I am so frustration with the whole healthcare issue with FND. According to doctors there is nothing wrong with me, I am completely healthy, but when I go to the only Neurologist I can find here in my State here in the US he diagnoses me with FND/FMD, but can't do a dang thing for me. I can be referred to other programs like Mayo Clinic, or Frazier clinic in KY, but my insurance won't approve or deny treatment, they tell my doctors not me that I can go at my own risk. I've been out on disability since October last year due to the issues with FND, and am now on unpaid leave because I can't even get approved for long term disability that I have paid into for 20 years, and can't get approved for social security disability.
I just can't believe that no one can figure this crap out, or be able to help. I've done therapy, (doesn't help), done MRI's, Looks awesome, did an EEG, but was done years before the PNES started. Suffer from Dystonia, Myoclonic jerking, slurred or messed up speech and/or hoarse voice, messed up gait, PNES, pain, fatigue etc.. etc.. It has to be coming from somewhere. All I am told it is psychogenic, and no other testing is done. I am so frustrated, and just wish there were some REAL answers. I just want to get my life back. I truly hate this crap!!! What other things are you all doing to get help? What kind of tests have been done to rule out other things? I would love some help, or suggestions.