Misdiagnoses - Isolation - Rock Bottom - Google - Final Piece of the Puzzle
For decades, every GP I went to would say my pain was due to stress or act like I was trying to get drugs or they would shrug their shoulders and send me to a specialist. Each specialist I went to would diagnose me with whatever their specialty is (ignoring all the symptoms that don't fit with their diagnosis). They would prescribe medications & biologics that are crazy expensive, and most have horrible side effects.
I've been diagnosed with: bursitis, pulled back muscles, Multiple Sclerosis, Crohn's Disease... I've disagreed with doctors so many times. I don't think it's Crohn's disease because the only symptom I have is abdominal pain and some lesions on colonoscopy. I don't think it's MS because I only had one bout of Optic Neuritis and some lesions on Bran MRI, but no other MS symptoms.
I've been to the ER with chest pain that felt like an elephant sitting on my chest, but I don't think it's heart-related: my sternum just hurts. For over six years I was on Gilenya for MS which costs over $60,000/year and reduces the immune system to the level of someone living with AIDS. I've tired Rebif and BetaSeron injections that made me feel like I had the flu 24/7. I've been on Asacol HD which did nothing. Gastro prescribed Humira, but I refused because it says it makes MS worse and possible side effect is death. Nothing got better. It continued getting worse.
I had told the same story to upwards of 15 doctors:"I know I sound crazy, but I have INTENSE pain that moves around in my body. It kindof stays in one area for a week or so before moving on. It is most intense at night, and gets better around 10 AM. When my gut hurts, the only description I can find is 'my internals are devouring themselves'. I'm tired. My butt hurts almost all the time, but it is sometimes on one side, sometimes on the other. No, it's not my hip joint. It's my butt. My lower back pain wakes me up in the middle of the night and I have to get out of bed and and lay on the floor to stretch. None of this pain has anything to do with activity level and rest doesn't make it better."
Looking back now, I CANNOT believe that all the neurologists, gastroenterologists, OB/GYNs, ER docs, and GPs I saw didn't recognize AS. It got so bad about six months ago that with tears streaming down my face I had to call my husband to pull down my pants and sit me on the toilet because I couldn't move the pain was so intense. (And for the record: both my daughters were natural births - one over 28 hours of labor. This was WAAAY worse.). I literally googled "butt pain at night" and Ankylosing Spondylitis came up.
I have a family history of autoimmune disease. He said no more tests needed. Definitive diagnosis. Since then, I've been scouring the web for personal stories and possible treatments. Right after that last terrible flare, I was finally ready to try anything.
With doctor supervision, I went off all medications. Every morning I take fish oil, pre/probiotics, multivitamin. I drink a smoothie of fresh spinach and kale; beet and collagen peptide powders; frozen blueberries and pineapple; and coconut milk. I've been trying to follow the NSD - no starch diet. I do gentle stretching and try not to overdo it. I went from 140 to 120 lbs and feel better than ever.
I know the diet isn't for everyone, but I do think the leaky gut syndrome and kliebsella and other theories are on the right track. I don't want to sound preachy - but I found it on the internet and just want to make sure if there is someone out there searching like I was that they could find that "AHA, it all makes sense!" moment and have ideas of some things they could try.
Do you use the word disability to describe your AS?