Hi. I'm new here and I would love all the input i can get.
I am a 23 year old female and I have been having a multitude of symptoms for about 6 months now. It started with a closed feeling in my throat which an ENT termed 'globus hystericus' and said it was related to anxiety. But then new symptoms started and unfortunately have never went away. These include:
dry throat, tongue and mouth
canker sores and ulcer outbreaks (started when i was 9 but it is much more frequent now)
itchy nose, sores in nose
itchy, painful and bloodshot eyes/ visual problems
severe migraines (regular and ocular)
intermittent deafness and ringing in my right here
dizziness/ lightheadness/ balance problems
pain that radiates from my jaw, neck, temple and right ear
painful breathing/ fluid in lungs
left arm pain
severe pain in my left knee and neck
rash associated with sun exposure (since i was 14)
*new* hot flashes
I have been to a number of doctors. But last week i went to a new doctor who actually listened to me and he told me to go to a rheumatologist and be tested for lupus and sjrogren's syndrome. The rheumatologist can't see me for 2 weeks and i'm scared to death because for the last 3 weeks my symptoms have been getting progressively worse and i shudder to think about the condition i may be in in two weeks if the trend continues.
Please give me some feedback.
Melody, good morning & welcome. A good place to start: check out all "sticky posts" (= permanent info posts) at the top of the thread list. The "Resources" sticky suggests some authors; I know for a fact that Dr. Wallace covers both lupus and Sjogren's thoroughly.
Where are your rashes? What do they look & feel like? Do they scar or depigment? (I'm always curious about rashes because I had photosensitive arm/torso rashes. Frustratingly, 6+ local dermies had never seen my rash. But Dr. Wallace, the author, sure had, and so had the teaching hospital drs. I finally sought out.)
I also was a candidate for lupus, Sjogren's, or both. I was eventually Dx'ed with a "subset" of systemic lupus, no Sjogren's. I tested positive for the anti-Ro autoantibody, which is seen in lupus and/or Sjogren's.
Tests typically done by rheumies include standard bloodwork, specialized autoantibody panels, and urinalysis. Also, a rheumie should take an especially thorough lifetime medical history.
For rashes that may be lupus-specific: I think deep-punch skin biopsy, with immunofluorescent stain tests, is considered the gold standard. If a rash really is a lupus rash, these tests can identify deposits of "immune junk" between the topmost & next layer of skin. Then the additional stain tests can "light up" in a way considered almost totally unique to lupus.
For Sjogren's, a lip biopsy is considered the most definitive test, I think. But fortunately there are "less ouchy" tests as well!
Anyway, I'm glad you're seeing a rheumie & hope that you get rolling quickly. For sure, no one wants this stuff! But if turns out that you do have something autoimmune going on, it really would be best to find out now, in order to get the treatment & follow-up care needed to optimize your life. I hope you keep posting here. Sending you warm wishes, Vee
The rash showed up mysteriously one day when i was 15 and never fully went away. It varies between red and brown and it's always worse when it's hot or when i've been in the sun. It spans from my neck down my back, down my chest/ stomache area and down my shoulders to the crease of my arms. It looks like circular patches. Some singular, some connected to eachother. When it's bad, they are slightly raised. When it's severe, they become painful and have even bled. I've been to numerous doctors regarding this and they all tell me to use tinactin or selsun blue on it...but it never responds. I've just learned to deal with it.
What's strange is that for the past 6 months i really have felt awful. I just felt worse and worse every day. But today...I feel a little better. My eyes are the only thing bothering me today and my knee hasn't hurt in a few days. I got really sick for about 3 days and once that subsided, i started feeling better overall. It's like i had a weird flare-up of something. I'm definately still going to the rheumatologist because i know this isn't normal for me, and since both my grandmother and great grandmother had peripheral neuropathy (which i read can stem from lupus) i know i might be at risk.
Melody, good morning. Has a dermatologist done a skin biopsy? FYI, even REALLY good dermies very often can't know what a rash is merely by looking at it. I once read that there are something like 17,000+ named skin conditions.
Another possible specialty: A small group of dermatologists are credentialed in BOTH dermatology AND pathology, meaning they're dermies who do THEIR OWN labwork. They're called "dermatopathologists". They probably gravitate to teaching hospitals.
My rashes turned out to be SCLE (subacute cutaneous lupus erythematosus), the "annular" form (meaning targetlike). There's a second SCLE rash called papulosquamous, which resembles psoriasis (but isn't). People with these rashes very often (not always) test positive for anti-Ro, the one I mentioned earlier that's seen in both lupus and Sjogren's.
In mature form, my lesions were targetlike, appearing on photo-exposed skin on upper arms and back. They didn't itch, hurt, or bleed. Lesions actually began as red raised papules that resembled mosquito bites (but no itch). Next, the papules expanded into perfect circles with clear centers. As the lesions aged, the circles expanded even further, lost perfect circularity, and merged into one another. Last step: they disappeared. Next step: A NEW BATCH! By the 8th year of this nonsense, I had rashes of all ages simultaneously.
I saw many local dermies, all incapable of Dx'ing my rash or of even ordering the most appropriate tests. In contrast, the teaching hospital drs. I finally saw recognized my rash in maybe 1 second flat, but of course ordered new tests (deep-punch biopsy with stain tests) for scientific proof.
So that's why I'm always curious about rashes: I understand how frustrated one becomes when answers aren't forthcoming, esp. when your rash feels correlated to your OTHER symptoms. I hope you keep posting here. Sending best wishes, Vee