Mayo Clinic Connect
Anyone have FND? Looking for more info and someone to talk to, also on how to get treatment. Thanks!
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I’d love to know what the definition of this means also. I know of a couple, but would like to know what it means. Who diagnosed you with this?
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My Mom was just diagnosed with this after all extensive testing came back normal. I'm not sure if I believe in it just yet.
The reason I ask is because in other countries they use this diagnosis to say it’s ‘psychosomatic’. Meaning they cannot find a physiological cause therefore it must be all in your head.
Here is some Mayo Clinic information on functional neurologic disorders/conversion disorder https://www.mayoclinic.org/diseases-conditions/conversion-disorder/symptoms-causes/syc-20355197.
I'd also like to bring @jubilee into this discussion, as this member has mentioned FND and may have insights on the condition and its treatment.
@amber3212 – how is your mom doing? @uldiver – do you or someone you know also have an FND diagnosis?
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A lot of other countries consider my diagnosis a ‘functional’ disorder when it is a serious, neurological disorder that should be treated as so. It is sad when this diagnosis is thrown around bc they can’t find the correct answer the first time. Thankfully I do have the proper diagnosis and I have good doctors and will hopefully be seeing an M.E. (myalgic encephalomyelitis) specialist next year. I’ve heard we are about 2 years from treatment being released for this diagnosis and there is a ton of research.
My advice for those who get this FND thrown around: seek help elsewhere and continue to advocate for yourself.
I thankfully have not had this diagnosis, but it was mentioned in the neuro MD’s notes from Mayo before they found my diagnosis and it pissed me off when I found out what it meant. I’m not crazy and I have many physiological problems that need to be addressed and thankful that I have good doctors here in town to help me as best they can. The main MD at Mayo I saw was excellent and after her and the specialists talked determined my diagnosis based on my test results.
Keep fighting to find the right answer. Nothing worse than the unknown or MDs that don’t believe you! Good luck
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Hi @amber3212 and @uldiver. I was diagnosed with functional movement disorder (FMD) which is a subset of FND after living with symptoms for many years. This is a tough diagnosis to wrap ones head around. FND and FMD are no longer considered to be "all in your head" (unless you consider that the brain is in your head!). Rather FND is due to a problem with the functioning of the nervous system, and based on recent research it is now thought by many neurologists to be the result of the brain’s inability to send and receive signals properly, rather than disease. Trauma is sometimes a trigger, but not always. Stress does seem to make symptoms worse…so that's the psychogenic part. But as my neurologist explained "the brain has hardware and software…your brain's hardware is fine but the software is not." I was thrilled when he told me there is treatment to 'retrain the brain'.
I'm not sure where you live but Stanford (California), Cleveland Clinic (Ohio), University of Louisville/Frazier Rehabilitation Hospital (KY), Mayo Clinic (Minnesota, Florida and Arizona), and The Recovery Project (Michigan) all have specialty clinics with special FMD programs. Other places like Mass Medical in Boston treat FMD and FND as well, and there are FND research studies being done there.
After I was diagnosed I found my way to 2 very good websites and a Facebook support group – all of which greatly helped me understand and eventually accept that the diagnosis is real for me. I highly recommend looking at the information at these website links if f you haven't already found you way to there: https://fndhope.org/ and https://www.neurosymptoms.org/.
I hope this helps.
@amber3212, one more bit of information since you are looking for people who to talk to who 'get it'… there are 2 Facebook groups for people with FND and/or their caregivers. The International group is at https://www.facebook.com/groups/FunctionalDisorder/ and there is a US/Canada group at https://www.facebook.com/groups/1581750502109806/.
That’s great to hear you’re doing better!
Neuroplasticity is important in every disorder/disease. It gave me hope I could improve, but unfortunately for me until they find a cure, I do as much as I can conservatively and with whatever medicine they recommend as we are kind of experimenting.
Good luck to those of you with FND and FMD.
FB support group are very helpful! I wish there were in person ME/CFS groups, but we are too sick and weak to meet in person. We have a support phone group once a week and discuss 3 topics of choice and then the research update at the end of the phone call. Definitely recommend support groups!
She finally got accepted to Mayo!!! We've been trying for over 2 years! Deep down I think there is more going on than FND!! Praying we get a good doc to figure out what is going on!
@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
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.
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.?
Liked by Leonard, Jennifer Hunter, Lyn
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