2008 Rare Neuroimmunologic Disorders Symposium, Neurological manifestations of lupus and other systemic rheumatologic disorders, Julius Birnbaum, MD Transverse Myelitis Association
Diagnosed with SLE after renal failure at 26, focal seizures, 4th CN palsy and now my seizures are worsening, mainly at night. Having a hell of a time getting a neuro to treat me. Hx of TIA's, actually had neuro tell me multiple TIA's impossible at my age (now 38). On Plaquenil and Imuran. Experiencing major L side weakness, blurry vision, hands going blue. At wits end.
Me too I have SLE optic neuritis and atrophy all my blood test are normal so treatment is so difficult. I had resp failure in 2014 and loss of vision and chronic new cough right before also bad headache. I was left with permanent tracheostomy from that. Now I have all these same symptoms as you guys. Neuro is basically like go away and suffer . I’m exhausted 😩 miserable everyday
Being married to a neurologist, young people can ABSOLUTELY have TIAs. Your neurologist's claims are simply flawed, and his understanding of his discipline is questionable. ... I'm so sorry you had that experience!
So how do we go about finding doctors that will do something other than wait it out or prescribe medications without a proper diagnosis? I'm exhausted and I can't search for them anymore. It seems here in utah there aren't any doctors like that. Help please?
Thankyou. Right now I have been diagnosed with sle for 25 yrs I have had kidney nephritis epilepsy sjogrens ms and now I am told I have cns lupus. I have little to no feeling in my feet but I have excruciating electric shocks through both legs, no one is telling me what to do or how to help me. I am dragging my right leg I have no strength in all limbs and I am going blind from macular degeneration. Also cushings was just diagnoised after me complaining about my face and showing these doctors photos over a three yr period. Can you please explain lupus cns and exactly what's coming , I am petrified . Thanks again regards leanne mayor Sydney Australia
+Dagbjört LH hi there I'm always happy to talk to anyone suffering as I do , I'm not happy this is how we find each other but heck the best way to stay educated is to talk to each other ... I live in Sydney Australia I am 46 have one sone and have just had my first grandchild . You can find me on Facebook not that I use it a lot these days but I would really appreciate a chat xoxo
Pls help me in in Australia and no one can help me I have brain lesions lupus pain in all my body hassimotos and thyroid disease I am 44 and feel like I'm dieing
I can suggest for neuropathy pain "nicotinamide riboside otherwise known as niagen" 100-300mg/day [not to be confused with niacin or niacinamide] . It will also give you energy and strength. About the brain lesions can't suggest anything yet, I will be trying a herbal supplement and see if it helps.
