Functional Neurological Disorder

Posted by amber3212 @amber3212, Wed, Feb 20 11:56am

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

Liked by Dee, Leonard

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!

REPLY
@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?

Liked by Dee, Leonard

REPLY
@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?

Liked by Dee, Leonard

REPLY

@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

Liked by Dee

REPLY
@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

Jump to this post

@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

Liked by Dee

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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

Liked by Leonard

REPLY
@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

Jump to this post

@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.

Liked by Dee, Leonard

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@jenniferhunter

@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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@jenniferhunter — Hi Jennifer; I am very sorry to know you had such terrible experiences. It is not something anyone should have to go through, even once, let alone 5 times in 2 years!! I am so happy to know you found a very different atmosphere at Mayo. The acceptance, reassurance, and help you found at Mayo are basic expectations all of us have and should find in a doctor and his/her medical staff in any medical facility. How are you doing now? Did you have surgery? A big hug!
–Dee

Liked by Leonard

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@danielad

@jenniferhunter — Hi Jennifer; I am very sorry to know you had such terrible experiences. It is not something anyone should have to go through, even once, let alone 5 times in 2 years!! I am so happy to know you found a very different atmosphere at Mayo. The acceptance, reassurance, and help you found at Mayo are basic expectations all of us have and should find in a doctor and his/her medical staff in any medical facility. How are you doing now? Did you have surgery? A big hug!
–Dee

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@danielad Hi Dee. A big hug for you too, Dee! Yes I had surgery at Mayo 2 years ago and it changed my life. I had spinal cord compression and was loosing the ability to control my arms. I wish I had come to Mayo first, and now I refer patients to my surgeon there. I was very impressed with my care, and now will not go anywhere else. Those 2 years were the hardest in my life because I was also taking care of both my disabled parents, and my dad was in end stage heart failure and passed away, and I was in pain and fearful of my future. I had more time to spend with my dad because I wasn't having surgery because I couldn't get an offer, but a couple weeks after my dad's services, I was called for appointments at Mayo. I am still working on rebuilding muscle that I lost, but here is my story. You'll also find a lot more in the Art for Healing Discussion in the Just Want to Talk Group.

https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
https://connect.mayoclinic.org/discussion/art-for-healing/ (pictures on page 1)
https://connect.mayoclinic.org/page/about-connect/newsfeed-post/meet-jenniferhunter-where-health-and-art-meet/

Liked by Leonard

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@lisalucier

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 @marycoy. I also have FND and I have been told and have come to believe as a result of my treatment that it stems from a central sensitization issue and psychological issues are NOT the root cause. Mayo Clinic successfully treats patients with FND as a central sensitization syndrome within their 3 week pain rehabilitation program. The same protocols used to address chronic pain also work for other FND symptoms. It has changed my life and for that reason I highly recommend the program. If you have not already viewed Dr. Sletten's video that explains central sensitization, you can view it at

. Dr. Sletten is located at Mayo Clinic in Florida, but the same program is available at Mayo Clinic in Rochester and Arizona. If your granddaughter has not already had a consult at one of Mayo Clinic's Pain Rehabilitation Centers, it may be valuable for her to request a consult with one of the Pain Rehabilitation Center teams. She can self-refer to request an appointment if her local physicians are not familiar with this program, or not willing to make the referral for her. The link to the webpage is https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center.

Liked by Leonard

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@redhead63

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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You are correct when they can't find anything or don't want to try then they diagnosis you with FND or schizophrenic, bipolar or psychotic. But at the mayo clinic that when l found out they did my TIP procedure incorrectly at the hospital in my state. And the neurologist at the mayo clinic had to finally say they misdiagnosed me. She hated to say that too because she handed me the website on FND.

Liked by Leonard

REPLY

After dealing with neurological issues for 13 years, I was just diagnosed with FND by a hospital attending neurologist who did consult with my neurologist. However there are a few symptoms I have that do not fit the profile. Another attending neurologist I saw in the hospital this morning is not certain this is the correct diagnosis for me. Here is what I have been dealing with (*these items not consistent with FND):
-Foot drop
-Neurogenic bladder requiring intermittent catheterization
-Chronic pain
-Multiple episodes of optic neuritis with confirmed damage to my optic nerve*
-Severe spasticity throughout my body, esp in my legs*, I have a baclofen pump
-Multiple episodes of single limb paralysis and weakness
-5 episodes of ascending paralysis, much like Guillain-barre that recurs every 3-4 months, regain the ability to walk in between
-Hyperactive reflexes prior to baclofen pump, absent reflexes during paralysis episodes, normal reflexes between episodes*
-Chronic migraines (I have had migraines since I was a teenage so probably not related although worsened in last 10 years)
-Neurogenic bowel
-idiopathic tachycardia my cardiologist thinks it is autonomic nervous system damage
-Numbness and tingling in my feet

I had a doctor in Dallas tell me it was stress. I have a normal MRI and a lot of normal tests but not all of them are normal. I have sjogren, raynauds, asthma, GERD, and several random tests that are abnormal but don't amount to any clear diagnosis. A lot of FDN sounds like me but I am not convinced. My neurologist feels that my spasticity is a separate issue from the FDN but doesn't know what the cause of that is. I just don't know what to think. I feel a little more hopeful to actually have a diagnosis but just not sure it is right. From my understanding, retraining the brain only works if you accepts the diagnosis.

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@poppymom

After dealing with neurological issues for 13 years, I was just diagnosed with FND by a hospital attending neurologist who did consult with my neurologist. However there are a few symptoms I have that do not fit the profile. Another attending neurologist I saw in the hospital this morning is not certain this is the correct diagnosis for me. Here is what I have been dealing with (*these items not consistent with FND):
-Foot drop
-Neurogenic bladder requiring intermittent catheterization
-Chronic pain
-Multiple episodes of optic neuritis with confirmed damage to my optic nerve*
-Severe spasticity throughout my body, esp in my legs*, I have a baclofen pump
-Multiple episodes of single limb paralysis and weakness
-5 episodes of ascending paralysis, much like Guillain-barre that recurs every 3-4 months, regain the ability to walk in between
-Hyperactive reflexes prior to baclofen pump, absent reflexes during paralysis episodes, normal reflexes between episodes*
-Chronic migraines (I have had migraines since I was a teenage so probably not related although worsened in last 10 years)
-Neurogenic bowel
-idiopathic tachycardia my cardiologist thinks it is autonomic nervous system damage
-Numbness and tingling in my feet

I had a doctor in Dallas tell me it was stress. I have a normal MRI and a lot of normal tests but not all of them are normal. I have sjogren, raynauds, asthma, GERD, and several random tests that are abnormal but don't amount to any clear diagnosis. A lot of FDN sounds like me but I am not convinced. My neurologist feels that my spasticity is a separate issue from the FDN but doesn't know what the cause of that is. I just don't know what to think. I feel a little more hopeful to actually have a diagnosis but just not sure it is right. From my understanding, retraining the brain only works if you accepts the diagnosis.

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@poppymom
Good evening,
This may be partially duplicated but I have to tend to my mom, sorry. It may not be helpful anyway. This is a copy of an earlier post. Maybe you saw it. This is an excuse of a diagnosis that really makes me angry. FND in my opinion isn’t much more than an excuse for doctors to not properly diagnose a patient. I have Epilepsy and when stupid lazy doctors (In my unprofessional opinion) are unable to correctly diagnose something instead of say Idiopathic (Unknown) they use FND/Conversion disorder. The cause of seizures in Epilepsy are seldom identified anyway even under the best of circumstances and doctors.
I think it’s another way of saying “I don’t know and I’m not going to try and find out anything and I don’t really care.” 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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