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omgthehumanatee (@omgthehumanatee)

Frustrated and continuing to look for diagnosis

Autoimmune Diseases | Last Active: Feb 23, 2019 | Replies (6)

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Hi @omgthehumanatee. I am a 19 yo female and am similarity frustrated by my inability to function like people my own age. I have a similar list of symptoms (- the migrains, sinus issues have subsided). I had been thinking I am getting lazy in my studies or making excuses but your post has made me wonder if it’s partially the disease. As a college student I am inferiorated by my inability to remember information I have drilled over and over. I am also avid runner and having issues with fatigue, constant muscle injury, and soreness. Frustrated because cardiac workout is only way to tire myself out enough to get good sleep.

I was lucky enough to get into rheum 1.5 mo after my ANA came back high. I went into doc with dizziness, falling asleep with hr in 40s during class, and weakness. Rheum thinks I have MCTD based on titer, likely CREST syndrome. However, Derm diagnosed lupus because of malar rash. Also unknown whether my hr is slow because of cardiac fitness or bradycardia. Recently my hands and fingers have become swollen and sore. Makes taking notes painful. I come home exhausted from school at 5 and can sleep for 10 hours, easily.

Started Placquinol nearly 5 mo ago, it has helped quite a bit but not totally. Also take vit d (morning!), vit C, vit B, fish oil. Also eat gluten free, penut free, and limit red meat, to keep gi issues at bay.

Only ways for me to make it through week: I optimized my schedule to be hard Tuesday, Thursday. I sleep in on Wednesday. By Wednesday I am talking Acetominophen 4-6x a day to minimize swelling and fatigue. Never drank caffeine before, now start day with it and supplement with Monster to keep self moving. I am a mess by Thursday night, sometimes Wednesday. Every week. Used to be active/ studious all day every day. I use weekends to recover (after hard workout Sat morn). I also have to wear gloves if AC inside because my body cannot regulate temp.

Have they tested antibodies for you? Primary doc should be able to do that. Also, I got into Mayo without definitive diagnosis- ask rheum (when you get in) to write down best guess as to what you have as tentative diagnosis.

Hang in there.

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Replies to "Hi @omgthehumanatee. I am a 19 yo female and am similarity frustrated by my inability to..."

Thanks for all the insight. I have had my ANA checked and it’s negative. Higher than earlier this fall though but still within normal range.

My primary also did some other antibodies (a connective tissue cascade and full lupus panel).