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I took part in a clinical trial. Have you?
Just Want to Talk | Last Active: Jul 12, 2019 | Replies (20)Comment receiving replies
Hi Erin, What a great topic to start. You'll notice that I merged the 2 discussions you started related to clinical trials into one discussion thread. I think it would be great to get a conversation started where people can share their experiences about taking part in studies and clinical trials. It can also be a place where people can get answers to questions if they are thinking about taking part in a clinical trial.
@user_chdb5e8ac Erin, let's start with you. Why did you want to take part in the study at NIH? Who suggested that you participate?
Replies to "Hi Erin, What a great topic to start. You'll notice that I merged the 2 discussions..."
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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