Hi, new here! I have had symptoms of "lupus" since I was 7 years old and was diagnosed with Raynaud's Phenomenon. Since then, I have had strange rashes on my legs when it it hot outside, joint pain, strongly positive ANA (speckled titer), elevated SED rate, and a diagnosis of mixed connective tissue disease. I am in the medical profession and know that this is a generalized Dx. I also have endometriosis and dizziness/fainting. It seems like all the symptoms could be related. Anyone heard of these symptoms occuring together or had the same? It would be nice to try to connect all of them http://www.healthboards.com/ubb/smile.gif Thanks, Michelle

You might want to ask your doctor to check you to see if your photosensitive. I got a biopsy for it and lupus. well we already knew I had lupus; so it was pretty much looking to see if I was photosensitive also. im not but that's just something to talk to your Rheumatologist about...

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"It's hard to do nothing. 'Cause even doing nothing makes something else happen."

I've had very similar symptoms for years and years and years! Several years ago - at Disney World - I got this really weird rash on my lower legs after being in the sun all day. An ER Doctor said it was called "vasculitis" and that it was very odd and rare in someone as young as me. I think I was 29. I'm 42 now - and have had repeat occurances on and off - always from being in the sun. Now I slather myself in sunscreen to go outside - and have had no reoccurances. I have also had low-level, speckled titer ANA or negative ANA. I have had odd sores in my nose and in my mouth, horrible fatigue and wandering joint pains on and off over the years. I've had some visual disturbances (flashing lights in my vision - with transient loss of vision).An Optho-Neurologist said these visual episodes are called opthalmic migraine. Have been tested for MS - and these tests are negative. Once had a few weeks of hand numbness and legs tingling. Had negative MTI. I see a Rheumatologist now who says I have UCTD - Unspecified Connective Tissue Disorder. He thinks I may have Lupus and treats me as such. This disease masquerades as so may others - it's so confounding...At least I don't parade around to Doctors anymore and listen to them tell me I'm a "stressed out new Mother"...I know now there really is something wrong and am being taken seriously by my Rheumatologist.

Wow, Meflynn! The rash I get is almost always when we go to Disney or one of the other parks all day! The last time I got it was in May after a day at Universal! I've had the rashes for about 2 years now. They are bothersome and a bit painful, but I've only had about 10 in 2 years, so they aren't that common. The most recent thing has been dizziness and fainting. I am scheduled for an MRI and EEg this coming month. The doctor thinks it might be seizures, but I think it is low blood pressure, since it happens mostly when I am in the shower. I've never been tested for MS, but I have been tested for Scleroderma and it was negative. It seems as though my symptoms come and go, especially in the past 5 years since I have lived in a warm climate. Hang in there! I'm glad you've found a doctor to trust! Michelle

Welcome to all you Newbies!
The rash that you've mentioned sounds similar to what I had, only I got it on my upper arms & chest. (don't wear shorts in public). I wasn't at Disney, but spent two (95 degree) days at a softball tournament 2 years ago before I was dx with AI stuff. It lasted all summer.....sometimes it would look as if it was almost gone, but then if I was out in the sun for a couple of hrs. it would come back strong. I've avoided a lot of sun since then and it hasn't come back.
Six months ago, I was diagnosed with Raynauds, Rheumatoid Arthritis, and a light mix of Lupus. My most recent Dr. dx me with the same, except changed the light Lupus to just 'mixed or evolving' connective tissue disorder and added osteoarthritis, carpal tunnel, and vascular occlusion in my palms. I also have periodic sores in my mouth (not painful) and they occur bilaterally. The dental specialist gave it some AI disease name too. Sometimes I have the pain in my jaw, teeth, and gums, but I thought it might be that the diseases are just attacking another joint and that it's radiating upward.
I have had a few sores in my ears and have occasional spots (sores?) on my face that keep peeling. Some other symptoms I have are fatigue, memory blanks, muscle & joint pain, chills, sweats, and severe problems with my hands & wrists. One really strange one is that my eyelashes are falling out. This has happened before, but they grew back, and this time they're not. (Maybe a medication thing?)
My most immediate problem now though is trying to get an appointment with a new Rheumatologist. I'm on 2 different waiting lists, no appointment dates, just lists!!!
Take care & keep posting, Ann

Michelle - The rash I get on my lower legs - after being in the sun a long time, the Doctors have called "Vasulitis". It's red, somewhat painful, blotchy and raised. I've had about 5 episodes of this since the first time in 1989. I know that Lupus manifests itself in some vasular ways - and I suspect this rash is somehow related to a dialation of the blood vessels in my lower legs. I have what my Rheumatologist calls UCTD - but several times he's said he suspects I have "mild Lupus". I don't see anything mild about it at all - I think you have it or don't... I do have wandering joint and muscle pains on and off, sores in my mouth and nose and can get very fatigued. I have also had what someone just posted about which is horrific facial/jaw/teeth/gum pain. The first time this happened, I went to a BAD Dentist who said I needed my gums scraped. I suffered through this awful procedure only to have the pain in my face and jaw continue. This seems to be related to a flaring in one of the primary facial nerves. I had this happen last week - and got to the Rheumatologist who confirmed this was going on, and put me on a Medrol dose pack. It's been my first flare in over a year. I have had a lot more energy this year - partly due to being on Wellbutrin SR. I've felt well enough to walk several miles a day and have lost the 60 pounds of steroid weight I put on a few years ago. I wonder often if I should go on Plaquenal?? I have been seeing the Rheumatologist the past four years, and he has me take Celebrex as needed - and if something is really going on, a Medrol dose pack. Occasionally I'll have a positive ANA - low speckled titer type and some microscopic blood in my urine. I do tend to always have a high sed rate. Other than these things, my labs are boring. I am reading as much as I can online about Lupus and UCTD. Do you know of other good sites?

Michelle - I forgot to tell you I had an MRI done a few years ago. It was for some odd visual symptoms I was having - flashes of lights in my left eye, as well as dark/blind spots in the same eye. I had this as a teen, and then it went away until I was in my mid-thirties and had had my first son. I started having this again on and off the plast several years. I also had some numbness and tingling in my left hand/leg. The MRI was fine. The Optho-Neurologist said I had Opthalmic Migraine. These episodes are never followed by a headache - I just get the migraine visual aura's. I suspect this ties in with Lupus/UCTD too - perhaps as a flaring of the optic nerve or some kind of exitement of the peripheral nervous system. I havne't had this in a few years - but it's scary. The MRI was easy. I went to a place that does "open" MRI's since I don't like to feel "closed in". I hope your testing goes well for you.

Meflynn- Your rash seem the same as mine. It is usually on my lower legs, but if I have a bad episode, it creeps up above my knees. It is raised, blotchy,swollen, and painful like a sunburn. The thing is, I wouldn't consider myself photosensitive in a literal aspect. (Unless I don't understand the word). I usually don't burn in the sun, I tan well, I don't break out into other rashes, I don't have sensitive skin...The rash appears more in the summer than in the winter and has also appeared when I have jeans on. It seems more of a heat thing than an exposure to the sun. My other symptoms are: 1) joint pain in knees, ankles, shoulders, hips, fingers hands and jaw which as subsided in the last 5 years since living in Florida; 2) Elevated SED rate all the time; 3) Strongly Positive ANA, speckeled titer (all the time); 4) Raynaud's; 5) occasional sensitive spots on my scalp; 6)dizziness. These symptoms used to worry me more when I was 16 and couldn't brush my own hair due to pain. Now, I feel a lot less concerned since I feel better overall. I still have joint pain flare-ups when I have an emotional crisis or when I have a lot of changes going on in my life. I began walking to try to lose my weight...from 9 years on the pill to control endometriosis. I have lost 10 pounds so far and am walking 3.2 miles every other day. It feels good, although I am very sore EVERY morning!! Hope you are feeling good today, Meflynn and Ann!! talk to you soon! http://www.healthboards.com/ubb/dance.gif

Your symptoms sound almost just like mine...is this misery loves company??? I don't have positive ANA readings though - although occasionally my Rheumatologist says my readings are borderline positive, speckled type. What is speckled type ANA mean? I am from Florida (Hollywood) - and never had Lupus-like symptoms growing up. I spent all my growing up years on the beach... I live in Atlanta now and have developed all of this symptomology as an adult. The opthalmioc migraine and some episodes of BAD vertigo were the symptoms I had as a teen. I am walking 3 to 5 miles per day now and that has helped me feel better - plus, I lost 35 pounds doing it. I am just coming out of the jaw/teeth/gums nerve flare - so haven't walked in a few days and I miss it. Hope you are feeling well!

hey guys my diagnosis is APS and one of the things APS causes is visual symptoms like the ones you are describing. it is a vascular disease of a different type, it attacks the blood vessels, veins, arteries, cappilaries, red blood cells, and platelets. this disease is common in lupus patients, and so far it is the only blood work to come back positive. i am now on plaquelin and will know sooner or latter if it will work. also stroke, heart attack and blood clots are more common with APS. sometimes it take a reallky good doctor to run ALL the tests, because the ANA can be run more than 6 different ways. in fact all the lupus tests can be run multiply ways looking foir different versions of the same antibody. i suffer the joint pain weird rashes sunsensitivity and a bunch of other lupus symptoms. so eventually my diagnosis may change to lupus with secondary APS. hope this helps.

I've been debating going on Plaquenil. I amy give it a try - after seeing my retinal specialist. With APS - what are your visual symptoms? I know I have some vascular involvement - I've had vasculitis on my lower legs. I've had opthalmic migraine - which the Neuro-Opthamologist says is vascular. I have borderline positive or negative ANA's, low lymphocyte counts, high neutrophil counts and I've tested positive a few times for pernicious anemia. Right now I'm recovering from facial neuralgia - resulting from a facial nerve inflamation, and tendonitis. I'm on a short course of prednisone. I'm seeing my Rheumatologist again in early August to discuss going on Plaquenil. Do you have more energy on this medicine? When I am symptomatic I can sleep for hours and still feel like I'm not well rested. I've been on Wellbutrin which has helped tremendously with weight loss and energy. What are the tests for APS? Thanks for the input.

I forgot to ask if anyone has ever seen the website by St. Thomas Hospital??? I think it's in England. A Doctor there has a post about "additional" Lupus criteria for diagnosis. Some of the criteria screamed out at me. These are things that some Rheumatologists forget to screen for. Low lymphocyes is one (I'm + on this), extreme reaction to bug bites (+ here too), history of agoraphobia (recovered from this...)... It's very interesting. I linked onto this site from the aboutLupus.com site. I can try to find it again if anyone is interested.

Anti cardioliphid antibodies is one of the tests. the only one i know the name of anyway. visual symptoms can include all migraine symptoms and visual black outs. a good rhuemetologist is the best place to start also search the web for tests.