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