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I took part in a clinical trial. Have you?

Just Want to Talk | Last Active: Jul 12, 2019 | Replies (20)
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@Erinmfs

Thank you for helping with the organization.

I took part in the NIH study for 2 reasons

I hadn't been to Mayo yet, and I didnt agree with the diagnosis I was tagged with. I wasnt getting help with the numbness, tingling and difficulty breathing that I was experiencing. I was very frightened by the care I was receiving. Forced on me. My MG was not addressed. MG wasnt diagnosed yet.

I also wanted to find my siblings. I was adopted but I had found limited information. I was accepted in the Schizophrenia sibling Study. I knew I had siblings, but no contact information was available.

The NIH study took DNA samples and mapped my brain actually. Researchers identifying DNA for Sz and psychosis.

The outcome of the NIH study was very interesting, NIH says I dont have schizophrenia because I dont have the negative symptoms plus I have more fluid in my brain than other study participants. Neurology at Mayo says I dont have hydrocephalus.

I've had amazing brain tests, I'm happy to say that researchers even measured my acqueduct of sylvius in Bethesda's lab 🙂 test included
Functional MRIs
Magnetoencephalography
Nuclear PET

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Replies to "Thank you for helping with the organization. I took part in the NIH study for 2..."
Colleen Young, Connect Director | @colleenyoung | May 31, 2019

That sounds like an overall good experience for you, Erin. Interesting how the study also helped you will your goal of discovering your family medical history and putting some fears to rest.

If I understand the timeline correctly, you became a Mayo patient after the results of the study testing but before myasthenia gravis (MG) was identified or diagnosed, right? Did the results of the study give you the confidence to seek a second opinion?

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