Neuropsychiatric Lupus

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.

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?

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.

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

Yes I see you have SLE

Doctor hasn't discussed that with me yet.

@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.

CIDP was already ruled out by my Neurologist.

Hello, I am new here but read what you wrote switch interest @twinkie23 as I was diagnosed with lupus, then years later told by a different specialist that I didn't have it, who knows?? I do not have the finances to keep going from rheumatologist to rheumatologist but the symptoms you talk of are interesting as I have the very same symptoms, numbness tingling, and severe pain in my leg which is probably sciatica but I am at the stage where I am falling and very depressed as quality of life is so bad, my husband passed away unexpectedly 3 months ago and my balance and movement are getting worse rapidly, and I don't know what to do, I am only 62 on disability pension and live in Australia. I follow your story with interest, thank you!

@yelsel I’m so sorry you’re dealing with the frustration of being told you have lupus, only to hear from another doctor that you don’t have lupus. I also experienced this many years ago when I had to switch doctors as my symptoms and bloodwork had fluctuated. The suggestion I have for you is the same that I did for myself. I went to a major medical teaching university to be tested. They took 26 vials of blood and did extensive testing as well as a complete physical exam, records review and symptom evaluation. Once they concluded that I indeed had systemic lupus it was never questioned again. Of course, I don’t know your personal situation or what teaching hospital may be available to you. I hope this gives you an idea of where to pursue a definite diagnosis. If there’s anything that I can help you with, please feel free to contact me.