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it sounds like I had a Lupus flare up

I'm a 37 year old male. Three years ago I had something happen that I've only been able to call an "event".

It's happened once each year since and still remains a mystery. So far no doctors or specialists I've seen have been able it diagnose it, but at least one friend with Lupus says it sounds like I had a Lupus flare up.

Any help in pinpointing what is going on with my crazy list of diverse symptoms would be hugely appreciated.

Immuno labs for ANA for showed 1:160 on IIF (positive) but 14 units on ELISA (negative). Not sure what to make of the mixed results. However, all Tier 1 SLE Assay results were negative.

Other that a hyperactive vagus nerve, no other tests indicate anything out of the ordinary.

My symptoms that coincide with the "event":
- Body temperature drops to about 93 degrees F for first few nights then hovers between 94 and 97 for several months after. Since the first event, my temp has not risen past 97.7 when previously it used to be a normal 98.6.
- Fingers and toes generally cold and finger pads are chronically wrinkled like they are lacking bloodflow. Have been told that part looks like I've developed Raynaud's. Before the event, you could see heat coming up off my hands I was so hot blooded. Now I hold hot coffee cups like I'm about to freeze while everyone else puts on shorts.
- Hair falls out uniformly on both calves starting on outer edge of each. (weirdest symptom)
- Hair on my head becomes brittle and thins out.
- Muscles become extremely fatigued with even the most basic task.
- Joints are very fragile. Walking across the room can be excruciating. Picked up a gallon of milk the day after the first event and it was sufficiently heavy to nearly pull my shoulder out of socket.
- Chronic dull headache, brain fog and difficulty with memory.
- Free testosterone profile fell from a healthy +700 ng/Dl range to a deficient 307 ng/Dl (my libido similarly fell thru the floor).
- Anecdotally, people said I looked like I aged very rapidly that first year it happened. Went from no gray hair to salt 'n pepper within 3 months of first event.

The "event" seems to coincide with high stress and heavy caffeine usage to keep going. I also get mad cravings for simple carbs (especially sugary foods), whereas before the event I rarely ate anything but complex slow carbs.

This has happened a total of 3 times to varying degrees of severity. I'd like to figure out what is going on so I can fix it at the source.

Any ideas? :/
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replied May 29th, 2018
Hello and Welcome

I appreciate your concern

The labs you reportedly stated arent very clear. Please upload the lab reports if possible.
ANA and subsequently anti Ds DNA should be done to screen and confirm the diagnosis of SLE. The description you gave does not give grounds to start treatment for Lupus. Please ask your GP to refer you to a rheumatologist if you are worried.


Wishing you best of health

Thanks


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