagnosing so I can leave for my trip with at least a little hope.

One thing that seems kinda weird.. is evidently their workups are a one day thing, I'm scheduled to come at 2:30 and was told I could make plans to leave out after that. Whereas Mayo is like a 4+ day process.. starting to think I might be wasting my time and money with this venture.. although at this point I couldn't put a price on getting fixed.
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