Hi:
I also was diagnosed with Functional Disorder through Mayo. It’s what they do when they cannot find or do the proper tests. I finally was diagnosed with Autonomic Dysfunction through the Cleveland Clinic. I do no like the Mayo Clinic because this is the third time that they diagnosed me. I am so done with that place.
@amber3212 The neurologist at the mayo clinic gave me the website for me to read about it. The previous name for it was conversion disorder. It meant being stressed about an illness that a doctor can't locate and illness or disease. And she told me if everything comes back normal she would refer me to behavioral medicine. So they can teach me how to deal with my stress or fears. Well everything didn't come back normal my TIP procedure was done incorrectly and that's why l kept falling, slurred speech disorientation and tremors. It was because my ammonia levels sometimes elevated. It was elevated one time when l was in the doctors office and l.fell after l handed paperwork to the registration clerk. And l busted my lip and l had to go to the hospital. So when l left the mayo clinic the neurologist had to tell me l was misdiagnosed. And she hated that because she was wrong. And she had me scheduled to see 3 psychiatrist and the last day she cancelled the 3rd one. So read about it because you might have it and you might not. Because some illness can have symptoms like FND. Good luck
@redhead63 A liver condition can cause higher ammonia blood levels. I used to take care of an elderly woman with this and the cause was alcoholism that resulted in liver damage, so the waste products were not converted properly into less toxic products to be excreted by the kidneys. She had brain damage from the ammonia that resulted in a loss of short term memory. Here a link that explains the process. https://www.mayoclinic.org/tests-procedures/blood-urea-nitrogen/about/pac-20384821
Anyone seen Dr. Mergherita Miloni? I'm looking up reviews and getting a little nervous. 😕 Not too good of ratings. Most say she's arrogant and doesn't listen. That's the last thing Momma needs.
Anyone seen Dr. Mergherita Miloni? I'm looking up reviews and getting a little nervous. 😕 Not too good of ratings. Most say she's arrogant and doesn't listen. That's the last thing Momma needs.
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.?
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.?
@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.
Hello Colleen @colleenyoung, I read the various tips provided by many members. ALL super great! One mentioned "avoiding the use of medical language" (or words to that effect). I found that it is true at times, less so at others. I have had both experiences.
I remember a doctor I was seeing about a sinus infection; when I explained my symptoms, I mentioned a "purulent discharge". He asked me: "And how do you know these big words?". I wasn't a child and it wasn't a compliment, it was stated in a very ironic and demeaning voice and a body language to match! Didn't go back.
But, I have met a lot of doctors who are the total opposite, so I would like to recommend the following: Don't change yourself to "adapt" to the doctors you will be seeing. Being prepared for your medical appointment is a positive thing, and if your vocabulary includes "Big Words", good for you! It only means that you know medical terminology that applies to your condition(s). If you find that your doctor is not receiving your information with a positive attitude, you can choose a different doctor. I did, and never regretted any of those changes.
A hug to all!
-- Dee
Looking for the right treatment for my granddaughter. Conflicting information as to the source of her symptoms. Mayo says its a malfunction between the nervous system and the brain, other Doctors say it is psychological and behaviors??????? Advice?
Looking for the right treatment for my granddaughter. Conflicting information as to the source of her symptoms. Mayo says its a malfunction between the nervous system and the brain, other Doctors say it is psychological and behaviors??????? Advice?
Hi, @marycoy, welcome to Mayo Clinic Connect. That's great you are trying to help your granddaughter get the right treatment for her conversion disorder/ functional neurological disorder.
Your search to better understand this disease and what is the source of her symptoms - malfunction between the nervous system and the brain, or something psychological and behavioral - sounds wise. Here is some Mayo Clinic information that may be useful in your search for further clarification on the source of your granddaughter's symptoms.
I'd like to ask @uldiver@amber3212@jubilee@techi@jenniferhunter to offer their thoughts on the source of the symptoms for patients who have a Conversion Disorder/ Functional Neurological Disorder diagnosis like your granddaughter.
Has your granddaughter seen multiple doctors to consult about her condition, @marycoy? Has any treatment been recommended to this point?
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Hi:
I also was diagnosed with Functional Disorder through Mayo. It’s what they do when they cannot find or do the proper tests. I finally was diagnosed with Autonomic Dysfunction through the Cleveland Clinic. I do no like the Mayo Clinic because this is the third time that they diagnosed me. I am so done with that place.
-
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Helpful -
Hug
1 ReactionHi:
What causes the ammonia to raise?
@redhead63 A liver condition can cause higher ammonia blood levels. I used to take care of an elderly woman with this and the cause was alcoholism that resulted in liver damage, so the waste products were not converted properly into less toxic products to be excreted by the kidneys. She had brain damage from the ammonia that resulted in a loss of short term memory. Here a link that explains the process. https://www.mayoclinic.org/tests-procedures/blood-urea-nitrogen/about/pac-20384821
Anyone seen Dr. Mergherita Miloni? I'm looking up reviews and getting a little nervous. 😕 Not too good of ratings. Most say she's arrogant and doesn't listen. That's the last thing Momma needs.
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.?
-
Like -
Helpful -
Hug
3 ReactionsAmber, you might also appreciate the advice fellow members share in this discussion on Connect:
- Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
Be sure to add your tips, too!
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Helpful -
Hug
4 Reactions@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.
-
Like -
Helpful -
Hug
6 ReactionsHello Colleen @colleenyoung, I read the various tips provided by many members. ALL super great! One mentioned "avoiding the use of medical language" (or words to that effect). I found that it is true at times, less so at others. I have had both experiences.
I remember a doctor I was seeing about a sinus infection; when I explained my symptoms, I mentioned a "purulent discharge". He asked me: "And how do you know these big words?". I wasn't a child and it wasn't a compliment, it was stated in a very ironic and demeaning voice and a body language to match! Didn't go back.
But, I have met a lot of doctors who are the total opposite, so I would like to recommend the following: Don't change yourself to "adapt" to the doctors you will be seeing. Being prepared for your medical appointment is a positive thing, and if your vocabulary includes "Big Words", good for you! It only means that you know medical terminology that applies to your condition(s). If you find that your doctor is not receiving your information with a positive attitude, you can choose a different doctor. I did, and never regretted any of those changes.
A hug to all!
-- Dee
-
Like -
Helpful -
Hug
4 ReactionsLooking for the right treatment for my granddaughter. Conflicting information as to the source of her symptoms. Mayo says its a malfunction between the nervous system and the brain, other Doctors say it is psychological and behaviors??????? Advice?
-
Like -
Helpful -
Hug
2 ReactionsHi, @marycoy, welcome to Mayo Clinic Connect. That's great you are trying to help your granddaughter get the right treatment for her conversion disorder/ functional neurological disorder.
Your search to better understand this disease and what is the source of her symptoms - malfunction between the nervous system and the brain, or something psychological and behavioral - sounds wise. Here is some Mayo Clinic information that may be useful in your search for further clarification on the source of your granddaughter's symptoms.
I'd like to ask @uldiver @amber3212 @jubilee @techi @jenniferhunter to offer their thoughts on the source of the symptoms for patients who have a Conversion Disorder/ Functional Neurological Disorder diagnosis like your granddaughter.
Has your granddaughter seen multiple doctors to consult about her condition, @marycoy? Has any treatment been recommended to this point?
-
Like -
Helpful -
Hug
2 Reactions