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this is the first time i've blogged b/c i am not sure what i have. the symptoms keep bringing me back to lupus: severe everyday edema of legs, arms, belly, hands, Raynauds, joint pain, fatigue, sensitivity to sun, difficulty concentrating (noticeable change). it's making my life miserable - i have done EVERY home treatment for the swelling but nothing is helping.joint pain wakes me up at night. the only thing i have never really had is a butterfly rash - just flushed skin or patches of red. i'm 23 years old. recently i went through 4 whole days of feeling like my face was going to burn off and i was extremely thirsty (every 10 minutes i was parched no matter how much water i drunk). i took NSAIDs and that help to relieve the pain and burning sensation. then the weekend came and i was outside and again felt like it was burning off so i kept up with the NSAIDs. now that i am back at work, haven't had the burning sensation, just fatigue. the doc did all the tests incl RA and came back negative except for low Vit D (even though i have a lot of dietary Vit D). the doc is not a rheumatologist. i have read that some of you got negative results too - i didn't know you could test negative in a remission?? i have only had the test once - how many times did you take it before it was positive, if it was? do i need to take the test during a flare up??

thanks

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Hi honey! First of all BIG HUGS!! second has your doctor order a Anti-SR protein antibody assay test? I also think he should immediately send you to a Rheumatologist! You need to be seen by a professional as Lups is called the Disease of a 1000 Faces! Thus so many people not being diagnosed correctly! Avoid the Sun and Alcohol and I would like you to increase your Vitamin D by 4000 units a day! As Vitamin D deficiency can aggravate your symtpoms and actually cause skin cancer! Please let me know how you make out OK? Good luck and health honey!
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thanks bambi27 - the doc did all the lupus tests inclu antibody, etc etc - all neg. just prescribed vit D and also calcium + D everyday. the only thing that the doc said about vit D was that with my diet i should not be vit D deficient so that perplexed her. everything about me perplexed her. but yes, thanks for the encouragement, because i am going to push her to consult with other doctors and refer me to someone who knows how to diagnose. i don't drink/smoke, i eat healthy (have too - can't handle calories/sugar), i exercise as much as i am able (joint pain is very severe and debilitating in waves - i ran all last summer with no problem then suddenly joint pain kicked in and had to stop and went through an incredibly painful fall/winter). my mother has psoriasis and my grandmother has vein issues - so maybe the joints is psoriatic arthritis (the doc suspected psoriasis due to scalp patch/toenail health) and edema from vasculitis, but lupus nephritis could cause edema and lupus explains a lot of everything else. so, a lot of overlap with other conditions - mostly, i would like some way to manage...this..the joint pain i've dealt with for almost ten years, so i'm used to that. at this point the edema and burning/flushing/fatigue flare-ups are the most debilitating and no home treatment is working.

thanks again, sorry to rant.
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No problem honey rant away!!! It is overwhelming when you have physical problems and people treat you like you don't know what you are taling about - or worse minimalize your symptoms! It is EXTREMELY satisfying and even somewhat healing to find out what is wrong! Because when your mind is reading all the "COULD BE...." all of a sudden you have more of the symtpoms - then you actually do! This is why I tell people NOT to punch in their symtpoms and read too much - as I say "you will end up with Chinese Purple Measles"! ;-)
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