Trying to link symptoms - Lupus Message Board

Batch1214 · 06-08-2001, 05:03 PM

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

Thanks, Michelle

EMT · 06-09-2001, 03:29 PM

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."

meflynn · 06-29-2001, 08:48 PM

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.

Batch1214 · 06-30-2001, 07:06 AM

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

Ann S · 06-30-2001, 12:41 PM

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