← Return to Undiagnosed Autoimmune Disease - No one will listen to me

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@kassilevon

Hey, I am going through something very similar. Does your insurance allow you to self-refer to specialists? Also, tell your docs exactly which tests you want done and why. Some labs even let you order certain labs yourself. See a Registered Dietician. Eastern Medicine doc. Ideas- yes the MTHFR gene test, nutrition labs (I did ALCAT and Genova), Vitamin B and D levels especially (especially B12!), malabsorption labs, food and chemical sensitivity testing, Celiac, H pylori, endoscopy, colonoscopy, maybe an MRI of brain/spine, LP, EEG, sleep study… whatever else is on your mind. Follow your gut. And be open. But also don’t hesitate to get 20 second-opinions! And consider it all! And have a little patience before you decide on the treatment path you want to take. I know, patience 🤣🤣🤣, I’d let you slap me if you were here! But I’ve learned the wrong treatment is worse than no treatment sometimes. Go out of state. I know that’s easier said than done. My point is, someone will click with you and you will get progress!!! Power on! And when you can’t get out of bed, do you have someone who could schedule appts for you and put you in the car and take you? Maybe find a cheap or loaner walker or wheelchair and ask anyone to drag you to the doctor or to your counselor or whatever you need! This is where I’m at now, as much as I didn’t want to be-and it’s worth it. My family and friends need me to get better and so I try! And I want to leave a good legacy behind. You write your story, not doctors or bosses or anyone else. 🤗💗 Also look and see what research studies are going on, you just might qualify to join one! Seriously! Doing so greatly helped me and found me a doctor that was interested in me specifically! It’s an easy Google search. Go through legit places of course. I am working with the University of Colorado. 😉 There’s tons of studies out there! They usually help with travel plans and costs even! And you can help others at the same time!

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Your attitude and approach is inspirational. Thank you for sharing!