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Posted 10/7/2009 6:03 AM (GMT 0)
Ok. I have a long health history including mono for over a year when I was 16. Contracted CMV during this time and doctors gave me injections to build my immunity. It worked. Since then I have "reacted" to every antibiotic prescribed (except Rocephin) by developing a "rash" on my face only, and only after the antibiotic was finished. Doctors called them allergic reactions, but benadryl does not work; only steroids. In my early 20s I decided I needed a tan and went to a tanning bed. After 2 minutes I felt like I was on fire. Got out to look at my body which looked like raw hamburger. Drs called it an allergic reaction. Gave me steroid shot, and it was gone the next day. This happened again another time when I convinced myself it was the cleaner.

A few months later I was diagnosed with tendonitis in both ankles and one wrist, with no apparent cause. I have had "tendonitis" many times since then and have been tested for RA. I don't have it. I have experienced excruciating deep leg pain since I was a child. They told my mother it was growing pains. Am I still growing at 29?

In the past 5 years I have developed depression, extreme fatigue, "pin pricks" covering my chest, proteinuria, hypothyroidism, hypoglycemia, and headaches almost daily. My most recent affliction is hair loss-by the handfuls.

A few days ago I finished taking doxycycline for a bladder infection, and guess what? Well, I got fed up so I started searching. Found several studies on Lupus and antibiotics causing exhacerbation...hmm...

Then I started looking into symptoms of lupus. Went to the doctor today. I have to go to the local hospital for lab draws in the am to see if I have Lupus. Of course I can't sleep. Just wondering what some of your symptoms are and how you were diagnosed??? Wow! I wrote a book!!! Sorry.
Posted 10/7/2009 2:22 PM (GMT 0)

jesimae said...
My mother has an autoimune disorder of some type. They finally gave her a diagnosis of fibromyalgia. Her ANA and other tests were all negative.

Posted 10/8/2009 4:52 PM (GMT 0)
My mom had gotten diagnosed when she was in her early 20's.. They way she found out was she didn't have any health insurance .. my dad had gotten a job in the steel mill and then got health insurance.. my mom went to the doctor and she had re nods phenomenon. the doctor said you can't have re nods without having lupus.
did they test for lupus?.. my mom would be real crampy, even worse when it rained. didn't wanna get out of bed. couldn't be in the cold or sun very long. what are some of the things you are feeling?


Love always, Lori
Posted 10/8/2009 5:36 PM (GMT 0)

Thank you for replying! My symptoms...well I do not have raynauds symptoms. What I do have is joint pain. For the past 3 weeks its been my right wrist. As of yesterday my left ankle and right knee are involved. Last night I ached all over. I'm very weak. I had to tell my husband step-by-step how to make dinner last night because I couldn't get off the couch! He was less than thrilled, but a good sport about it. My daughter has missed her swim team practice because I didn't have the energy to drive her and my husband was working. It breaks my heart. I've always wanted to be a stay at home mom and be involved with the kids' school etc. I finally got the opportunity when my husband took this job; and now all i can do is lay around!

I do get up and make myself do a load or 2 of laundry, clean the kitchen etc, but am really getting behind. I'm enlisting help from the kids a lot more and they haven't complained that much. They're worried.

I have a rash across my nose and cheeks. It doesn't itch or hurt. Just not attractive. I took my first dose of prednisone this morning and can already tell a difference. Now I have the energy to get off the couch, but can't do much when I'm up. My face is either looking better or it's my imagination because I really want it to-hehe.

Mostly I am just extreeemly tired!

I had blood work done yesterday-a lupus panel. I'm trying to figure out which tests are involved in that. I know the ANA is, but "panel" suggests more than one. Looked it up online. Can't find out. Don't wanna bug the doctor either. She already thinks I'm a hypochondriac!

Thanks for your support. How is your mother doing?

Posted 10/8/2009 5:46 PM (GMT 0)
Oh I'm so sorry! I just came across one of your other posts. I'm sorry about your mother. I can't imagine how hard it would be to lose a mother! Mothers are our advocates, our support, our fanclub presidents, on and on...(I'm really close to my mother. Can you tell?) I hope you find comfort. Feel free to honor her memory with stories, etc, at any time, or just hit one of us up to unload. You are in my thoughts.
Posted 10/8/2009 6:14 PM (GMT 0)
Jess.. That sounds like it to me.. like how you described how you feel.. is the way my mom felt. ..My mother passed away in Feb. not because of lupus.. b/c of medical negligence. Are you on any pain killer?.. Steroids were my mom best friend... she LOVED them.. my mom always had more pain on her left side more than her right.. i dunno if it affects one side more or not. My mom always had a routine b/c she couldn't just get up and go .. she would have to take her meds in bed.. drink her coffee and let them kick in then "pace" her self.... and about your kids.. weather it be lupus or not.. my mom always told me how it killed her to have to sit and watch out window .. when my dad, sister and I would play in the snow. My mom made me so strong b/c of how strong she was in fighting it and not trying to show it. Your kids will understand that too someday .. god deal you a hand of cards.. it's all in how you play them..

love always, Lori
Posted 10/8/2009 6:50 PM (GMT 0)
Jess... it's o.k .. She was my best friend.. my everything.. we were sooo close.. and really.. sometimes.. I don't know how to deal.. But I'm alot like her.. I'm a very strong person...That's why I came here.. so I can help people with lupus or other diseases b/c my mom had a lot of problems. been there ya kno?
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