Neuropsychiatric Lupus

Posted by terriann @twinkie23, May 17 8:26pm

My rheumatologist told me yesterday that my aggressive SLE is called Neuropsychiatric Lupus, since it is affecting my nervous system. The past few months I have developed neuropathy in my legs, feet and recently hands. I am having trouble walking now, running into things and have taken a couple falls and near falls. He originally thought it was MS but an mri showed no lesions in my brain or spine. He’s ordering IVIG soon. Does anyone else have experience in this type of aggressive Lupus?

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hello2 | @hello2 | May 18 5:59am

Oh my goodness I feel your pain. I have nerve damage all over my entire body and suffer from the exact same symptoms as you do, but I was never told I have what you have. I was just told that the Lupus damaged my nerves.

Let me know what they are doing for you and I wish you all the best.
Good Luck.

John, Volunteer Mentor | @johnbishop | May 18 6:46am

Hello @twinkie23, I know it must be difficult for you now with your recent symptoms and problems walking. I found another member @remybelle who mentioned being diagnosed with Neuropsychiatric Lupus and started the following discussion that you might find helpful to learn what others have shared.

--- Movement disorder: https://connect.mayoclinic.org/discussion/movement-disorder/

Do you know how soon you will start your IVIG treatment?

slkanowitz | @slkanowitz | May 19 12:37am

I have SLE as well, but I highly recommend you see a neurologist with the idea of ruling out CIDP. It’s a chronic inflammatory demyelinating polyneuropathy that causes peripheral neuropathy and muscle weakness, balance problems, falls. It is similar in pathology to MS. MS affects the brain and spinal cord whereas CIDP affects the peripheral nerves that branch off the brain and spinal cord. It’s progressive and causes serious disabilities if not treated early and aggressively. My rheumatologist didn’t recognize it and I spent a decade getting worse to the point of having to use a wheelchair before I was diagnosed with CIDP. Please get a second opinion from a neurologist who is a neuromuscular specialist.

hello2 | @hello2 | May 19 6:54am

Thank you for your input. Do you have Lupus as well?

hello2 | @hello2 | May 19 6:55am

In reply to @hello2 "Thank you for your input. Do you have Lupus as well?" + (show)

Yes I see you have SLE

hello2 | @hello2 | May 19 6:54pm

In reply to @johnbishop "Hello @twinkie23, I know it must be difficult for you now with your recent symptoms and..." + (show)

Doctor hasn't discussed that with me yet.

dlydailyhope | @dlydailyhope | May 20 6:20am

@terriann
I never heard about neuropsychiatric SLE/Lupus. I will talk to my new rheumatologist about this and also about CIDP with my new neurologist. My mom had Lupus/SLE, RA, fibromyalgia, Hashimoto’s, heart disease, diabetes, etc. I have various autoantibodies in bloodwork and many CNS/PNS worsening symptoms. I may also talk to my neurologist about arachnoiditis which I just learned about, too. Thanks and good luck to you in getting doctors who care to help you get answers and options for treatment that help improve your quality of life.

terriann | @twinkie23 | May 20 8:21am

In reply to @slkanowitz "I have SLE as well, but I highly recommend you see a neurologist with the idea..." + (show)

CIDP was already ruled out by my Neurologist.

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