Functional Neurological Disorder

Posted by amber3212 @amber3212, Feb 20, 2019

Anyone have FND? Looking for more info and someone to talk to, also on how to get treatment. Thanks!

@redhead63

Hi:
What causes the ammonia to raise?

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@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

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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.

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@amber3212

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.

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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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Amber, 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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@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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@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.

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@colleenyoung

Amber, 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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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

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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?

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@marycoy

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?

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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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@marycoy
Good evening Mary,
I wrote you this morning but it wouldn’t post.
The Conversion Disorder diagnosis in my opinion, is all to often an excuse for a doctor to not find out what’s really causing a persons symptoms. Another way of saying “I don’t know.” I have Epilepsy and too many doctors claim a patient has Conversion disorder if their Neurologist exam, MRI & EEG are normal. All that means is that everything was functioning fine at that time. In the case of Epilepsy the majority of patients tests are normal. I’m not saying I don’t believe in psychogenesis. Just that t’s overly diagnosed.
Not sure what your granddaughters malfunction or what her symtomatology is so it’s difficult to be specific in her case.
Im sorry your granddaughter is suffering and I hope they can determine the cause of her problems. How old is she?
Best of luck to you all.
Jake

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@danielad

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

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@danielad
I wanted to compliment you on this post. I too have encountered problems with doctors and their offen highly inflated egos. I chose to take three of my dads doctors to court and I prevailed. Once involving his heart, another cancer and Alzheimer’s. I have great respect for people with outstanding vocabulary skills. My brother has an excellent volcabulary but I’d never expect him to be less than he is. He frequently uses words I don’t know and that’s fine, I always ask what something means. Always be all that you can be. Many doctors act like their patients are or should be subservient.
Jake

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@jakedduck1

@danielad
I wanted to compliment you on this post. I too have encountered problems with doctors and their offen highly inflated egos. I chose to take three of my dads doctors to court and I prevailed. Once involving his heart, another cancer and Alzheimer’s. I have great respect for people with outstanding vocabulary skills. My brother has an excellent volcabulary but I’d never expect him to be less than he is. He frequently uses words I don’t know and that’s fine, I always ask what something means. Always be all that you can be. Many doctors act like their patients are or should be subservient.
Jake

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@jakedduck1 — Hello Jake! Thank you for the kind comment. It seems that your experiences with medical staffs have been quite an ordeal! Good for you, for taking a stand and following it through to its end … but glad all has been resolved … and in your favor! Stay happy and healthy!
–Dee

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@danielad

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

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@danielad @jakedduck1 I think I was the one who mentioned not using medical language, but the context of that was with spine surgeons. I think that is a different ball game with higher stakes where confusing symptoms can scare the surgeons right out of helping a patient and it happens a lot. It happened to me 5 times over 2 years, and that is why I came to Mayo where they did listen, and they recognized what I was describing. That was my prior experience before I came to Mayo in describing my symptoms to a surgeon's nurse and it caused issues. She was attacking my credibility, and because all the communications to the surgeon were filtered through his staff, I wondered if she told him at all. It didn't seem that she knew as much as I did about the real symptoms I was having that were caused by my spine injury and she was refusing to make follow up appointments for me. After 5 months of complying with their requests, the surgeon decided not to offer surgery. It wasted my time and my deficits increased because of increased pressure on my spinal cord from the bone spurs that were digging into it. No doctor wants a patient to diagnose themselves from the internet, and then tell them how to do their jobs. I think that is what the nurse may have thought, but they missed understanding the cause of my symptoms, and missed the real diagnosis. In my search for help, I also ran into very arrogant surgeons who didn't want to take the time to answer questions at all. If I wasn't important enough to be permitted to ask a question, they probably didn't want me to try to match them with my understanding of medical terminology. If cases are simple without additional complexities, perhaps the response would have been different, but mine was not one of those cases. I was a helpless patient on my way to becoming disabled, waiting to be rescued, and the doctors were putting their needs for stellar surgical success rates first. They didn't understand my case and wouldn't take a risk on me. It isn't easy to look for new surgeons as there are not a lot of them, and they can booked for months. A patient shouldn't really present themselves as an expert at their consultations because they are consulting an expert, and I think if correct medical terminology is used, it should be posed as a question to the doctor, not a diagnosis type statement of this is what I have, now you can fix it. That probably isn't the intent of the patient, but you don't want a provider to interpret it that way.

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