u/yadrill

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 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.

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.

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 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.

Hey everyone, I'm going to UConn in the fall from North Jersey, so I wanted to see if anyone had recs for good Latin food either around campus or in Hartford. I'm Dominican and Ecuadorian, so that's preferred (or even Puerto Rican/Peruvian food), but I'm down for anything. Don't have super high hopes, but any and all suggestions are appreciated🙏

I was j wondering if anyone knows when first year move in dates will be out? I'll be in CT Hall if anyone else is🫡

[CW - weight...? mean doctors? don't know why this post was removed otherwise]

So I recently went to the ER to see if they could do anything for me - I formerly had an NG, but my parents forced my doctors to remove it, and once that happened my doctor refused to replace it once I turned 18 and told me to see another doctor. My condition has declined since then and I was desperate for help, so I went. As I'm looking over the notes from my visit, it's just flat out disgusting.

First, the ER doctor said I have "history of psychiatric and somatic designations". I have hEDS, POTS, ME/CFS, history of sepsis, and two misdiagnoses of AMPS and FND, as well as "treated for gastroparesis" but nothing officially in my chart. He also claims that I have "refused psychiatric treatment", but not only have I never done that, it wasn't relevant to my visit and nothing further was ever recommended to me.

The second big thing is that he apparently reached out to my former GI via phone, and wrote some horrific comments that he claimed were from her. He said that she "strongly does not recommend getting an NG tube" despite the fact that she was the one who initially said to me that there was no other choice for me but to get one, and she randomly switched up after my parents forced her to remove my tube. He also said that she claimed I "refused admission for psychiatric work up" but again, none of that was ever suggested to me, it has nothing to do with my symptoms, and I'm psychiatrically sound. The most wildly insane thing he claims she said was that I have been "manipulative in the past, lying to medical providers about symptoms, and manipulated my weight with assistive devices". Not a single piece of that is accurate and honestly I feel so stuck, like I now have this following me around. No doctors have taken me seriously since I was misdiagnosed with FND despite having almost none of the criteria and not receiving any testing prior to that diagnosis. I don't even know what to do anymore, I'm at a total loss. I weigh 100 lbs as a 5'8 guy, I can't even keep down water, and that NG tube was my lifeline. I was actually beginning to see improvements.

What do I even do at this point? How do I correct the several providers who have basically slandered me all across MyChart? This makes me genuinely sick to my stomach and I sound crazy if I try to deny any of it bc they already painted me as some psychotic liar. Please help.

So I recently went to the ER to see if they could do anything for me - I formerly had an NG, but my parents forced my doctors to remove it, and once that happened my doctor refused to replace it once I turned 18 and told me to see another doctor. My condition has declined since then and I was desperate for help, so I went. As I'm looking over the notes from my visit, it's just flat out disgusting.

First, the ER doctor said I have "history of psychiatric and somatic designations". I have hEDS, POTS, ME/CFS, history of sepsis, and two misdiagnoses of AMPS and FND, as well as "treated for gastroparesis" but nothing officially in my chart. He also claims that I have "refused psychiatric treatment", but not only have I never done that, it wasn't relevant to my visit and nothing further was ever recommended to me.

The second big thing is that he apparently reached out to my former GI via phone, and wrote some horrific comments that he claimed were from her. He said that she "strongly does not recommend getting an NG tube" despite the fact that she was the one who initially said to me that there was no other choice for me but to get one, even recommended a g-tube, and she randomly switched up after my parents forced her to remove my tube. He also said that she claimed I "refused admission for psychiatric work up" but again, none of that was ever suggested to me, it has nothing to do with my symptoms, and I'm psychiatrically sound. The most wildly insane thing he claims she said was that I have been "manipulative in the past, lying to medical providers about symptoms, and manipulated my weight with assistive devices". Not a single piece of that is accurate and honestly I feel so stuck, like I now have this following me around. No doctors have taken me seriously since I was misdiagnosed with FND despite having almost none of the criteria and not receiving any testing prior to that diagnosis. I don't even know what to do anymore, I'm at a total loss. I weigh 100 lbs as a 5'8 guy, I can't even keep down water, and that NG tube was my lifeline. I was actually beginning to see improvements.

What do I even do at this point? How do I correct the several providers who have basically slandered me all across MyChart? This makes me genuinely sick to my stomach and I sound crazy if I try to deny any of it bc they already painted me as some psychotic liar. Please help.

So I recently went to the ER to see if they could do anything for me - I formerly had an NG, but my parents forced my doctors to remove it, and once that happened my doctor refused to replace it once I turned 18 and told me to see another doctor. My condition has declined since then and I was desperate for help, so I went. As I'm looking over the notes from my visit, it's just flat out disgusting.

First, the ER doctor said I have "history of psychiatric and somatic designations". I have hEDS, POTS, ME/CFS, history of sepsis, and two misdiagnoses of AMPS and FND, as well as "treated for gastroparesis" but nothing officially in my chart. He also claims that I have "refused psychiatric treatment", but not only have I never done that, it wasn't relevant to my visit and nothing further was ever recommended to me.

The second big thing is that he apparently reached out to my former GI via phone, and wrote some horrific comments that he claimed were from her. He said that she "strongly does not recommend getting an NG tube" despite the fact that she was the one who initially said to me that there was no other choice for me but to get one, and she randomly switched up after my parents forced her to remove my tube. He also said that she claimed I "refused admission for psychiatric work up" but again, none of that was ever suggested to me, it has nothing to do with my symptoms, and I'm psychiatrically sound. The most wildly insane thing he claims she said was that I have been "manipulative in the past, lying to medical providers about symptoms, and manipulated my weight with assistive devices". Not a single piece of that is accurate and honestly I feel so stuck, like I now have this following me around. No doctors have taken me seriously since I was misdiagnosed with FND despite having almost none of the criteria and not receiving any testing prior to that diagnosis. I don't even know what to do anymore, I'm at a total loss. I weigh 100 lbs as a 5'8 guy, I can't even keep down water, and that NG tube was my lifeline. I was actually beginning to see improvements.

What do I even do at this point? How do I correct the several providers who have basically slandered me all across MyChart? This makes me genuinely sick to my stomach and I sound crazy if I try to deny any of it bc they already painted me as some psychotic liar. Please help.

I apologize for the convoluted post in advance but I'm rlly in need of help here. Back in February, prior to my 18th birthday, my GI had me admitted to get a feeding tube placed due to the severity of my symptoms. The feeding tube plus a bunch of meds (Reglan + others) was going rlly well, I was gaining weight, the Reglan was making me rlly sick but otherwise I was starting to have a chance. At one point in my hospital stay, my father, who had been (barely) on board w the feeding tube up until that point, told my care team that they were either going to send me to a long term care facility or remove the feeding tube. He told them he didn't wanna "waste his day off" taking me to get it replaced as needed, and that he didn't wanna deal w it. My GI tried to talk him into letting me get a g-tube instead so it would need to be replaced less frequently, but he wouldn't budge. So I ended up being discharged without the tube and left to struggle again. A few days before my 18th, I had a follow up w my GI, who told me she wouldn't be replacing the tube and would be dropping me as a patient bc she didn't have the resources to provide the level of complex care I need. For context, this whole time I've been "treated for gastroparesis" but never officially diagnosed bc as you can tell my parents were both incredibly medically neglectful and didn't get me the help I needed before my condition progressed to this point, and by the time they did I was barely hanging on and had become unable to tolerate anything orally without vomiting it all up. This GI was the second GI to drop me due to my complex needs, and the Columbia motility clinic refused me as a patient for the same reasons but also lied to my face and documented me as a psych case behind my back in MyChart while telling me verbally abt my gastroparesis. I have rlly low trust in doctors, but I'm declining way too much to ignore. I'm barely 100 lbs as a 5'8 18 year old guy, and so weak that I struggle to lift a cup of tea. I'm in so much pain all the time but I don't know where to go from here. I don't even know which doctors in the NY Metro area would listen and help me. I can't keep living like this and I need some advice. If you read this far, I greatly appreciate you :)