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Nov 6, 2018 · Blood Tests & Diagnosis in Autoimmune Diseases

So an update: on Monday, I went to the emergency room because my heart rate was fluctuating between 110 and 140 when sitting, standing, and walking. I checked my Fitbit and my heart rate seems to go from my resting (when asleep) instantly to the 100s range. I was having chest pain, difficulty breathing, and dizziness.This was similar to an episode I had on Saturday and felt I needed to get it figured out. I spent 5 hours in the ER but all the tests came back fine (even though I fell after I got a CT scan done). My ER doctor confirmed that all my tests were fine but agreed that something is clearly wrong and that the cardiologist wants to perform some outpatient tests. I was prescribed a new medication to lower my heart rate in the meantime. I reached out to my general practitioner and asked for a referral to an immunologist and another gastroenterologist since issues have returned. She submitted the referrals immediately and both specialists have actually spent time at the Mayo Clinic and consult regularly/submit referrals if needed. I'm feeling like I'm finally getting somewhere!

Nov 4, 2018 · Blood Tests & Diagnosis in Autoimmune Diseases

Hi, I don't think I'll qualify. I just turned 27 and work full-time so I don't qualify for Medicare or Medicaid, as far as I know. My job offered insurance through Anthem/BCBS. Fingers crossed it's in network or somewhat covered.

Nov 4, 2018 · Blood Tests & Diagnosis in Autoimmune Diseases

Thank you soooooo much for the detailed response. I have looked into all of the tests/labs/etc. you've talked about and I appreciate your recommendations. I will be exploring them further with my provider.

I'm fine with providers who can will be honest with me a say "I think there's something going on. I'm not the right provider, but I think you should pursue it further." But usually, I get the "you're too complex to treat," "the labs are fine and there's nothing we can do," and "you need to lose weight or see a therapist because it's all in your head." I know providers can't always give a diagnosis but unfortunately, I've only had one provider who really believed there is something going on and she left the practice.

I do plan on moving forward with an appointment at the Mayo Clinic in Minneapolis. My job is currently doing open enrollment for insurance, HSA, FSA, etc. I'm going to see what I need for a Mayo Clinic, what will be covered, if I can qualify for the financial help, and put as much money as I can into a HSA or FSA account to help with this process.

Oct 15, 2018 · Blood Tests & Diagnosis in Autoimmune Diseases

Patty, thank you for your response! I agree that it’s sounds like lupus. There have been so many things that frustrate me about this process because I’ve been searching for a diagnosis for years and am just feeling stuck. Of the typical lupus symptoms, I don’t have the seizures or oral sores (at least I don’t think because I haven’t seen pictures that would show early onset). Especially with a EBV test last year stating that I had recent exposure to the virus yet I was diagnosed with it back in 2008. The recent link of EBV to lupus and other autoimmune is something I’m trying to stress to my providers as well. You’d think that I didn’t live in a big city without lots of specialists based off these responses. I’ve been recommended to the Mayo Clinic at least 3 times in the last 4 years because it these things. Ugh. Just so frustrated.

Oct 12, 2018 · Blood Tests & Diagnosis in Autoimmune Diseases

Thanks so much! I appreciate it!

Oct 12, 2018 · Blood Tests & Diagnosis in Autoimmune Diseases

Thanks for the reply! I’ll be sure to check out the post. I’ve been discussing scheduling with a Mayo Clinic with my partner and we both feel it’s time to take the plunge.

I wasn’t able to find the HelloLupus app when I did a search. Is that for iPhones or Android? I was able to get a list of apps other people use when Googling that I might try in addition to MediSafe, Fever Tracker, and Curable (and Fitbit when I can get a new one).

Oct 12, 2018 · Blood Tests & Diagnosis in Autoimmune Diseases

I had a Fitbit and loved tracking food, monitoring steps, and keeping an eye on my heartbeat through it. Unfortunately it broke but I plan on getting another one. So much tracking with chronic illness but I’ll do anything to prevent a flare.

Oct 11, 2018 · Blood Tests & Diagnosis in Autoimmune Diseases

Thanks for the reply! I appreciate it. I'll look into the Mayo Clinic and see if my insurance covers it at all as well as the links you provided.

I keep my test results saved on my personal computer. When it comes to medication and symptoms, I use the MediSafe app for when I need to take PRN medications (e.g., migraines, increased pain, etc.) and the FeverTracker app to track my temperature throughout the day. I find though since getting the disappointing news from the rheumatologist, I haven't been as diligent in my tracking as I used to be. Would you recommend tracking anything else or any other apps that help?