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freeangel (@freeangel)

I am not ok with this at all

Neuroendocrine Tumors (NETs) | Last Active: May 29, 2020 | Replies (19)

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@andre1221

Good afternoon. This whole ordeal started with me fourteen years ago and gradually worsened. My first indicator was chronic headaches that would last 30 seconds to 3 days. My local pcp referred me to Shands at UF. After 3 years of misdiagnosis, the Chief of their Neurology Department told me that they couldn’t fix me. He cited that I didn’t fit in any headache family, that I was somewhere between cluster and migraine. He was polite and professional but…..

When Mayo Jax started treating me, their NET Specialist said the reason for the obscure headaches is the Serotonin being dumped during carcinoid attacks and/or crisis. Obviously, a lot can change from fourteen years ago. Unfortunately, I went to them thinking as reputable that they are, I would have a good chance. Sadly, they just focused on my headache and never considered anything else (yes, looking back there were several signs and symptoms pointing to this illness).

I am also a patient at Moffitt. They did my second opinion in August 2018. I was happy with them but comparing them to Mayo Clinic isn’t even close for me. No disrespect to anyone currently there or considering them, just my experience and opinion.

Hope you get some relief and results. If I can help, please reach out.

Take care, André

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Replies to "Good afternoon. This whole ordeal started with me fourteen years ago and gradually worsened. My first..."

I'm so sorry Andre1221. Could you clarify something for me? When you said that there is no comparison to Mayo in JAX, were you meaning that Mayo was not investigative enough? That's so disappointing. I've been to JAX to accompany my child for her spinal treatment, but at Nemours, not Mayo. I just heard so many good things about Mayo, I am sad that there was no interdisciplinary approach for you. Do you think it was that specific doctor, or that someone dropped the ball, or that it was a systemic problem in JAX?