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Goldensundrop
Regular Member


Date Joined Jun 2010
Total Posts : 23
   Posted 6/10/2014 9:49 AM (GMT -6)   
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.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 6/10/2014 10:31 AM (GMT -6)   
Yes, it might be informational to run your more recent (last 10-15 yrs) past a rheumy. Perhaps they can make sense of it!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Goldensundrop
Regular Member


Date Joined Jun 2010
Total Posts : 23
   Posted 6/10/2014 4:56 PM (GMT -6)   
Thank you, Lynnwood... I sure hope so! Even if it's not lupus, someone with insight would be beneficial.

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 6/11/2014 6:50 AM (GMT -6)   
Hi Goldensundrop and welcome :)

I became allergic to cold around the same age although it took me another 10-15 years to figure out what it actually was. When I was diagnosed with cold urticaria the allergist mentioned I had likely an autoimmune disease. I honestly didn't pay much attention at the time.

I have recently been diagnosed with UCTD/lupus at age 38. I had some nerve testing done a week or two ago and the neurologist mentioned that Cold urticaria is usually part in parcel with lupus.

I have had GI problems it would seem my whole life. Last year I had to have my gallbladder removed as a stone had blocked one of the ducts and almost caused it to rupture. I was baffled as there is no history of gallbladder problems in my family. I still have many GI problems.

Any idea what your white blood cell count is? Mine has been elevated since my teens consistently. I always wondered if it was linked to the allergy.

I always have a rash somewhere. Not always the hives from the cold either. I spent too long in the sun two days ago and now have blisters on my feet arms and a few on my face. Itchy as itchy can be! The ones on my face don't itch, they are just super sore. I get that sun hangover feeling too.

Do your toes turn purple in the cold? I've have raynauds since my teens as well. Also the purple lacy "rash" called levido reticularis on my legs and arms. I just thought it was bad circulation but these are linked to cold as well and connective tissue disease.

Anyway, you aren't alone my dear! Deff get yourself to a rheumy and bring a list with you. Don't make the mistakes I did and brush some things off as "just getting older" and "my stomach is always a mess, I just have a sensitive stomach" and "I'm just a rashy person" lol.

Warm hugs :)
Joie
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

Goldensundrop
Regular Member


Date Joined Jun 2010
Total Posts : 23
   Posted 6/11/2014 8:23 AM (GMT -6)   
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

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 6/11/2014 11:22 AM (GMT -6)   
My iron levels are low generally so I don't know what that could mean.

As far as my GI stuff, well when I was in my early 20s I had diarrhea for 8 months and lost 48 pounds. I have always been that way on and off since I can recall. I also throw up alot. I have pains in my stomach, upper,lower,sideways and upside down lol. Ulcers, gallbladder, what I think may be pain in my pancreas. Undigested food, constipation.....you name it and my whole life pretty much. I just attributed it to having a nervous stomach. The only two things I ever have had checked are my gallbladder and ulcers because they were serious pain.

The one thing I have never had a problem with is heartburn if you can believe it!

Sounds like you may need a hida scan or whatever they call it. Where they test the gallbladder function.

My ana is borderline. You don't necessarily have to have ana to have lupus. It also may not be lupus but it sounds like you have something going on. My rheumy still isn't 100% convinced I have lupus but she is treating me which is the important part. Find a rheumy that listens and isn't old school. Are you in Canada,US? UCTD just means there is something there and they don't know what it is yet. Sometimes it can take years for a specific disease to show definitive markers. Sometimes it never does.

How's your back? Any sciatica or anything?
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 6/11/2014 11:23 AM (GMT -6)   
Oh you said you had a hida scan. Oops!
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

Goldensundrop
Regular Member


Date Joined Jun 2010
Total Posts : 23
   Posted 6/11/2014 11:56 AM (GMT -6)   
The HIDA scan showed everything was normal - I guess... and that's the weird thing. The gallbladder acts up whenever it wants regardless of ice cream, eggs, butter, Oreo cookies, milk, booze, spicy buffalo wings... You name it. Last time it got angry was due to a chicken taco. I've eaten dozens since then without an issue.

As for the back - my neck, upper back, and shoulders almost always hurt. I have mild scoliosis and had five months of therapy when we lived in Texas (just over a year ago - I'm now in Colorado). My head is forward an inch from where it should be, and the neck has lost most of its natural curve. *sigh* I'm only 33 and always have lots of shoulder/back pain, and when it's worse, so are my tension headaches/migraines.

I was poking around in the Fibro forum... I'm also "double jointed" in my shoulders, arms, and fingers/thumbs... Who knows. I just get so tired of the fatigue and not feeling well.

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 6/11/2014 1:31 PM (GMT -6)   
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.
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

bblbt
Regular Member


Date Joined May 2014
Total Posts : 184
   Posted 6/11/2014 3:29 PM (GMT -6)   
Wrt legal marijuana, I willing tried it a while back as the prefect guinea pig - I'd never tried it before and I wasn't on any other pain killers. A friend has it so he set me up and I was amazed at how well it worked, extremely effective for me - both quickly and long lasting. I'm not promoting it in anyway and I don't use it now, just the one time to see if it did offer a potential solution. Just an observation and it puzzles me why people would deny it to others that could truly benefit by it for their medical/pain issues.

Goldensundrop
Regular Member


Date Joined Jun 2010
Total Posts : 23
   Posted 6/11/2014 3:51 PM (GMT -6)   
*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.

raz/rose
New Member


Date Joined Jun 2014
Total Posts : 5
   Posted 6/13/2014 7:03 AM (GMT -6)   
Being new to here and my tablet, still trying to figure out! Dont want to say anything not permitted here, want to ask, moderator? How does one do that? Thanks.oh btw, dx' 1987.yeah im an oldie,oopps! Shame on me! Hope to talk n get to noya"ll!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 6/13/2014 10:19 AM (GMT -6)   
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.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

raz/rose
New Member


Date Joined Jun 2014
Total Posts : 5
   Posted 6/13/2014 11:35 AM (GMT -6)   
No not exactly.But, thank you , ill look again.Just was wanting to ask you a specifi c question.that might help me.thanks for your help! I know u r a tight group here, and it will take me while to get to know you all. Didnt mean 2 rustle any feathers ! Cya later? Sorry.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 6/13/2014 12:21 PM (GMT -6)   
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!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/13/2014 3:39 PM (GMT -6)   
Welcome, Rose.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
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