I am a 63 widow, with 2 grown kids. I have pure autonomic failure, which you can read more about here.
I went on disability in 2004; it took 4 years to get diagnosed. The neurologist whodiagnosed me said they don’t know the cause, and there’s no treatment. Then he discharged me. Because of PAF, anything systematically in my body doesn’t work sometimes. There are many symptoms; too many to list right now. I have 3 doctors a MD, cardiologist and psychiatrist. No neurologist will take me as a patient, so my MD is doing the best he can to help me. I’m pleased with him. He said I’m too complex. This is why I can’t get a neurologist. I can’t be handled proactively.
I feel very lonely having PAF. I get very frustrated with my symptoms. I end up in the hospital because I can’t urinate, or my BP dropped when I stood so I fainted or fell. There are many other reasons too. If I could make a wish, it would be having a medical letter explaining what I have and that it’s important the hospital take me seriously. I’d take it to the hospital every time.
Plus, no one understands why I cancel plans or reschedule appointments at the last minute. My kids don’t believe me. I’ve sent them various articles from Dysautonomia International. It doesn’t help. There usually isn’t an article specific to PAF. They’re very good to me. I am blessed.