full image - Repost: mysterious autoimmune disease for 13 years (from Reddit.com, mysterious autoimmune disease for 13 years)
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Hi all. 25FAt 12 I was told I have an autoimmune disease. But my doctor at the time was not really serious about figuring out which one. It doesn't help that my body does a lot of random things and the tests come back normal or inconclusive.Like I developed enlarged lymph nodes that weren't going down. A surgical biopsy resulted in me losing a significant portion of the lymph nodes in my neck because they were damaged and congealed together. The result of the biopsy was "reactive of unknown origin." Then a random bought of hypothyroidism for no apparent reason. My levels were just low and then went back to normal. When I was younger my joint and muscle pain was so bad I had to crawl up my stairs. I was so fatigued I took entire showers while asleep, fell asleep while eating, fell asleep in class, and fell asleep during conversations.At 19 I started having more digestive issues. I would stay up all night vomiting, my intestines were constantly spasming, and I had chronic diarrhea. At 22/23 I found out my ferritin was dangerously low and now I fight to keep my levels high enough, I have chronically low vitamin D despite taking supplements. I have chronic acid reflux. Brain fog and memory issues are also common for me. My joint pain can be debilitating. Writing is getting more difficult, sometimes I have to use crutches to get around because my heel and big toe hurts so badly, and I still have digestive issues. I also have chronic dry mouth and eyes.All of my imaging and blood work has been normal for the most part. The only things I know I have are POTS, small fiber neuropathy, and esophagitis. I had a random positive ANA and a positive IgG rheumatoid factor and a positive anti fodrin antibody. I was told the anti fodrin antibody meant nothing.My PCP is trying, but he's stumped. He gets tears in his eyes when I tell him how much pain I'm in. My rheumatologist however does not share that compassion. His nurse practitioner told me to keep suffering until I develop lupus. She tells me my symptoms mean nothing, that this and that doesn't point to their specialty. She's done more that that but those are the big things. Meanwhile I can't work without pain and risking ending up in the ER and losing my job. She refuses to look into more tests. My insurance won't cover another rheumatologist and I'd have to file an appeal to see one out of network.But I don't know if it's worth it anymore. I'm thinking about just giving up. I'm thinking of just trying to live my life as best I can before the damage really takes hold. I tried that before and ended up in the ER covered in bruises that were not from any kind of trauma, but I'm struggling financially and I can't keep going at this pace. I don't know if I should keep trying to figure out what's wrong with me. I've been trying off an on for half my life and I'm not really any farther than I was before. I don't know how much more fight I have in me for this. I can't even afford to do anything OTC so I'm left to just deal with the pain and dryness (those are my biggest issues tbh). My friend had to get me a cane because I couldn't afford one and sometimes it's too painful to walk. And when that happens I am a lot less mobile.This isn't the life I thought I would have. This isn't the life I want. I'm tired on so many levels, and I'm just wanting to stop seeing doctors outside of my physical. I can't even afford the gas to get to them. People keep telling me I'll find answers, but when? My labs are still normal, my symptoms are still there. Sometimes I feel like it really is all in my head. But logically I know it isn't because I've tried the mind over matter thing and ended up in the ER. I have some things that are explained like the neuropathy. But I just don't know if I should even bother with trying to find a diagnosis anymore.Sorry for the long post, and thank you if you read to this point.Tl;Dr: haven't had a diagnosis for my mystery autoimmune disease in 13 years and I'm wanting to give up on trying to find one despite being disabled by it.
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