Doctors Passing the Buck : Yesterday... - Functional Neurol...

Functional Neurological Disorder - FND Hope
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Doctors Passing the Buck

Jesdue
Jesdue

Yesterday morning I saw my physical therapist and I was having leg tremors (which have been going on the past week,) so she told me to contact my primary care. My primary care told me to contact my neurologist. My neurologist told me to go to urgent care. Urgent care told me to see a psychiatrist. I went to the emergency mental health services and they told me to go back to the neurologist. I'm shaking like mad and my legs and now my arms too hurt from me jerking them all the time. The psychiatrist said what I have is worse than a tremor but not as bad as a seizure. I guess I'll go back to neurology tomorrow? Does anyone have any experience with doctors passing the buck like this? What can I do?

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Jesdue
Jesdue
in reply to Hidden

They didn't ask me any of those questions, but I am a rape survivor and I have a diagnosis of schizophrenia. The county is going to send over someone to bathe me so I'd say this is pretty debilitating.

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HiddenThis reply has been deleted

Hi. You say you have a diagnosis of schizophrenia, and you now have tremors/ jerking muscles.

Have you been tested for Anti NMDA receptor antibodies?

Jesdue
Jesdue
in reply to lily82

I have no idea what those are, so probably not. Tell me more please.

lily82
lily82
in reply to Jesdue

healthline.com/health-news/...

I've suffered with psychosis on and off for most of my life. And in the past few years I developed violent muscle jerks, and all kinds of movement disorders. I was initially diagnosed with FND. But I recently tested positive for this antibody and am now waiting to see a neuroimmunologist.

It's worth a try? I'm not sure how things work in the US, I'm from the UK. But you could ask your neurologist if they can test you for the antibodies.

How is your diet? Are you sensitive to any foods, like gluten? I found that some of my psychosis symptoms eased up when I gave up gluten.

Jesdue
Jesdue
in reply to lily82

Okay. I've had psychosis for nine years and FND symptoms for two years. I think doctors dismiss my symptoms and take me less seriously because of the schizophrenia.

lily82
lily82
in reply to Jesdue

Take this article with you to your next appointment.

No doctor should diagnosed FND on the basis someone has mental health issues- because MH issues can be from an underlying neurological problem.

Jesdue
Jesdue
in reply to lily82

They diagnosed FND cuz they couldn't find anything else.

To stop the tremor have you tried using the hand (can be a leg tapping) that has not got a tremor slowly tap your leg and concentrate on this and should stop the tremor if it’s FND. I use this meth to control my arms and leg tremors. Hope it helps please let me know if it works for you...

The reality is none of them have a clue. There are only allowed to practice medicine that has been extensively researched and proven to do well so when you've got something where there is almost no research all they are willing and able to do is nothing.

I found using TENS machine stimulation helps remind my brain where my arms and legs are and reduces the tremor and jerking. It's definitely worth a try. Good luck xx

I have been through this kind of situation too and after going through all of that I finally figured out that nobody really understood, or wanted to take the time to understand what was really happening with me and the sooner I let go of the idea of getting answers, the better off I was.

In my family, culturally, we just do not go to doctors, I gave birth to both of my kids at home and always avoided doctors. When I started getting seizures, tremors, leftside numbness, fatigue, nausea etc. I was so confused, went from perfectly healthy to barely living. I live in a very rural area in New Mexico so I had to travel far just to get to an ER, where they usually assumed I was a drug addict or a diet pill popper. I've gone to three neurologist, travelled as far as Mexico, an infectious disease doctor, half a dozen ERs, two acupuncturist, a natropath etc. etc. It was seriously frustrating and heartbreaking to feel like I was getting worse and worse and being sent on wild goose chases with treatments.

Once I decided that I was going to figure out my own path and f those doctors who told me they didn't know what was wrong but I would likely only get worse until I was in a wheel chair, I slowly started to get my life together, with diet (ketogenic), exercise, and medical marijuana oil.

I decided that no matter what I would keep going and I wouldn't stop. I would make myself go for walks everyday. and if I could run then I would run, if I could ride my bike I would do it.

I feel a lot more in control in my life now, right now I'm struggling with pain, and doing my own research on therapies. Doctors were telling me not to look things up online because of misinformation, but that's a bunch of BS. I'm a librarian, part of our education is to be able to find reliable information.

anyways I feel you, its really hard to be sent in circles. I hope what I wrote was helpful, know you are not alone. Hang in there!

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