Getting the attention of the medical community

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Batman55
Regular Member


Date Joined Aug 2008
Total Posts : 136
   Posted 10/2/2008 4:04 AM (GMT -6)   
Is there a way to get attention for a possible "new" neurological condition?
 
Several of us on this forum are presenting with this symptom of "constant head pressure"; those who have gotten checked out by various specialists have not been helped much.  Doctors shrug their heads at this problem like it's "never been seen before."
 
Just the other day someone came up with an interesting observation that it's only a matter of time before someone with this symptom goes on a "Mystery Diagnosis" show.  While that does not sound realistic... how can the medical community become aware of this rare condition?
 
There's a lot of rare/little heard of conditions out there.. is it possible that this one has slipped through the cracks?
 
For sure, nobody has any idea how to help me.  And I live with this constantly.

Batman55
Regular Member


Date Joined Aug 2008
Total Posts : 136
   Posted 10/3/2008 3:56 AM (GMT -6)   

I'm sure somebody must have some strategy for bringing more awareness to this "rare syndrome" so many of us are suffering from.


Tom200001
New Member


Date Joined Sep 2008
Total Posts : 3
   Posted 10/3/2008 12:40 PM (GMT -6)   

Batman,

The best bet is to get to the attention of Mayo Clinic (Rochester, MN). It is hard to get their attention, but if we can have their attention we will have the best of the best working for us.  Getting an appointment is not that easy.  They have an online site where questions can be asked.

Regards

Tom

 


Batman55
Regular Member


Date Joined Aug 2008
Total Posts : 136
   Posted 10/4/2008 2:39 AM (GMT -6)   
Tom200001 said...

Batman,

The best bet is to get to the attention of Mayo Clinic (Rochester, MN). It is hard to get their attention, but if we can have their attention we will have the best of the best working for us.  Getting an appointment is not that easy.  They have an online site where questions can be asked.

Regards

Tom

 

Let me know if you make any progress with this.  I simply don't have the resources.
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