Yesterday I had my first visit with a Dysautonomia Specialist. Dr. Phillips was very nice and understanding, as well as the rest of the staff there. I will say this, that it is the first time during this whole ordeal that I felt like a Dr. or nurse truly understood what I was dealing with! Anyone dealing with dyautonomia should definitely find a specialist! http://www.mvprolapse.com is the link to find more information on the clinic where I am now going.
My appointment was at 8:30 am. I arrived a few minutes early and didn't wait long. I spoke with a nurse and she asked me more questions. I had already answered 163 questions on a scantron that I had recieved in the mail. The questions that she asked me were questions that yes/no answers wouldn't be appropriate. Her office was nice. She had lots of pictures of children. I'm guessing they were her kids or grandkids. She was very polite and nice. I then was asked to put on a gown and wait in a separate waiting area. Since the gown didn't cover me as well as I would have liked I simply slid my t-shirt on over the gown. I admit that I probably looked silly, but walking with a walker and an open front gown was not my idea of keeping myself relaxed! My next stop was to have another echocardiogram. This didn't take long and I was asked to wait again. Then I was taken to the Tilt Table Test. The nurse was a very sweet person. I got up on the table and laid down and she attached some leads and cables to monitor my heart and a blood pressure cuff and then I was strapped to the table. I lay there and she got a baseline of my heart rate and blood pressure. She explained everything in detail, but not in a way that would be confusing. Then I began the test. The table slowly tilted upwards bringing me to a standing position of 60 degrees. You are standing, but not quite standing. I would remain in this position for 10 minutes while she monitored my blood pressure and heart rate, and I was to tell her every symptom I felt as I felt it. If there was any change I was to tell her also. During the test my mouth began to get dry and she gave me my water. I finished all of it and continued standing there. The last 4 minutes seemed the longest because by this time I was weak feeling and very fatigued. I'm not sure what my heart rate reached or what my blood pressure fell to, but I was later told that the Tilt Table did indeed confirm my dysautonomia. My heart rate climbed rapidly and my blood pressure fell. Not alot but it fell. I was lowered back to laying down, and it only took about a minute for my body to re-stabilize and all my symptoms dissipated. She allowed me to take my time getting up and we talked. We talked about my meeting my husband online, and how long we've been married. We talked about my 2 beautiful girls, and then how all of this summer has been hard due to my body just going all hay-wire. I talked about how God has been working everything out and that I just have to trust in Him. She agreed and she hugged my neck. Not a wimpy hug... but an I care about you hug. She told me she would be praying for me and that she knew that God was going to take care of this. How often do you get that response from a nurse? I never have! She was truly a blessing to me! I then waited in the waiting area for Dr. Phillips. When time came for the chat with her, I was hopeful yet nervous. I sat down and something about her face seemed to calm my nerves. She asked what my main reason for seeing them was. I began explaining this summers events. Then she began to tell me that I did have dysautonomia, and the tests proved it, but that my newest problems (the stroke like symptoms) were not caused by dysautonomia, and my heart fell. Yet again I was faced with no answers! But what she did surprised me. She paused and she gave me time to absorb this. Her face was genuinely concerned and kind, and this seemed to pass on a strength I didn't have to allow her to continue. As I gathered myself, she handed me a tissue, and continued. She said I would need to see a neurologist. Because I had already been told no by 3, I began to think "What am I going to do?". She explained that my symptoms were most definitely something neurological. I told her how at the ER the Dr. said that it was not because my scans were clean and he told me to see a Phsychiatrist. She showed no surprise at this, and said that it is common for Dr.'s to say this when they don't have an answer. She said she needed to examine me, checking my vitals and stuff, and we went to yet another room. She checked my heart rates and blood pressure again and then went to get Eric. I got dressed and when she and Eric returned she talked to the two of us together. She had already taken the time to talk to Eric alone. She told us that this looked like Multiple Sclerosis or possibly another muscle disease. I asked her about what the ER doctor said, just to make sure that he was wrong when he said it's all in my head. She told me that the fact that there were things like my pupil not dilating, no pedial pulse, the definite temperature change in one leg compared to the other in the same setting, etc. were signs that something was wrong and that a psychiatrist is not what was needed but a neurologist. She said that she disagreed with the ER doctor. We talked about some other underlying issues, changed my meds and added meds, and my visit was over. I was to follow up with my general doctor, and try and get him to find a neurologist that would see me. I didn't have much hope that he would, because the 3 he had contacted already had told me no. By the time I arrived home that evening I had a phone call from Dr. Phillips office asking me to return their call. Their office was already closed. They called me back this morning, and said that they had found a neurologist that will see me. All I had to do is get all my scans from the hospital and bet there tomorrow at 3:30. And what's even better is the charge is only $70.00!!!
Yesterday I came home feeling torn. On one hand I had found a wonderful Dr. and staff that understands and cares. I was confident that with their help I would be able to get my dysautonomia problems under control and managed. On the other hand, I was terrified. There is a possiblity I could have something worse than dysautonomia (her words to Eric). There is a possiblity that the neurologists still won't see me, and my regular doctor will still think that I may need a shrink more than a doctor. I have 2 children both of which could inherit my dysautonomia and Lord knows what else it is that I have whether it's hereditary! I felt broken and scared. But I knew that God was going to take care of me, after all, He always has! This mornings phone call proved His faithfullness to me once again. So tomorrow I'm off to see my neurologist. I'm praying for good answers, and if there are bad answers, I'm praying for strength. After all, when I am weak, God is my strength.
Side note: I also need a sleep apnea test and hormonal workup later on.... not sure when yet. I'm not on meds for my insomnia, and last night I rested wonderfully!