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i have neuro sjogrens too

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Old 04-14-2009, 04:17 PM   #1
Join Date: Apr 2009
Location: BC, Canada
Posts: 71
surreygal HB User
Smile i have neuro sjogrens too

Hi there. I read a post about a person who was wondering if anyone else has CNS involved or neurological involvement of SS. I do. I also have vasculitic involvement. In fact, today my GP has ordered a CT brain scan to see what's up because I seem to have alot of signs/symptoms of cererbal vasculitis. I have had several brain MRIs that show "ubo's"-unidentified bright objects, so I know I have brain lesions but they seem pretty static, which refuted my first diagnosis of M.S. I get all kinds of weird symptoms: foot dragging, urinary urgency, "holes" in my vision, optic and cerebral migraines, numbness to extremeties and face, droopy right eyelid etc. The worst symptoms include acute and violent nausea (thank goodness for Stemetil!) and crippling fatigue. I'm not on any SS medication because I'm not a candidate for Plaquenil due to the visual disturbances I get frequently--Plaquenil shows toxic with visual disturbances so mine would go undetected. SS isn't a fun disease, but I'm determined to live my life as best I can. I cycled 62 kilometers in the rain on Sunday, and as soon as this headache passes, I will return to work and it will be on my bicycle! Best wishes to my fellow SS cohorts. Take care.

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Old 04-14-2009, 05:12 PM   #2
Join Date: May 2008
Location: Middletown, NY, USA
Posts: 61
Babs659 HB User
Re: i have neuro sjogrens too

Hi, there. Do you get lightheaded or dizzy?

Old 04-15-2009, 04:31 PM   #3
Join Date: Apr 2009
Location: BC, Canada
Posts: 71
surreygal HB User
Re: i have neuro sjogrens too

Hi back at you! Yes, I suffer dizziness and vertigo frequently. Take care.

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