Misdiagnosed multiple times I need answers

My mom has helped with caring for my son but I’ve been trying to get help from the government I can’t really get any disability benefits unless I have a diagnosis

which I do but it’s not clear I say this because back in March a test was performed on me without my knowledge it said I was positive for anti NR1 antibodies which is NMDA encephalitis the hospital I went to thought I was crazy or I was making things up that didn’t happen to me

I found this out by getting my medical records but before I got my medical records I had seek help from multiple specialists spine specialist/neurologist/rheumatologist and they did test and saw nothing medications aren’t helping me they are going based off what that hospital said about me and it’s hindering me from getting the help that I need and have been seeing for the last 6 months

I was just seen at another hospital June 10 stayed there for 25 days left on July 2nd they repeated the NMDA that I found in my records and it came back negative they said it’s unlikely to have a false positive but in my case anything is possible and I’m now in acute rehab and they are trying to treat the pain I wasn’t able to do therapy today because I could barely move anything everything in my body hurt

I went to ER for broken ribs (7) and they found lots of other issues that they wanted me to follow up when I was out of the hospital. Most of us with weird symptoms have a list of specialists. All of your symptoms may not be connected to one diagnosis. For joint/back pain, go to orthopedic for images and then a referral to Physical Therapy to help with balance, muscle strength and joints. Visit an ophthalmologist (DR) for issues with your eyes. Switch to a non-processed diet, avoid sugar and aspartame, preservatives, moderate potato, tomato, wheat and dairy. You may notice others that you need to avoid; Mediterranean diet, AIP or Terry Wahls have good recipes. Make sure you get some movement, each day. There are plenty of moves that can be done in bed. Finally, make sure you are staying hydrated and eating enough food - lots of time when we feel ill, we stop doing this and it gets worse. You might request a panel for autoimmune disease, like Lupus, fibromyalgia, MCTD. Diagnosis and meds will help, but diet and movement are huge, also.

@nastashian - I’m certainly glad that your mom is able to help you! And rehab should help you get your strength back—your toddler needs you!
You might lose try keeping a daily journal to track all of your symptoms. Each day note the ones that have bothere you the most that day. Include what brought the symptom on, how long it lasted, and what you did to treat it. Try to rte pain and fatigue from 1 (not Much) to 10 (awful). Having this to show a doctor is very helpful.
Also have you read “Brain on Fire” by Sarah Callahan? Excellent book by someone who found herself is a situation similar to yours.
What do you think of the journal? Think it might be of help? Becky

you are absolutely correct! I was a patient at the Mayo Clinic. My lead neurologist ordered tests in Cardiology, Gynecology, lab work (for multiple sclerosis and other things). My Mayo neurologist took the lead and ordered all the tests. I wholeheartedly recommend a complete workup by Mayo Neurology if you ever have a question as to what the proper diagnosis is.

Sounds to me like you might have a thing called CAA or some form of encephalopathy, or cardiomyopathy. But what you really need is to contact one of the better genetics labs, such as Nebular, or Dante Labs, or Sequencing.com. get on line for a whole genome sequencing, along with analysis. Then talk to a geneticist or genetics counselor. oldkarl