Xanna

I understand how you feel. That is an issue I am also struggling with. I have had primary progressive Multiple Sclerosis for 27 years. It is the most aggressive form of the disease. It has only been in recent years they even had a medication for it. I have only used muscle relaxers sporadically and use cannabis as my primary medication, diet and yoga for my MS. As with Dysautonomia, doctors do not understand either condition. Since I cannot find a doctor to advise me on what to do, I am going to do my own research and be my own advocate/doctor. I have no choice in this matter. I cannot find a doctor that will see me for atleast a year. If I were you I would keep the appointment to ask any questions you have and base your decision on their answers. You are very fortunate to have a doctor that you can get in to see. In the end, you need to do what makes you comfortable.

I have seen 4 specialist that say I have Dysautonomia. I was recommended to go to Mayo or Cleveland. They don't take my insurance. I have been calling everyone I can find and the eariest appointments I can get are a year from now. I cannot find anyone that can actually answer any questions or give me advice on how to proceed. I have no idea what meds are safe. From what I have researched, I should never have surgery because my risk factor for survival is greatly reduced. That thought alone is terrifying. The only info I have is what I am researching from websites. I am frustrated, scared and have never felt such hopelessness in my life. I have no where to turn for help. They could atleast create an easy to understand website that a patient and their doctor can consult for real guidance. I know that I cannot be the only person to fend for themselves. I cannot express the anger, frustration, alienation and disappointment that I feel.