[chrimullins]

i am a 35 yr old white female .my younger brother by 1 yr was diagnosed with lupus about 9 yrs ago. it affected his kidneys and he had to have dialysis until he had a gastro bypass to lose weight to have a kidney transplant which he finally recieved last yr. he is doing well with no more problems as of now. i was diagnosed with thyroid problems 3 yrs ago and been on med for that since. i was checked for pcos which was negative then also.last yr found out i had high bp problems and was getting migraine headaches and feeling fatigued, depressed, and would get light headed. dr put me on bp med, anti- depressant and i had low iron so iron medicine. earlier this yr he ran a anu blood test for lupus and it was negative but was concerned about another test and he was going to redo and hasn't. a couple of months ago i had a rash on half of my face (just nose and rt cheek) which then spread to neck and chest then belly and upper thigh of left leg. as it spread downward the rash went away from the upper area. dr thought possibly allergic reaction to something even though i had not switched any cleaners. rash is gone but now have sores in mouth on my gums. i had one yesterday morning and by bedtime there was 3.i am still fatigued all time and thyroid levels are under control along with bp. still believe that it could be lupus . i also have joint pain all the time pretty much every where.and i have white patches on my hands and inner thigh ( dr said basically same thing micheal jackson claims is his problem with coloring).

 

[LolaLola]

Hello and Welcome here,
I am so glad to hear your Brother is doing well. Sorry you have problems and don't feel well. I hope you will get some symptom control and a diagnosis.
X Lola

 

[Maia]

Welcome to the board - but of course sorry for the health concerns that have brought you here. It's a frustrating position to be in - sick but no diagnosis and no treatment. Just keep at it - get second opinions from specialists in autoimmune disease if possible. Have you received any symptomatic treatment yet for the joint pain or facial rash?

Some here were only able to be diagnosed via a skin biopsy, so if the rash(es) return, it may be worth it to see a dermatologist for treatment and let that doctor know about your constellation of other symptoms and your family history of lupus.

Have they ever tested for the additional auto-antibodies such as the ENA panel or anti-cardiolipins and lupus anticoagulant? Many places will not unless the ANA is positive, but some people will be ANA negative but positive on SSA for example. Your migraines could be associated with Anti-Phospholipid Syndrome (APS or Hughes Syndrome) so it may be worth it to get tested for those clotting antibodies in particular.

Good luck to you, I hope you get some answers soon to what's causing all those symptoms as well as some helpful treatment.