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A MyLupusTeam Member asked a question 💭
Colorado Springs, CO

Does anyone have or know anything about Central Nervous System Lupus? After a blood clot on my spinal cord and 3 strokes I was diagnosed with CNS Lupus February of last year. I have never heard of anyone else having this type of Lupus.

June 22, 2019
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A MyLupusTeam Member

That is a type of SLE. Systemic lupus means that lupus attacks different parts of our body. Your doctor probably just called it that because right now you’re having trouble with your nervous system. Most of us have different manifestations of lupus. I have Vasculitis, Congestive Heart Failure, Peripheral neuropathy - to name a few.
I’m so sorry you’re having problems This is a great group to join. We all have struggles. It will give you a place to talk about your disease

June 22, 2019
A MyLupusTeam Member

I have this as well as I am having ischemic strokes even though I am on blood thinner, and have many autoimmune disorders: MCTD, Raynauds, RA, Peripheral Neuropathy, RA, Mitral Valve Prolapse, APS, and others. It is overwhelming at times.

June 24, 2019
A MyLupusTeam Member

I am starting to believe I have cns involvement as well and my rheumatologist seemed to agree last time I saw her. A lot of things make sense after learning about it. I had psychosis at the onset of my illness and I have cervical neuralgia, raynauds and when I flare I become confused and sometimes slur my words or just cry. I get shakey. I'm nauseous nearly everyday no matter what. Does any of this sound familiar?

June 22, 2019
A MyLupusTeam Member

I have CNS lupus. Mine is caused by a long lesion on the spinal cord in my neck.
It slowly progressed over the years until I became a quadriplegic. Symptoms similar to MS.

November 13, 2022

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