@comptomama, I wish you the best. I can relate with many on this thread.

I have been suffering for 12 years, especially the last 6. I am in my 50s, a single parent of a teenage son with no family support system. My mom had lupus, RA, heart disease, diabetes, Hashimoto's disease, etc. She died at 67 with a heart attack in the ER on Thanksgiving 10 years ago. Her life was very difficult and challenging every day and I recall her always being unhealthy while growing up. Unfortunately, I am struggling with many symptoms like my mom but have difficulty with many generalist/specialist doctors not properly diagnosing me.

I have spent many years and a lot of money (have a high deductible plan) with limited answers or treatment to improve the quality of my life. My son needs me as his sole provider and I am frustrated because I am definitely getting worse. I was just in the ER today (my doctor told me to call 911 due to cardiac like symptoms, chest pressure/difficulty breathing/liver pain, etc.), but after 4+ hours, I was sent home after blood work and IV for fluids (dehydrated, high anion gap blood result showing acidosis). That's it. Told to follow-up with my doctor. I was just at my primary doctor's last Friday due to autoimmune symptoms ( chronic low-grade fevers, weakness/severe fatigue, eyes burn/are dry/feel like I had gravel in them, nausea, pain near liver, vision issues, joint pain, arms/hands/fingers/legs/foot/toes numb, etc.). I wanted updated blood work (came back with positive ANA 1:160 speckled pattern and high CRP showing chronic inflammation), and a referral to a new rheumatologist (the one I went to in the past is retiring but he never was really helpful in diagnosing me). I am also getting surgery next month (July) and wanted to make sure I was okay for surgery. The surgery is an explant due to suspected breast implant illness (have had them for 23 years and both ruptured...scary what you find online...look up BII and the associated cancer BIA-ALCL).

My auto-immune symptoms all started after having my son at the age of 40. The order of diagnoses for the constellation of my many symptoms are: blood work showing positive ANA/RA (2011), spinal stenosis/pain (2011), hearing loss (2017), small fiber neuropathy (2017 punch biopsy confirmed), iron deficiency and thyroid/other auto-antibodies detected (2017), dizzy/fell/broke foot while walking (2018), worsening symptoms 2019 (too many to list), cervical spondylitic myelopathy (spinal cord being injured causing difficulty walking/loss of bladder control which ACDF surgery helped to stop the progression), thyroid nodule (lobectomy ruled out major cancer/removed micro cancer and confirmed Hashimoto's disease), and I am still left feeling terrible. I have left/fired doctors who are not willing to listen, are disrespectful/condescending, and have put in my medical records they thought I was a hypochondriac. Women are not always respected or listened to in health care in my experience so you really need to advocate for yourself and not give up (even though you feel terrible and don't have much energy).
You can prepare for appointments with a list of symptoms/questions but doctors do not have the patience to listen.

Our health care system is broken because patients spend so much time, money, suffering with no positive health outcomes. Patients are left on their own to navigate our overly complicated health care system and doctors get mad when you do your own research online (had a doctor get really annoyed with my questions and what I read are medical journals/articles/research from reputable sites). No one is coordinating our care and we should not have to go to 10 different specialists on our own who are only looking at one small part of your total body. We are full body systems and should be diagnosed/treated as such.

My hope now is in the explant surgery to remove the toxic silicone bags/liners that have been slowly killing me will help. My new rheumatologist is female, younger (mid-late 30s) and may have new training/research and knowledge/skills to help properly diagnose/treat my auto-immune disease(s). The delay in auto-immune disease diagnosis and treatment is killing us. I'm also planning to see a nutritionist to see how I can change my diet to reduce inflammation and autoimmune triggers and detoxify my body. Good luck to everyone struggling with this...you are definitely NOT alone!