I believe something is seriously wrong....

I'll try to keep this short. Last year March, I saw the campus NP for what I thought was anemia. My roommate had it apparently and suggested it to be a cause. I was very cold, feeling tired sometimes, and had lost 10-15 pounds in only a couple of months, going into the fall semester. Blood work came back "normal." Ferritin was 29.

That summer, I saw a NP for what I thought was migraines. She told me to just take OTC pain meds. I've been getting this eye pain for several years now, but that’s all it is – eye pain. It doesn’t affect my head. I also got prescribed H2 blockers for silent reflux. They didn’t do anything. I went through a bottle of those and 2 bottles of Tums that summer, but nothing worked. I chronically clear my throat.

That fall, I went to urgent care after 4 sleepless nights of a crawling sensation on my body. It was - and still is - like a pins-and-needles feeling but more spread out. Blood work came back normal and was told to lay off the caffeine. Funny thing is, I don't typically use caffeine. Anyway, I eventually got used to it.

2 months ago, I started really getting a feeling something was wrong. Overwhelming fatigue overcame me beginning in November. This is also when the brain fog set in. The pins-and-needles started getting painful shortly after this point, too. I made an appointment with a new doctor. I was so excited - this was it! The moment I find out what's wrong with me. Sadly, all she “diagnosed” me with was anxiety and PTSD. I drove to a nearby parking lot and cried while talking to my mom on the phone. I felt helpless, belittled, and unheard. How anyone can see someone for 15 minutes who’s in pain and send them away with such a degrading diagnosis that isn't even true is beyond me.

I saw a NP that day on campus too, who said the same thing, but only because I was stupid enough to trust her and tell her what the other doctor said. The nerve pain got as bad as it’s ever been after that terrible day. It was really noticeable and painful in my hands. They get really cold and sometimes very hot. New symptoms like tinnitus started appearing. Then, all of a sudden, it all went away, except for the symptoms I’ve had since October. What’s also noticeable is my gradual average resting heart rate had slowly climbed from August to February. It became alarmingly high, around 110-150. I wear a Fitbit. After that terrible day, it started declining a bit. But I also tested myself for POTS without a tilt-test table. I definitely have it, and I don’t need a moving table to figure that out. Another doctor said I had autonomic dysfunction. My blood pressure gets low, and so is my body temperature. I feel like everyone just thinks I’m begging for attention, but that’s not my intention at all. Almost half my hair has fallen out. They question me of being anorexic or bulimic, but I eat 2000 calories a day!

Please, what could be going on? I am not going to let anyone tell me that my intuition is wrong. I know my body more than anyone else, and I’ve heard horrifying stories of sexism all over the internet of women and their journeys through figuring out their diseases, particularly autoimmune diseases. I am part of the 4% of the white population with the homogeneous genes for MS. But something tells me it could also be Lupus. I have those genes, too. To my surprise, my 16 year old cousin has the exact same symptoms as me. So whatever it is, it’s hereditary. I’m working so hard surfing PubMed to find the answers for us both. It hurts to have doctors call me a hysterical female, but to do it to a 16 year old girl! I can't believe people so cruel exist. Thanks for any help….

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