Introduction

Good Morning,

I've been a lurker for years... mainly in the migraine forum, but most recently here.

In 1992 (I was 12) my body freaked out one summer afternoon at the lake. I jumped into the water to cool off. Once we hopped back into the boat my friend pointed to my legs about 5 minutes later and I discovered they were covered in welts and hives, and my knees swelled up to the point I could neither straighten nor bend them. My entire body, neck down, was swollen and puffy and covered in these welts.

After a few weeks it was determined that I had an "enzyme deficiency" and Cold Urticaria. They said I'd eventually outgrown the urticaria, which has lessened over the years (mostly due to keeping covered and being proactive)...

Out of curiosity I procured my lab results from back then, and there was a barely positive ANA result. And my dad seems to vaguely remember the term lupus being thrown around, but this was 20 years ago and I know technology has changed a lot (and I was out visiting for the summer, yanno - custody and visitation stuffs).

Now things have popped up here and there over the years... I'm allergic to Neomycin (which has Sulfa - my ear infection doubled as did the size of my ear), I was treated once for Interstitial Cystitis, lots and lots of migraines, I can get heat stroke (which feels like sun poisoning), inflamed feet and joints when the podiatrist said there was nothing wrong with the joints themselves, I have tons of broken vessels/capillaries on my arms and legs, and a half-dollar sized heart shaped "hickey" on my right shoulder... and the fatigue... oh my. I can sleep and sleep and still need to sleep some more.

When I was pregnant my belly freaked out and was covered in rashes. I have so many issues with the lady bits...

Most recently, my issues have been with an inflamed gallbladder that's gallstone-less (2 ultrasounds and 1 HIDA scan, possible sphincter of oddi dysfunction?) and a pancreas that gets angry... When I mention lupus to my regular doctor she just looks at me.

I read that Cold Urticaria in teens can be considered a precursor to lupus as an adult. I know I must meet 4/11 criteria.

An ANA test in March was negative, Sedimentation Rate-Westergren was 2. Blood work from hubby's health fair in May shows Iron, Serum at 193 (scale 35-155) and Iron Saturation at 55% (scale 15-55 but I think this includes men and is less for women).

Now the migraines are back, and the upper GI stuff is acting up again, and I've been in the sun too much again, because it takes a day or two to get over the "hangover" (but no rash). I suppose I should see a Rheumy...

SO anyhow, thanks for listening and reading. I enjoy this forum very much and y'all are just sweethearts.

Thank you, Lynnwood... I sure hope so! Even if it's not lupus, someone with insight would be beneficial.

Joie - I tell ya what... I should have paid more attention then, too. All they said was to stay out of the cold and at 12, almost 13, I didn't care about much except I didn't want my friends to see my body freaking out.

The white blood cell count should be on my copy of lab work from the ER visit in March. I'll have to look when I get home. It is crazy that my iron levels are high? And I noticed my TSH level increasing over two months.

As for a rash - I had an ugly looking thing on the back of both arms for the *longest* time. Doctor's always said it was due to dry skin or whatnot, and nothing I did seemed to help. Magically a few years ago it went away. [shrugs shoulders] I remember when hubby and I were dating, for a period of four to five weeks my legs itched SO BAD. I'd scratch them in my sleep and they'd be a dried bloody mess in the morning.

The toes DO turn purple when they're cold... and the lacy rash thing I've seen on my arms and legs (which I also contributed it to circulation and thought it was "normal").

I'd like to find out more about your GI issues... I made myself go to the ER because I thought a gallstone had been stuck (one missed during an ultrasound 5 months before)... but there's NO STONES! I was so stinking mad! I can feel the gallbladder begin to seize, and squeeze, and then comes the stabbing pain through the back - which leads to the pancreas backing up and becoming a ball of fire under my sternum.

And I don't think I mentioned before I've had endometriosis and ovarian cysts and I am NOT REGULAR whatsoever.

Boy, I wrote another novel.. LOL.

I will look into the UTCD. Seems no one wants to talk to me with a negative ANA, even though one was positive 20 yrs ago.

Hope everyone has a pain-less day :)

Laura

Oh you said you had a hida scan. Oops!

I'm being tested for the hla-b27 gene in regards to my back pain. Have you ever been checked for that?

It's odd that your hida scan was normal. I don't know what to tell ya except if it keeps up then persevere with getting an answer. I've always been one to give up because I don't want bad news hehehe.

Colorado?! Well, isn't marijuana legal there now? I ask because there is some very interesting research in regards to its medicinal properties. Especially with autoimmune diseases and inflammation.

I have read that there are even specific strains that when ingested will not cause a real "high" and will target certain symptoms/problems. I find all that incredibly interesting as it's a natural source with a lower risk of side effects. I haven't tried it myself as I would need a permit in Canada and am stuck a little on the stigma, plus I don't like the idea of getting high. But in Colorado I think there is a lot more available in regards to different strains and ways to use it such as in chocolate! Chocolate!

It's something to consider anyway. I hope I didn't offend anyone with the suggestion. The science does back its use.

*ahem* There are several dispensaries within 1,000 feet of my office. However; it's against company policy to partake in the legalness of marijuana. We were joking here a few hours ago that I'd be tempted to try it for these dang horrible headaches and the nausea that accompanies them. I can eat only so much codeine and phenergan.

If you mean you want to see the rules, they are at www.healingwell.com/community/default.aspx?f=46&m=106997 or click "Forum Rules" at the top of the page over on the right, about 3 lines down.

Nothing to be sorry about. To contact me directly, click on the blue-ish envelope under my name on the left of my post.

Not so tight a group, we welcome everyone!