Diagnosed with Lupus, yet ANA is negative
I was just diagnosed with Lupus by my rheumatologist, yet my primary care does not think I have it because my ANA was negative. I realize you all must be so tired of reading everyone's symptoms, but I really need some answers and would be very grateful for anyone willing to share their thoughts.
rashes after being in the sun (started in mid 20's, never was problem before)
horrible puffy rash on both legs from knees down (went away with hydrocortisol)
hair began thinning (no patches, just overall thinning out)
ringing in ears
eyebrow and eye lid will puff up like balloon for a day or so then go away
all other blood work fine
episodes of tachycardia
elevated sed rates 44 and 40
severe peripheral neuropathy (doctors thought it was MS, but MRI of brain was clear)
(numbness, tingling, incorrect sensations etc)
restless leg and periodic limb movement disorder
sharp stabbing pain in chin
central sleep apnea
swollen lymph nodes for no obvious reason
pain in chest that i don't think is related to heartburn
muscle pain (burning)
waking up with stiff joints
feeling of electrical currents running through limbs along with low grade fever
chronic hives (just about every day)
rash on face, neck and legs after hot shower
all of the above plus
swelling of ankle
vestibular neurtitis (violent vertigo)
chronic low grade fevers especially if I go out in sun
feel like I'm coming down with flu if I push myself even though I have not caught anything.
Pain in feet becoming severe
severely dry eyes
fatigue is now debilitating
ANA positive speckled 1:40
so long story short, my ANA was negative twice and once it was positive at 1:40. my doctor knows my mother had an autoimmune disease with a much higher ANA titer and he seems to think my malar rash (along with the other symptoms) really points to lupus. he put me on plaquenil 400 mg which I just started.
I am certain I have some autoimmune disorder and it sure does look like lupus, but my primary care said with two ANA's coming back negative and the other being so weak, she doubted I had it. The subsets were all negative as well. Please help. I don't know what to think. I just want to know what this is, so I can be proactive about it.
I should also mention that I have been tested for lead, vitamin deficiencies and lymes and that all came back fine.
Any thoughts on this would be tremendously appreciated. Thanks.
Well, so far no thoughts on my situation. I hope my user name isn't offending people, but it's what I've always called myself long before I ever knew what lupus was. It helps me to have a sense of humor about it.
I had also posted something in the Introducing section several weeks ago and it said my post had to be approved by a moderator. So far it has not shown up. Maybe I should find another forum.
All the Best,