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Sun, Feb 23 5:02pm · Looking for People Diagnosed w/Autoimmune Autonomic Ganglionopathy in Autoimmune Diseases
Thank you! I am glad that you are feeling well.
Sat, Feb 22 11:15am · Looking for People Diagnosed w/Autoimmune Autonomic Ganglionopathy in Autoimmune Diseases
If you have the above diagnosis, please reach out to me. I just want to chat with others who experience some of my same symptoms and learn what works for you. Also, if you’ve done the Corticosteroid infusions and Rituxab treatment, I want to know your outcome, as I am considering the treatment.
Thanks! Sending much love and light to all.
I would have your doctor call for a physician’s consult with the appropriate doctor. I had my neurologist contact the neuro-immunologist who is my primary doctor. Mayo declines many cases and only takes the most complex cases that they believe cannot be properly handled by doctors outside of Mayo Clinic. I’d this is you, you want your doctor to call and advocate for why your case fits into this category. All three of my doctors explained that they just don’t have the capacity to handle every request, so the cases that they believe they can do more for patients than outside doctors.
I also go into appointments well prepared. As someone who has always been amazed by the body, studied pre-med and am a science nerd, I could have never imagined that my life would depend on my advocating for myself. Like you, I’ve had to replace doctors and assert myself because they refused to listen or dismissed me.
I just returned from Mayo Clinic, in Rochester. My primary doctor spent over three hours with me. The other sub-specialists to whom he referred me spent over two hours with me. They listened to me, unlike 14 of the 17 doctors I saw over almost five years, before being diagnosed. They were also pleasant and at least compassionate. But I agree that there are good and bad doctors everywhere and we must still participate in our care. One of my doctors apologized and said she knows doctors have and can do damage, which I experienced in my journey to a diagnosis.
Keith, you are correct…there is much for which to be grateful. Blessings to you and your family; may you have a beautiful Thanksgiving and holiday.