My symptoms are random and cannot be detected by EMT or any fancy machine so I’m accused of faking.
that is extremely maddening. it's bad enough when we're not believed for our symptoms and experiences while trying to obtain a diagnosis and even more infuriating when we have a documented diagnosis, especially when we're denied treatments that may be effective for us. You shouldn't have to deal with that. I hope you've been able to find some better suited providers for you since you first posted this. I also was accused of faking my symptoms because they are random and their fancy machines were telling them that I was fine, but eventually I was referred to a movement disorder specialist who had diagnosed me with jerking Stiff Person Syndrome with PERM. I still have issues finding a specialist who is comfortable with treating me and my symptoms and are STILL asking me to record myself when they are happening, but I live alone and only have a caregiver from 10-2 M-F and she only sees/hears in my voice the symptoms. I have also been VERIFIED as having this diagnosis and STILL have been refused tremor medication for several years now! I am not sure how I am going to be able to handle all of these symptoms without having a doctor who will help me!
I hear your deep frustration here... I wonder if searching the net for other specialists in this disease, hopefully in your area, or even calling neurology departments in medical schools might help you to find a provider who can help you to get more care for the tremors? These are just my best thoughts about it in this moment. The only other thought is to try to connect with your current providers' oversight office, if she is part of an HMO. Oh, and have you searched for patient support groups for those with your diagnosis? Sometimes, other patients might know of providers who will prescribe the meds you hope to try. I have MAC Lung Disease and finally got proper evaluations done after going to the top experts, post many errors by regular pulmonary and infectious disease docs. The experts discovered that I have had cystic fibrosis all of life and were able to get me onto a miracle med of sorts that helped my lungs. It took me 6 years to get to the top experts, but was well worth the investment. Thankfully, it only entailed my paying airfare and housing for the 10 day clinic visit, as Medicare and my Medicare supplement covered the medical costs.
I see another reply from you in the my 'moderator que'... I will comment again after reading it.Gina Miller
RareDisease.net Team Member
