I am so sorry for what some of you have gone through and I appreciate your concern and kind attention. I apologize for my late response, I am very ill and typing can eat up all my energy quickly, it took me days to type this message up in note pad so I could copy and post it here.
Just know this person has an extremely rare case that has been going on since they were young, a big part of not being diagnosed properly is because out of the some 40 doctors(some of the best in the country, Johns Hopkins, top neurologists-supposedly) she saw didn’t believe someone so young could have anything wrong with them (she use to be an aerobics instructor). Every year she would get a couple of new autoimmune diseases and/or syndromes, but no one could find the cause and she kept getting worse, eventually her adrenal glands stopped working. Most people just need to take replacement steroids for adrenal insufficiency but in this case, the constant pain factored with with constant stress eating away at her body from the mystery disease made it necessary for her to be on a high dose of steroids for over a decade. The endocrinologist was not happy about it, but every time she tried to lower the dosage she would start to go into adrenal crisis. She also has fibromyalgia, chronic fatigue, erythromelalgia, P.O.T.S., basilar Migraine with aura, tremors, hashimoto’s disease, chronic dizziness, motility dysfunction and too many others to list. It would take a week to explain everything she has and what went on all those years because what I just wrote as it is just the tip of the iceberg.
Anyways in 2017 she was finally diagnosed by a neurologist as to what was slowly killing her through all her adult life. It’s very rare, there is not a name for it yet but in layman’s terms it’s when rogue antibodies just start attacking your autonomic system. In her case she is the only one who ever had 2 rogue antibodies that was attacking her autonomic and sensory system. There is no cure but the neurologist did approve her for IVIG. She has been doing that every 4 weeks for the last 2 years. It has helped. But it has made things worse as far as pain and exacerbating symptoms, she was able to go down on the steroids but the stress of the treatments, the antibodies waging war in her body can prove to be too much and sends her body close to adrenal crisis and sometimes occasionally aseptic meningitis. It frustrates her because her will is strong but her body dictates reality. But now the insurance no longer wants to pay for it. All she wants is Jesus to rapture us home if not just her home.
Please pray for her. Her name is Bonnie, could you pray the insurance company will pay for treatments and that her fibro, nerve pain and basilar migraines goes away and that she is able to have normal bowel movements.
Thanks and God Bless you
Thank you for getting back with us. I am sending up prayers for you and Bonny. I am so sorry you both are dealing with so much. I'm out running errands but I will reply with more later.