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amber3212 (@amber3212)

Functional Neurological Disorder

Brain & Nervous System | Last Active: Jul 17 11:44am | Replies (49)

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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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Replies to "A lot of other countries consider my diagnosis a ‘functional’ disorder when it is a serious,..."

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!

Amen!!! Mines was first conversion disorder then at the Mayo by the neurologist FND but you know God was in control and it ended up being HE and just recently l had emergency heart ablation surgery and be misdiagnosed since 2014. Thrown in mental wards given antidepressants and allergic to a hist of meds. And dealing with short med staff, records not getting to doctors, lies, messing with my credit, mistaken identity and l can go on but l have to give it to God because he will take care of everything. So l am seeing that when l see other people going through what l am. And l am seeing miracles people who are getting better and l am rejoicing with them. And now l have a team that cares. So sometimes we have doctors that don't want to go any further and some who like to intimidate and then some who are humble and love helping. And pretty soon everyone will have a psych diagnosis because theres no confirm test to really prove that so that the diagnoses you will see. And so we give more meds and don't solve the problem. Just like Alzheimer's you couldn't definitely rule that until a person was dead but everyone throws out that diagnoses. They did that to my sister before they even did a PET test. That was last year she just got the test last week. They did even have the machine to do it until this year. But we can make that diagnosis, figure that one out. When l came back from the Mayo clinic and gave my doctor my records last year then this year they got the machine. And we had the same doctor but l still don't think she has Alzheimer's l think she has an autoimmune disease because shes deteriorating to fast but l just a sister. Not s professional no but l.have common sense. So l with you FND is not a diagnoses it's a thought!!!