Neurological manifestations of lupus and other systemic rheumatologic disorders

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Күн бұрын

2008 Rare Neuroimmunologic Disorders Symposium,
Neurological manifestations of lupus and other systemic rheumatologic disorders,
Julius Birnbaum, MD
Transverse Myelitis Association

Пікірлер: 16

@celtickels 11 жыл бұрын

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 7 жыл бұрын

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 5 жыл бұрын

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 4 жыл бұрын

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 Жыл бұрын

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!

@MsMOLLYKINS 9 жыл бұрын

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 8 жыл бұрын

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

@MsMOLLYKINS 8 жыл бұрын

+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 8 жыл бұрын

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

@cespo77 5 ай бұрын

How are you now?

@wearesrna 11 жыл бұрын

Please email the TMA at info@myelitis.org so we can help and join to become a member of the TMA.

@Indiah-fb2eq 3 жыл бұрын

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 3 жыл бұрын

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 3 жыл бұрын

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.