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3les54 (@3les54)

Autoimmune mystery

Autoimmune Diseases | Last Active: Mar 19, 2020 | Replies (73)

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@3les54

Thanks to everyone for the responses. As of yesterday our HMO has drawn in the past 5 weeks 94 vials of blood for testing, CTs/MRIs/xrays/ultrasounds on every part of her anatomy. A large ovarian cyst of a common type was discovered, not related to her current situation, but more importantly Infectious Disease Dept tested her for cytomegalovirus (cmv). She tested positive. A follow up confirmation test was done with results due by Monday or Tuesday. If CMV isn’t the problem, we will go to USC in Los Angeles, or Mayo, for help. Getting to and from the hospital exhausts her.

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Replies to "Thanks to everyone for the responses. As of yesterday our HMO has drawn in the past..."

Can I ask you what kind of specialist your wife saw to find she has CMS? Who would you see at USC.
I have the same symptoms, not that severe. Saw hematologist and Rhematologist, none know what's wrong, except blood tests every six months. I don't know if they do care or not. It's been almost two years and think I should find new good doctors who care. I do have HMO but in Los Angeles the medical group or network are the one who control every thing. I'm now ready to go to outside the insurance and pay my own. I have to control my own health not some medical groups who only care about $$$

Has your wife been tested for autoimmune encephalitis? Sounds like it might be paraneoplastic and I’ve heard many people got AE after a flu shots, but the ovarian cyst is the main cause. Many times autoimmune encephalitis is connected to an ovarian cyst. She should have the autoimmune blood panel and also a lumbar puncture. Her local neurologist an order the blood panel and then send it to Mayo in Rochester for testing. Please speak to a doctor at a hospital that is familiar with this, so many doctors and hospitals are not. Lots of info online. Youtube has lots of information about it. Let us know how she is doing.