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Lisa
@techi

Posts: 303
Joined: Jun 18, 2017

Autoimmune encephalitis along journey of misdiagnoses

Posted by @techi, Nov 23, 2017

Today it’s thanksgiving and l am so greatful that God is showing me so much about my illness. I have been to two autoimmune doctors one at home and l was told l have a positive Ana and was tested twice and l was told l had a positive Ana. That was all no other answers about what that even meant. I went to the Mayo Clinic and saw a rheumontologist and she ordered several test and the neurologist also said l had a positive Ana. Then she told me to cancel my appoint with the rheumatologist. Then she told me my previous neurologist didn’t look at my diagnoses where it said autoimmune encephalitis. Now my gastenerologist knew because he had me to go to the rheumatologist without me knowing until they called me about an appointment. When l was seen by the neurologist at the Mayo Clinic l suspected she didn’t know about autoimmune encephalitis because she said that my behavior was the residual of autoimmune encephalitis. Well l looked up and found out there was only two doctors at the Mayo Clinic who specializes in autoimmune encephalitis disease. I know God was with me because l did my research and found the autoimmune encephalitis alliance. This morning at 3am l was looking at my email and l saw a message from the autoimmune encephalitis alliance and they were talking about the seizure medicines l was taking and you shouldn’t be taking. I stopped taking my seizure meds about 2 months ago because l was told l didn’t have seizures when l looked at it it was telling about seizures and how patients are usually give psychiatric meds. When l was taking my psychiatric meds until 2014 because l was allergic and the doctors said it was autoimmune encephalitis even my general practice doctor didn’t read my chart. Since then l came off so many meds and now my memory is as sharp as before l had encephalitisthe first time. I can remember people’s names who l haven’t seen for years. Now my sister is having memory problems and l sometimes have to finish her sentences when she pauses to find the right words to say. I am able to spell words that l couldn’t even remember and l was an excellent speller before but now l am having headaches and that wasn’t a symptom l always had before. But they talk about headaches with autoimmune encephalitis. Where some people will develop so her where l live there is only one doctor who specializes in autoimmune encephalitis disease and her reviews are horrible so now l have to.travel to another state to get the help l need. And encephalitis was a disease that other countries knew about before the doctors in the U.S. So now l am writing a book about my experience that l have been living with and how l was misdiagnosed for years and how without the Lord l wouldn’t have been here today because an autoimmune disease is so hard to diagnoses.

REPLY

Lisa @techi, thank you for sharing your story. I am happy that you found some answers and are recovering. It is an inspiring story and the reason why it’s really important to be a strong advocate for yourself and others who may not be aware of how important it is.

John

@techi, That is great! You and I and thousands of others forget that the Mayo clinics are just gatherings of humnan beings, and do make mistakes, and that we are our own best doctors when we dig out the information ourselves. Thanks again for telling us of your journey.

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