Optic Neuritis

Posted by Langold @rarelybees2889, Sep 21, 2019

Does anyone have autoimmune related Optic Nueritis?

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Ethan McConkey, Moderator | @ethanmcconkey | Sep 22, 2019

Hi @rarelybees2889 here is a research article on autoimmune optic neuritis (neuropathy) that may provide some helpful information: https://jamanetwork.com/journals/jamaophthalmology/fullarticle/263156

I'm tagging @poppymom @staffordpark @anniemaggie as they all have mentioned optic neuritis in the past and may be able to offer their support.

Back to you @rarelybees2889, have you been diagnosed with autoimmune related optic neuritis?

Lisa Lucier | @lisalucier | Sep 27, 2019

Hi, @rarelybees2889 – just wanted to check in and see how you are doing? Also wondering, like @ethanmcconkey, if you have been diagnosed with autoimmune-related optic neuritis?

Langold | @rarelybees2889 | Nov 28, 2019

Hi
Sorry its taken awhile for my response…After seeing a neurologist (autoimmune specialist) and rheme at Mayo, they do think it is for sure autoimmune related. Optic neuritis twice and my other autoimmune issue is Sjogren's Syndrome. Obviously the optic neuritis not caused by SS, but caused by "autoimmunity" according to my records.
Lots of tests and still no full answers.
I have joined one research study in Autoimmune Nuero at Mayo, and will also join a second soon in optic neuritis.
I am getting my care at Mayo now, despite not living in Minn fulltime. Rare disease is no fun.