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Lisa
@techi

Posts: 303
Joined: Jun 18, 2017

Autoimmune disease is finally being notice

Posted by @techi, Aug 30, 2017

I just wanted to know if anyone saw the document on autoimmune encephatis Sunday. It was so informative. I had to get the book because of course you don’t hear the whole thing suzaahe went through. When l started reading it l just couldn’t believe the symptoms and the things she was going through was the same as even when they wanted to put her in a psych ward or nursing home because they couldn’t figure out what to do with her. They never seen this before what she was doing. When l was looking at the meds she was taking l was taking the same. Even now l am still taking one of them. I texted my doctor that evening before it came on to tell him to watch it. Because he really didn’t know what l was going through. I had told one time before about the encephalitis society group. Then the next day l went on youtub just to show my son a texture brush and l was surprised to see it about autoimmune encephalitis and the girl who wrote the book. I know now for sure they are trying to get this disease out to the medical community and the public, caregivers and families. When l told my doctor he should watch it because he really didn’t know what l was going through because doctors sometimes just go by other doctors diagnoses instead of reaching themselves. Now l am not saying all. So he texted me back and ask me where can he find it so he can look at on youtube. I told him and l said to him when l started reading the book it was like looking in the mirror and telling the same story. I get to see him after l come from the Mayo clinic because he doesn’t know l am going for a second opinion and when l show him my diagnoses l can’t wait to see his expression. So far as l look at what others have said it always that someone has to be an advocate for themselves. She had to go to so many neurologist until she was told by another neurologist that their was one doctor he knew could find the answer to her disease.
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REPLY

Yes l saw it before and it seems like l was walking right with her because l had the same experiences. I was told l had l had autoimmune encephalitis and my neurologist at that time assumed l had a mental issue and wanted to fall out and have seizures for attention. So that was really good to see someone else experience the same thing. And l am glad they said it’s not a mental problem it’s a disease. You can find more information and stories on the autoimmune encephalitis alliance and encephalitis society. I had to stare my doctors to those websites and the document. Also there’s a story of an attorney in Minnesota who went through autoimmune encephalitis and how doctors were saying he was mentally insane but his wife knew that wasn’t true. She was a nurse and she was also having to deal with a misdiagnosed until her friend told her about Dr.Britton at the Mayo Clinic in Minnesota. I really didn’t think a nurse and a lawyer would go through the same thing but he helped them and he’s doing fine. He still has some memory issues but he’s still practicing as an attorney. This isn’t a new diagnoses in the UN people have been dealing with encephalitis. And now there is the first encephalitis clinic at John Hopkins and l not sure if it in the world but it is definitely in the US. And the news reporter who went through it lived in NY and that’s where l grew up so some of the places she was talking about l knew where she was. And l am so glad we are learning it’s not a mental issue it a disease because people who go through it usually end up in a mental hospital or on antidepressants. When l fall out and l am unconscious and may hallucinate right away a psychiatrist come in the er room and the first thing they ask are you suicidal that’s why l try not to go to the hospital. I can’t really go to any in my state without them thinking l am suicidal. So l am so glad they are getting this out and hopefully they have an inservice or classes for the medical staff I think this might help the patient and family also. Because it is scary and something you can’t explain to others. I was doing research and only 2 doctors at the Mayo Clinic specializes in encephalitis and autoimmune encephalitis disease.

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