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Dcame, please find the best lupus specialty center near you, as you want doctors who are very knowledgeable and experienced in lupus management. 😘
Yes @A MyLupusTeam Member I have NPSLE. As a kid I already had confusion, absences, couldn't focus, forgot things, had difficulty getting around, now as an adult I notice it's getting worse😞I have acute paralysis, had some chronic issues but most resolved after a while. I found out my dsDNA -antibodies are positive in the thirties, so I'm not surprised I had to struggle with memory issues, aphasia, amnesia (yes) and other fun stuff🤪I have spasms of my blood vessels all over my body, confusion, brain fog, head-aches from hell are recurrent ailments I have to deal with. My Reverend brother is still urging me to get other medication, he believes I'm undermedicated have been like that for years. I can't give up, my Fuzzies/ Children😍❤️🤩need me and I like spending time with them. Psychosis was wild, I heard, believed, thought and saw things that were truly not real, I was able to persuade myself it's not real, but I was very very sick and alone except for the presence of God. He took care of my baby and me, we survived all thanks goes to God. Thank you my loving caring God, thank you, you were there when I wasn't able to call for help at first. Be persistent Love, don't give up, it's real, the condition is serious and it requires treatment. May you receive the treatment you need, in Jesus's name I pray. Amen🙏🏽
Please let me know what your new doctors say. I hope that you find a good teaching hospital in your new city/state.💜
I'm so sorry to hear that @A MyLupusTeam Member! Thank you for sharing, and I wish you all the best as well 💜!! I’ve been dealing with some new symptoms lately like mood swings, memory issues, headaches, hallucinations, sleep problems, and episodes of sudden paralysis and pain. I’ve also had a few TIAs in the past. After doing some research, I came across information about neuropsychiatric lupus, which really resonated with what I’ve been experiencing. I was diagnosed with lupus in 2021, but these symptoms are newer (I had the TIAs and the paralyses for years now though). I recently moved and am looking for a new rheumatologist and neurologist, hoping to finally get some answers and support soon.
Yes, I had it when I was diagnosed. I experienced confusion, forgetfulness, psychosis, and inflammation around my brain. My rheumatologist referred me to a psychiatrist and a neurologist. He also had me on a high dosage of prednisone. Sadly, I only know this from what my father told me and reading my records. That first year was difficult for me. Hopefully, it is treated better than it was 37 years ago. Everyone has different symptoms that may not be as severe as my case. I wish you all the best. 💜
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