Recent diagnoses

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mrsbubulz
Regular Member


Date Joined Jun 2011
Total Posts : 53
   Posted 9/16/2011 12:14 PM (GMT -6)   
Hi all,

2 weeks ago I was diagnosed with a Multiple connective tissue disorder...my rheumy wants to do a lumbar puncture to confirm lupus but has graciously given me 4 weeks off from test after a marathon of them last month...

She and a neurologist seem to think that my main problem with the disease other than the skin involvement (30 minutes in the sun and I had a rash that was just incredible all over my body and was confirmed as vasculitus with a biopsy) is that it is attacking my central nervous system.

I have been having seizures which have increased over time although now I am on an anti seizure medication in addition to the Plaquenil and some anti inflammatories I cannot remember the name too.

Does anyone else here have the cns involvement. My reading has led me to believe that the disease mostly effects the kidneys (mine are fine) or the pulmonary system however sometimes it can effect the CNS, but it is very uncommon.

Do you have any advice? I am grateful that we know what is going on, but I must admit the diagnoses frightens me.

Thank you in advance!

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 9/16/2011 3:58 PM (GMT -6)   
Please check out the link in my signature about diagnosing Lupus. I have never heard of any using a Lumbar Puncture as a Lupus test.

I admit I personally have an irrational fear of Lumbar Puncture, but I still have to advise a second opinion -- Lupus is usually diagnosed by symptoms and ANA (blood) test. Although it is true that sometimes a Lumbar Puncture is used to decide between Lupus and MS, I would think that a head MRI would be performed first.

I have had major cognitive involvement, documented by neurophsych testing. I had great improvement with Cellcept. However, it sounds like your situation is quite different.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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