Misdiagnosed for 8 years...now I have cns lupus

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Trish38
New Member


Date Joined Jul 2017
Total Posts : 2
   Posted 7/19/2017 9:06 PM (GMT -6)   
I was diagnosed with multiple sclerosis in 2008, I was recently diagnosed with CNS lupus within a positive ANA score of 1280...this actually finally makes sense, MS missed many of my symptoms. My labs came back stating that I have unidentified florescence pattern noted on cerebellum and hippocampus substrate, and staining of hep2 cells suggest nuclear non-neuronal specific antibodies are present. I can't figure out if this means cancer or is just part of the CNS involvement. Can anyone shed some light? I don't see my rheumatologist to go over this until August 7, and everything on the Internet is too confusing for me.

Post Edited (Trish38) : 7/19/2017 10:14:08 PM (GMT-6)


Diamond20_UK
Regular Member


Date Joined Jul 2011
Total Posts : 60
   Posted 7/20/2017 5:15 AM (GMT -6)   
Hello Trish,

Join the club on being misdiagnosed but mine was with other issues.

Your lab results which you'll understand better when you see your consultant, as you need to fire questions now having CNS plus you'll need to to see a neuro specialist having nerve involvement.

Those results mean a search in your blood to see what else is found with your CNS regarding your antibodies and what degree your CNS is at, as the link states below.

www.birmingham.ac.uk/facilities/clinical-immunology-services/autoimmunity/hep-2-image-library/ana.aspx

I'm adding a link regarding CNS which explains in more detail.

www.resources.lupus.org/entry/nervous-system

Terry
Diagnosed with MCTD (Mixed connective tissue disease)

Lupus SLE/SCLE/Secondary Sjogren’s syndrome/Raynaud's phenomenon/Scleroderma
Antiphospholipid Syndrome/Peripheral neuropathy/Muscle Atrophy/COPD/Hypothyroidism
Chronic IBS/Epilepsy/Osteoarthritis (Bipolar-Manic depression-OCD)

Trish38
New Member


Date Joined Jul 2017
Total Posts : 2
   Posted 7/25/2017 6:18 PM (GMT -6)   
Thank you so much for your reply. I didn't see it until today because I requested and email when there was a response. I'll check daily from now on.
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