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amber3212 (@amber3212)

Functional Neurological Disorder (FND)

Brain & Nervous System | Last Active: May 18 10:23pm | Replies (72)

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@colleenyoung

Hi @amber3212, You'll notice that I moved your message to this earlier discussion that you started. I did this so that you can continue to connect with members who know your background and how you're seeking help for your mom.

You asked about a specific physician, Dr. Miloni, with whom your mom has an appointment and you're nervous because online ratings appear to not be favorable. That would set me on my guard a little too. But I would also caution about the validity of online reviews. Studies have shown that they are flawed. Here are some interesting articles:
– Why online reviews are not the best way to choose a doctor | Washington Post https://wapo.st/2HuZBUF
– How to Use Online Ratings for a Doctor | WebMD https://www.webmd.com/health-insurance/using-doctor-ratings-sites#1
– Who's rating doctors on RateMDs? The invisible hand of 'reputation management' | CBC https://www.cbc.ca/news/health/ratemds-privacy-reputation-management-1.4880831

Amber, will you be accompanying your mother to Mayo Clinic? How might members of this group, familiar with FND, help you prepare for the consultation? Have you started making a list of questions and assembled all her medical history and past tests, etc.?

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Replies to "Hi @amber3212, You'll notice that I moved your message to this earlier discussion that you started...."

@colleenyoung @amber3212 Wow, now there are companies dedicated to cleaning up reputations. It makes me think that a company that wants to be hired to manage a physician's online ratings might be planting an anonymous bad review, and then contacting the doctor to see if he'll pay for their services to fix it. Insurance companies also rate doctors on their success rates for procedures, and I think this is a reason that it is hard to find a doctor who is willing to take a risk on treating a patient if they have any doubts about possible failures or complications with their procedure. They want to maintain high success ratings so they pick and choose which patients they will help and those they will not. If you are the patient who has some confusing symptoms, it can be a long journey of looking for a doctor who will take a risk on treating you. This happened to me and I was refused help five times before I came to Mayo and got the help I needed.

I look at the papers and research of a physician, and anything I can find about if the doctor is teaching others in his field at their institution and medical conferences, and if they have been recognized for outstanding work in their field. I actually learned a lot by watching neurosurgeons presenting case discussions to other neurosurgeons online and having a background in biology helped me understand them. It's also how I knew that 5 specialists got my case wrong, and all had refused to help me with my problems of spinal cord compression because they could not connect my symptoms and imaging. I was the patient who's case presented differently than what they expected. In one of those online surgeon presentations I watched, a surgeon who saw me as a patient discussed the reasons he would not accept a patient for surgery and he said if they had mental issues, you could do the best surgery in the world and the patient would not appreciate it. I was kind of shocked to hear him say that and wondered if my case with the unusual symptoms that he couldn't explain labeled me as a crazy patient. At my last appointment with him, he said he didn't know if surgery would make me better or worse.

None of this happened at Mayo, and my specialists there took my case seriously, and I got the help I needed. I just wish I'd come there first. I think as patients, it really helps to learn all you can about your medical issues. I suggest getting your medical records and look up everything they say to learn about it. I've not written reviews about my doctors and even the ones who got it wrong, but I do relay my very positive experience here about how my life was changed by coming to Mayo.