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I've been going to Mayo Clinic in Jacksonville for over six years now with the same set of worsening symptoms. I have yet to get any kind of diagnosis. I come here and see people with issues I've never even heard of and wonder how they ever got diagnosed. I've been seeing a Family Medicine doctor all this time and finally convinced them to try and transfer me to the internal medicine team. A friend once told me that it's all about getting in front of the right doctor. I'm still searching.
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jaxdave13, https://www.washingtonpost.com/health/2026/06/06/medical-mystery-after-decades-pelvic-pain-100-doctor-visits-one-question-changed-everything/ Your friend has it right. I hope you find the right one.
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2 Reactions@gently I lived in Puerto Rico as a kid. I remember my Dad telling us not to swim in the lakes because of this same disease. My brother and sister also suffered from the same condition.
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2 ReactionsI would say switching to internal med would be a good idea. I did that many years ago and I was very happy with the outcome at the time I got a young doctor that was just out of medical school and today about 30 years later I still have them and I love him for a doctor,
If it’s anything like here in Rochester, when you make an appointment and your doctor is not available, you could get one of his associates that might help as well
I wish you the best
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2 Reactions@minnesota10 I live in Rochester. And about 25 to 30 years ago, they put me on many different medications that was supposed to help for restless body.. The pills they gave me made it worse in fact and a sleep study they see me jerking to the point. I’m off the bed and I scared a few Technicians.
I think with restless leg, you need to do your own research and find out what works for you. What works for one person may not work for another.
I have found medication’s make it worse and the best thing I could do is be careful and stay off the medication’s that can trigger it.
Everybody body has a different trigger and we need to figure out just what it is.
I am so happy you found relief, but I didn’t. I just tried to drug for a few weeks and it re-triggered everything and now I’m getting better back to normal
Good luck