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.