Share this:

HELP!! Neurological Paraneoplastic Syndrome

Posted by @neurologicalparaneoplasticsyndrome, Nov 26, 2012

I’m writing to see if anyone else is going through this and to find resources and support. I haven’t been diagnosed yet but its suspected that I have Neurological Paraneoplastic Syndrome due in part to my being a breast and melanoma survivor.
Three months ago my symptoms started. I began to lose my night vision and it seemed to come on all of a sudden. I have since been told I have 1 nevus and an ERG showed three more ‘dots’ on my right eye as well. I have also been told that my optic nerve is pale. It is now affecting my speech, motor skills, and brain function. I can’t sleep, even on the meds they gave me 🙁
Mass Eye and Ear doctors have basically ruled out all other diseases and now we are just waiting for my blood test results to come back. The problem with that is that I have to wait 2 months before I get my results because this is so rare that only a couple labs test for it in the USA. My vision, memory, speech, and now my swallowing have all been affected. I’m scared and to be quite frank I feel myself dying.

Reply


Anonymous
@anon56837187

Posts: 46
Joined: Sep 15, 2012
Posted by @anon56837187, Nov 28, 2012

What was the result of the CT scan of your brain?

Posted by @neurologicalparaneoplasticsyndrome, Nov 28, 2012

It was normal as well as 2 brain mri’s.


Anonymous
@anon56837187

Posts: 46
Joined: Sep 15, 2012
Posted by @anon56837187, Nov 30, 2012

It appears to be nerve damages, but what causes the nerve damages? Can this be autoimmune disorder? Are you taking anti-inflammatory medication? Did your blood test confirmed with NPS?


Alex Simon
@alexsimon

Posts: 179
Joined: Feb 08, 2011
Posted by @alexsimon, Dec 12, 2012

Hello –
Mayo CLinic has some information availble here on paraneoplastic syndrome: http://www.mayoclinic.com/health/paraneoplastic-syndromes/DS00840.

Also, if you are interested in requesting an appointment to see a Mayo Clinic physician, please click on the request an appointment button on the upper right hand corner of your screen.


Alex Simon
@alexsimon

Posts: 179
Joined: Feb 08, 2011
Posted by @alexsimon, Dec 12, 2012

Also – there is a post by By pame­lain­fran­ce on a similar topic.


rheanna
@rheanna

Posts: 1
Joined: Jan 06, 2013
Posted by @rheanna, Jan 6, 2013

My boyfriend is going through this as we speak. We are waiting in test results from the mayo clinic (MN) although his doctors feel it may also be in part to his chemotherapy. (Abraxine)

Please login or register to post a reply.