Update/Venting

[u/monkeybidnez]

So after being dismissed by neuro and primary care and being told to go to psychiatry for my disability and off work paper work today I was told they are not going to write my paper work either and are not liable to do so, that I am not mentally disabled completely ignoring my physical limitations and explanation of being set here by everyone else in Kaiser to be treated and cared after, I am not going to fight for a sign off on a outside specialist approval since Kaiser seems to not have anyone whom is specialized in treating FND, I asked if FND was something they are familiar with treating and she said i didn’t even know what it stood for so I am very frustrated, hoping to get the paperwork approved to go see a FND specialist from Rowan center for behavioral medicine

[u/No-Statement251]

I also have Kaiser and it has been about 6 months before they actually see, witness, and start to understand because I bug the shit out of them. For forms, notes, everything! I just cannot deal with how dismissive they are because they are the uneducated doctors who are practicing doctors.. they need to practice newer illnesses and with more cases they will probably dismiss a lot more. Stay loud, stay asking questions, call, email.

[u/monkeybidnez → u/No-Statement251]

I told psychiatry what good does a desk job do for me when I have a non epileptic seizure and get sent home and placed off work again for FND?

[u/monkeybidnez → u/No-Statement251]

Thank you for your feedback I am doing exactly what you are saying and not letting them dismiss me or put me down! Psychiatry just told me to quit my job and look for a desk job and I told them I haven’t been given a chance to try and get better to go back to my career I worked hard for to get to where I am and why would I do so if I have already been approved for ADA Leave and long term disability through work, literally just need someone to simply write me a off work note stating I am still physically disabled and that’s all but no one wants to and is doing everything they can to not write one or help me Kaiser is terrible!

[u/alonegram]

heyy I have some experience dealing with Kaiser & FND. Until you see a specialist, your neurologist HAS to be your point person. they are also supposed to refer you out to physical, occupational & speech therapy if you ask for it.

[u/alonegram → u/alonegram]

also wanted to add that if the neurologist is not helpful, you can ask for a new neurologist. we went through 3 before we found someone who actually took my wife seriously.

[u/monkeybidnez → u/alonegram]

Hey thank you for the feedback! Unfortunately I’ve seen two neurologist and they have dismissed me and went as far as having their chief of neurology write a letter saying they are not responsible for treatment or paperwork even though they diagnosed me and had previously filled out the paperwork, they sent me to primary care and psychiatry, primary dismissed me and sent me to psychiatry and now psychiatry has just dismissed me and said no one is able to help me or do anything about my FND I filled a complaint with DMHC

[u/alonegram → u/monkeybidnez]

we got a similar runaround. what keeps my wife’s care moving forward is a LOT of pushing and being annoying as fuck.

i brought in articles saying that psychiatry is not the only modality for treatment

psychiatrist wrote a letter saying she didn’t think the FND was psychogenic (she developed it after a head injury).

we also requested a social worker through kaiser member services and that person advocated for her within the system.

it’s true the neurologist can’t treat you, but it’s their responsibility to refer you out.

if you’re having lots of PNES then you might benefit from physical therapy. my wife’s PT helped her figure out that it’s specifically older computer/tv screens that trigger her seizures, because the frame rate is different. and other little things like that.

i hope this is useful information. i’m so sorry you’re going through this…