Neurological manifestations of lupus and other systemic rheumatologic disorders

[@celtickels]

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?

[@LadyJancine]

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.

[@godschild9528]

Omgosh so sorry, my daughter same stuff and had heart attack and is only 21 can't find a good Dr she suffers so much everyday😓

[@hummingbirdenthusiast1481]

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

[@MystikBlue5]

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!

[@onefabknitternz]

​@@MystikBlue5would you be willing to hear my story and pass it in to your husband to comment on ? I have obvious major neuro issues everyone assumes I have ms,especially due to spasticity,clonus ans uthoffs phenomenon. I have recored multiple examples of my uthoffs ,I'd love him to view them and give his opinion.i also have hypermobility which the neuro ssis would go away with help of a psychologist....yep.

[@dragonfly2117]

Thank You Sir ☹️🥺😢 i am tierd and i was always a wounded warrior, but now is losing control.

[@MsMOLLYKINS]

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

[@dagbjortlh7146]

Hi, I have CNS Sjogrens with lesions in my brain and many symptoms, so if you wanna talk, let me know.

[@MsMOLLYKINS]

+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

[@dagbjortlh7146]

I did not find you on Facebook but this is mine facebook.com/Dagbjort.Lara :)

[@cespo77]

How are you now?

[@noneyabusiness9441]

I have autoimmune disease with Lupus that caused chronic ITP..I need help

[@wearesrna]

Hello, please email us at [e-mail] and we may be able to direct you to resources that may help.

[@wearesrna]

Please email the TMA at [e-mail] so we can help and join to become a member of the TMA.

[@Indiah-fb2eq]

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

[@wearesrna]

Hello, please become a member of SRNA to get in contact with us. Membership is completely free. You can join here: wearesrna.org/join/

[@melissahadjitheophanous7621]

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.