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Paraneoplastic Syndromes?

by kla123 , Jan 05, 2008 04:08PM
Without going into ALL of the specific problems I've had over the past year (I've posted them before) I have a question about paraneoplastic syndromes.  My husband is in the military and since I have started having health problems (almost a year ago) we have lived in 3 states, so I have had no continuity of care.  Since we just moved recently in the midst of the health problems, the most recent doctors I have seen think I'm crazy.

I have been referred to a neurologist for an MS-check, but when I saw him he said his first inclination was myasthenia gravis.  However, I have no "antibodies for MG" (I don't know what test he did, but he only took some blood).  Another doctor tested me for Cushing's, but said the bloodwork was negative (I've read about urine tests and suppression tests, but those weren't done so I'm not sure what blood levels were tested).  Now, most recently I called to get an appointment with my doctor, and the nurse said to go to the hospital because I was having heart-attack symptoms, but when I did an EKG and stress test it looked fine.

My question is -- I've read that these three types of things -- lambert-eaton myasthenic syndrome, cushing's syndrome, and superior vena cava syndrome (SVCS) can actually all be related.  From my limited reading I gather they can all have something to do with lung cancer or a problem with the thymus.  If it was related to this, would there have been "myasthenia gravis antibodies" or a problem with my blood test to indicate Cushing's, or if these problems are actually paraneoplastic would they not have shown up?  And, is there any chance at all one person could have all of these syndromes, especially before an underlying condition was discovered?

The urgent care doctor said SVCS is a "pink elephant" -- you just don't see it much, but even if rare could this be possible?  Thanks for your help!  I just don't want to be referred here and there anymore if there's any chance this is connected.
Member Comments (2)

by DesperateFamily, Jan 07, 2008 04:49PM
To: klahlander
For information on Paraneoplastic Disorders send an email to pcd-l-***@****. and title it help.  Provide them with your symptoms and they can point you to a good doctor.  It is very critical that PND is diagnosed early and your chances of finding a doctor on your own that has ever treated it are slim because it is rare.  

by kla123 , Jan 08, 2008 10:13PM
To: DesperateFamily
The information e-mail address did not show up in your post.  Maybe it was blocked by medhelp -- is there a website for the same place where I can reach the e-mail address? Or maybe it would show up if you type "at" and "dot" instead of the symbols so it won't show as an e-mail address.  Thank you.
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