I really Appreciate this letter. I recently started having symptoms consistent with DysAutonomia. I have been dealing with it for 4 months now. I went to a doctor at Month 1, after almost passing out after swimming. My symptoms are worst after long periods of standing or exercising, I think this is Probably close to NMS or NMH. I am pre-Syncope. Well, I go to my doctor and told him my symptoms. I told him about my vertigo, light headness, severe fatigue, always feeling tired in the mornings, and muscle ache. I also told him that I normally ran 5 miles a day ;(, I miss those days, and now I have trouble with grocery shopping. He perform a quick check up and then told me that I was depressed. I told him no way I am depressed. I was under a little of stress, so I admitted that, but I did not feel depressed. My inability to exercise was not because I did not want to, but lack of energy and feeling poorly.
I told him I wanted to investigate physical Symptoms, as well as his recommendations of treating this from a mental aspect. He relented and got a thyroid panel I trusted his judgement, so i fill the prescriptions. I took the pills for 5 days. I was still adjusting to life with these symptoms and the pills, lexapro, just made everything worst. I reached out to his office and said I wanted to do some basic blood test. The nurse told me that I wasn't sick and needed to give it a month on the medicine. I told her >.....NO i wanted to do physical testing and that I did not feel depressed. I told her the only thing I was depressed about was their lack of desire to treat my physical symptoms. Finally she said the doctor agreed to let me do a CBC panel. She said it was only to "make me feel better", and "to help me sleep at night". She openly mocked my desire for help. I got off the phone in tears and steaming mad. I was devastated by what was going on and her response and how drastically my life had changed.
So I immediately started looking for a new doctor. It took over a month.... this really sucked not knowing what was going on and being in the dark. Finally I got a new doctor. After my initial conversations with my new doctor, he order 6 bloods test and an EKG. Then he recommended an echocardiogram. I cannot express how much relief and how grateful I am for my doctor. He was open to what I had to say and listened to my symptoms and took actions to diagnose it. When I asked him about the other doctor he said that this was obviously not a mental issues, especially because I was able to run 5 miles before getting sick to not being able to walk to the back of walmart without a break.
I am in my 30s and am in good shape. This has caused every doctor I see to automatically doubt my conditions. I had hypotension at the stress test that caused them to call the doctor from the hospital. I told them before the test how scared I was of doing it, but the nurses just rolled their eyes... I then tried to tell them I was struggling and they just said to keep going, at least make it to 12 minutes. that was when I experienced over a 60 point drop in blood pressure, while jogging. This was one of the most painful experiences of my life. I felt like throwing up, severe fatigue, vertigo, and pain all over my body. The nurse just kept saying... you must be diabetic....:(
If you have symptoms that you think are physical and a doctor dismisses them as mental you have to be your own advocate. You have to stand up and speak for yourself. Don't let the doctor push you around or ignore how you feel. I wanted to trust my doctor but he wasted almost 2 months of my life with no progress to a diagnosis and hundreds of dollars. I am devastated about having this disease, but I am so grateful to having a doctor's office that will listen to me and help me.