updates:
as i think i’ve mentioned before, it’s been really hard to keep track of everything lately so i might be repeating myself on some things but here is what has happened since i last commented on here.
I did a PET Scan and they found FDG uptakes in my head, neck, and left tonsil. I was referred to an ENT specialist & Internal Medicine at Mayo. I did my telehealth appointment with Internal Medicine and the doctor from that specialty is referring me to a few different doctors at Mayo plus she has ordered a few different tests. On Feb 16th i’ll be going to Mayo for blood work, the ENT consult, i have to pick up an Oximetry kit to do at home, and i also have to do a brain MRI. I also am needing to schedule an Audiology test (i’m guessing because i told the doctor about how i’ve been getting tinnitus a lot more often), and i also have to schedule 2 different allergy tests. The doctors she’s referring me to are a dermatologist, neurologist, the Allergist that i just did a telehealth appointment with yesterday that is wanting me to do the allergy tests, and i think there was one other doctor i’m being referred to but honestly i forgot which department/specialty it is. My GI at Mayo is the one that referred me to ENT and Internal Medicine. Also, i did a colonoscopy/endoscopy on Feb 7th. My doctor/surgeon told me she took 2 biopsies and i’m waiting for the results for that, she said my colon looks good, and she thinks i have a stomach infection so she prescribed me 2 medications for that. Not gonna lie, it kind of bothers me that she said she “thinks” i have a stomach infection. She made it seem like she’s not totally positive about that answer, as if it could maybe be something else. But again, as always, i’m trying my best to not worry until i know for a fact that i have something to worry about. I’m still not officially diagnosed with anything and i’m needing to do all of these tests and be seen by all of these different doctors. There’s so much that i want to vent about because i also have some personal issues that i’m dealing with in every day life along with all of this, but i feel like i’d be typing out a novel. I have a therapist that i see twice a month for 1 hour each session, which does help in the moment, but it would just be really cool if i wasn’t agoraphobic and could branch out into the world to make new friends that i could confide in like how i see from other people who can have friends to talk to..and yet my PTSD is holding me back as always. The only people in my life are my boyfriend, his family, and my own family. I feel like with all of these health issues and having to see all of these doctors and do all of these tests..i’m putting too much onto everyone around me even if i’m trying my hardest to keep a lot of it to myself out of respect and appreciation for them. It’s just..a lot. There’s a lot going on.
Hello @notdefinedbyyou! Thank you for the update. I know you’re so stressed out with everything that’s going on right now. But honestly, with this news of being seen at Mayo Clinic, I’m quite relieved for you! You are in the best possible care right and things are beginning to happen for you! Your doctors are finally listening, paying attention and trying to find answers that you’ve been struggling to find for years. You’re seeing the advantage of this outstanding clinic with how seamlessly you’re able to get appointments with all of these different specialists. They work collaboratively to find answers and to offer you hope!
My advice is to just try to go with the flow here…go to your appointments and try not to read too much into comments your doctor is making such as when your GI doctor says, “She thinks I have a stomach infection.”, it means just that. You had a colonoscopy, your colon was healthy…and that’s amazing considering the issues you’ve been having.
So your doctor is going from there…she’s looking for the next most likely cause. That’s why she gave you the two meds to try, to confirm or rule out an infection.
The at home oximetry test is super easy. It’s just a little clip monitor you put on your finger overnight. It attaches to a little device that goes around your wrist to record your oxygen level. You won’t even know it’s on there. I think you already went through the worst of these tests with having to prep for the colonoscopy, right?! 😉
Keep up with your therapy sessions. My feeling is that if you finally have a diagnosis and get treatment underway to help clear up some of these conditions you’re experiencing, you may make a breakthrough with your agoraphobia. You won’t feel so compressed and depressed mentally and may feel more like branching out!
You’re in good hands! I’ll be thinking of you on the 16th and wishing you all the best! And of course, I’d love another update. Hugs.