I have multiple Diagnosis but the most important one is Autonomic Dysfunction. In addition, I have Autonomic Neuropathy, Autonomic Small tissue Neuropathy, Lupus, and Autoimmune disease of the ear positive for igm against ts-hds Trisultfate-heparin, disacohcade.
It has taken me 10 years for just one of the diagnosis of autoimmune disease of the ear because I researched a test that no one had ever mentioned to me- 68 AKD, which I was positive. I had to research my own treatment because in Reno they treated me with Chemo Therapy which has tons of data showing it doesn't work, I needed autoimmune suppressant. Was sent to 2 Hospitals for skin biopsy's, they turned me down because I looked healthy. I went to Stanford they did the test among many but the biopsy's were positive for autonomic dysfunction ect..
If I would have been diagnosed at the first hospital the damage I have wouldn't have happened. I have since learned I had to become my own advocate, research myself, me organized with my chart. I still haven't received treatment for my New antibody I tested positive with, its been 3 months since that diagnosis. Haven't eaten food in 6-8 months, only small sips of protein shakes and very little fluid, I live in the Er getting IV fluid hydration.. I was a nurse 27 years and became a liability due to drop attacks, you collapse for no reason. I was born to be a nurse and I had to turn in my license. I wouldn't wish this illness on my worst enemy, I feel like I am just alive but not living, you need support, but my support doesn't believe me because I look healthy.
Be your own advocate!, Speak up for your self, research your illness. I have learned how to speak up for my self, ride people butts to get things done, gotten to know my insurance company on a regular basis.
Help others with your disease- I have a support group, web page, Ambassador to your cause, I am an ambassador of the Vestibular Association and Patients like me.
My advise to a new patient is to be kind to your self, don't do to much, listen to your body, listen to your gutt, call your doctors, ask questions, let the guilt go, let the old you go, accept the new person and find your purpose. If people leave your life, leave them be, only surround yourself with people that are supportive. Get the negative energy and people out of your life, you need every ounce to fight! Let the laundry go. Schedule your week with either a chore a day or Doctor's appointment a day. You do to much you will pay. If you get down, depressed, see a psychologist that specializes in dealing with chronic illness.
Don't feel alone. We are all in this together.