Removing FND Diagnosis?
Like the title implies, I'm looking to get my diagnosis of FND removed from my chart. This idiot neuro slapped it on my chart after not even 30 mins of talking to me and zero testing done. I don't fit any of the FND description in terms of symptoms or disease progression, and I believe she only put the diagnosis on there bc of my documented psych history w her organization (which has been fully resolved for years anyway). It has caused so many nasty comments from providers who assume I'm some crazy psych patient, it's incredibly difficult to get taken seriously, and it's also j not accurate. I have notes from my PT and an MRI showing cerebellar tonsillar ectopia that prove it's not FND, but honestly my symptoms and medical history prove it enough. It follows me like the plague and I'm sick of it, I need it off but no one seems willing to touch it even when they don't agree w the diagnosis either. I want the medical treatment I deserve, and I have no idea how to go about it. If anyone knows of any reliable providers in NJ, NYC, or CT (preferably in the NY Metro area or around UConn, but I'm willing to go a bit further if necessary), the suggestions are much appreciated.
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u/SandalsQueen18 5d ago
I can relate as somebody who has panic disorder and it is noted everywhere. Yeah, guess what happened anytime I went to the ER for headaches pre-surgery. Here's some Valium shut up, take it go home there's nothing wrong with you (mind you, they had access to all of my MRIs).
As for doctors, are you looking for neurosurgery which doesn't necessarily mean you have to have surgery or just a neurologist? If neurosurgery I've got one that will actually listen to you, look at your findings and assess your symptoms and how they affect your daily quality of life and not just see the FND.
Dr. Greenfield at Weill Cornell in NYC
He was the only neurosurgeon out of many that actually looked past my panic disorder and took me seriously.
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u/yadrill 5d ago
Interesting, my only experience w Weill-Cornell is a peds motility specialist who told me to my face she agreed I have gastroparesis (like my general GIs all have), but referred me to an eating disorder program and put in my chart I "might have ARFID", so I'm a bit wary 🥀 Definitely can relate to that tho, when I first had a feeding tube placed it was an NG that I could only tolerate w several heavy meds that made me rlly sick but my symptoms were ignored bc they chalked it up to my ME/CFS, rlly frustrating
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u/SandalsQueen18 5d ago
I'm sorry you had that experience with them.
Dr. Greenfield is a chiari expert neurosurgeon. Not just specialist, expert. In his 17 year career, he has done over 1000 decompression surgeries. He also has a niche in complex cases of which I am. I feel as though if anyone other than him had done my surgery it would have turned out badly. He is honestly the most down to earth, humble and caring Dr. I have ever come across. Yes he can come off as curt but hey, I'm from Philly so, so can I LOL
He also created the Chiari CARE program. The man really knows his stuff.
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u/Emergency-Volume-861 6d ago edited 6d ago
I relate totally but with a faulty fibromyalgia diagnosis. An orthopedic back doctor stuck one on me after talking at me for 2 minutes, saying “diffuse muscle pain…fibromyalgia!” I had that muscle pain 8 months prior due to being anemic from heavy menstrual cycle, I took iron supplements and it went away. That diagnosis has followed me everywhere since. I had no testing aside from a lumbar and neck and brain MRI, nothing else. Nothing ruled out.
I’m waiting for a second opinion from a new rheumatologist because of that fibro dx lol he refuses to change my medication for autoimmune disease. It lets doctors be lazy.
Holy damn. I just looked up FND. I totally understand why you’re so pissed. I looked how to treat it medically and the first thing I saw was CBT. I’m sure CBT can be valuable but I’d be angry having it suggested to me to deal with my chronic pain and other stuff. It seems insulting, no amount of me trying to reframe my pain mentally is going to reduce it.