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Old 06-06-2003, 09:59 PM   #1
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Join Date: Jun 2003
Location: St. Louis, MO, USA
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Rivera HB User
Question Could it be Lupus?

Hi..I am a 31 Year old female with a multitude of symptoms and no answers. For Years I have had strange episodes of chest pains which have led me to emergency rooms but no tests showed anything. Only once,about 6 years ago I thought I was having a Heart attack. The hospital finally said I had Pericarditus??(not sure if I spelled that right)They weren't sure why I had gotten it because I hadn't been ill but I was treated with prednisone, a week on, a week off for several weeks and it helped. I have also been to the hospital and doctors with strange outbreaks of hives and rashes. From the time I was 4 years old I have had severe joint pain in my knees, ankles, and wrists. So severe I could not walk. My mother took me to several specialists back then who couldn't figure out what was wrong with me. XRays showed nothing.I have dealt with the aches and pains every since then. Usually Tylenol or aspirin relieves it but sometimes not.Having this pain since childhood I think that I have grown acustomed to it,but in December it suddenly got worse..I blamed the cold weather..but it never went away. My knees and ankles ache so bad almost every day. In January I began to get overly tired and pale throughout the day and then I noticed my hair was falling out...all over..not just in one spot...but falling out alot...I began having Bowel trouble...blood in the stool..severe bloating..constipation.Bloating is with or without constipation,dizziness,ringing in my ears, a strange rash on the lower part of my arms underneath that seemed to come on with activity,the rash was big red splotches under the skin,but they come and go??? My lymphnodes in my neck were swollen for 3 months to point where you could see them by looking at me,but that finally went away,off and on shortness of breath. I have had a colonoscopy,abdominal cat scans,pelvic ultrasound,ultrasound of gall bladder,thyroid scan ,upper gi,mri of my head,chest xrays and a gazillion blood tests... My first cat scan came back with small kidney stones, cysts on my ovaries 2 and 3 cm, and a possible mass in the body/tail of the pancreas,my second cat scan(pancreatic protocol) came back okay...I had 3 weeks since December where I felt as if I was getting better. Then all of a sudden I slowly became tired,bloated,dizzy,pale,my hair was falling out again,rashes were starting to appear,my knees were achey again...I went to a rhuematologist who read my blood test results, looked at my fingernails??..made me walk across the room and then said she didn't see any signs of Lupus but gave me pamphlets on Fibromyalgia??? Oh and medicine for my stomache which gave me severe diahreah so she told me to stop taking it.... I'm not sure I am comfortable with the Fibromyalgia diagnosis..I don't hurt to the touch..my bones just ache inside and I have rashes and hair loss. I go back to see her in a week..I have not been myself now for 7 months..I have 2 active children who are tired of me being tired..I am a very active person who enjoys every inch of my life and all of a sudden I feel like it's been taken from me..I just want to feel better..I can't get through the day at work without feeling sick every day..and my hair is falling out which is traumatic to me because you can tell now...Could this be Lupus??? Even with normal blood work..my ANA and rhuemetoid factors were all normal...my mom says I should contact The Lupus Foundation for a good Doctor who is knowledgable with Lupus...she goes to the VA so I can't see her Dr...Could all of this be Fibromyalgia..or could it be Lupus???

 
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Old 06-07-2003, 10:01 AM   #2
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Join Date: Apr 2002
Location: Jersey City, NJ
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zip2play HB User
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My heart is with you,

but the post is SOOOO hard to read....maybe tomorrow!

 
Old 06-07-2003, 01:18 PM   #3
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Join Date: May 2003
Location: Virginia, USA
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BarbaraH HB UserBarbaraH HB UserBarbaraH HB UserBarbaraH HB User
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Hi, Rivera,

I had symptoms similar to yours, but the rash and intense joint pain was over just a 3 week time period. I'd had fatigue and slow hair loss for more than a year. The red rash with raised edges was on my forearms, backs of my hands and my fingers and it did not itch. The 1st doctor I saw put me on Celebrex and all my symptoms intensified dramatically and I missed 3 weeks of work because of the symptoms and doctor appointments. At that time I could not stand up for more than 20 minutes because my legs would start to hurt a lot. The 2nd doctor was a dermatologist who biopsied the rash and his conclusion has not been borne out my life over the last 4 years since then. The 3rd doctor I saw was an internist with the empathy of a rock. He did the ANA which was unimpressive but he announced I had lupus. Normal is the ratio 1:39 or less. Mine was 1:40. At my request, he referred me to a rheumatologist (a most wonderful doctor!). The rheumy noticed my symptoms had worsened after being on Celebrex, took me off Celebrex, put me on Naprosyn, and I slowly improved. He reasoned I might have been allergic to Celebrex (it has a sulfanomide in its make-up, so if you're allergic to Sulfa, you're probably also allergic to Celebrex - I had no known allergies at that time)and said people with lupus just become allergic to things sometimes. 6 weeks later he did another ANA and it was 1:600 - more impressive. I started on Plaquinyl.

I suggest you have your ANA retested and consider if your symptoms have worsened after you were started on a new medicine - you might be allergic to it.

I wish you you well - Barbara
__________________
Betty

 
Old 06-07-2003, 03:01 PM   #4
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Join Date: Apr 2002
Location: Jersey City, NJ
Posts: 2,902
zip2play HB User
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As Barabara implied:
First do your ANA...it can go high from lots of things.

If high, do the several Lupus specific antibody tests:
especially the double stranded DNA test. About 5 good tests in all.
They will confirm or deny SLE!

I was never so happy to see NEGATIVE! (Now I guess I have to call the pain fibromyalgia, or shut up ...probably old age!)

 
Old 06-14-2003, 01:20 PM   #5
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Join Date: Jun 2003
Location: LA, CA, USA
Posts: 14
xtian1 HB User
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Rivera,

Please see my reply below to "PUT A NAME TO MY ILLNESS". I'd suggest retesting the ANA and having your mercury levels checked. Make sure the mercury levels are checked properly, preferably through a naturopathic Dr.

Also, have you had your thyroids levels checked (t3, t4, tsh-must do all) ?? Also ask about a reverse T3 to check for Wilson's Syndrome. Take your temperature every morning to see if it's low. This wuld indicate a thyroid problem. Sometimes it doesn't show up on the test.

I wish you well,

Chris

 
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