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Thread: Gathering info..when did it really begin?

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    Wink Gathering info..when did it really begin?

    I am doing some fact finding...can all of you think way back to childhood and remember any symptoms that did not seem like symptoms at all at the time??
    growing pains, tendonitis,sore muscles, mono,chicken pox, rheumatic fever,skin issues,allergies..Is it possible you started with overlooked issues long ago? Any input is greatly appreciated. I am very curious and I would love to really do some research that could somehow be put to good use. My sister has an in at NIH...who knows..maybe we could get something going. She helped push for a study for my nieces rare disorder..persistance paid off..they are seeing kids from all over the world at NIH with her syndrome, participants are screened for free.Thanks to all for any info.
    Andrea

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    Well, I had hepatitis at age 5, in 1961, rheumatoid arthritis at age 10, hemolytic anemia,( hemoglobin was 2.6) at age 24, during my second pregnancy. I had alot of joint pain throughout my life.
    My first rheumy thought, I might have had lupus most of my life, I was dx three years ago.

    Debbie

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    Andrea,
    I've thought about this one a lot. I think that I did have some early signs, but I had lousy medical care, since we were on welfare, and my mother was the abusive type.
    1. I had those miserable "growing pains" that you spoke of.
    2. I had what they called "walking pneumonia" at the time. It happened every year at the same time of year, so now I suspect seasonal allergies, maybe even mild asthma.
    3. I could never run or keep up in P.E. My legs would always cramp up or just give out on me. The coaches always chewed me out and gave me failing grades.
    4. Balance problems right from the beginning. I never could learn to roller or ice skate - no sense of balance. I couldn't ride a ten-speed, either - I had to use a one speed bike with wide tires, and I still fell often. (Now I have Meniere's disease - was this a clue?)
    5. This one really gets me - The rheumy recently told me that I tested positive for psoriasis, so some of my joint pain could be psoriatic arthritis. She found a couple of scaly patches in my scalp, and declared them psoriasis.
    I first noticed those in my scalp when I was a young teen. I showed my mother and asked her if I should use some medicated shampoo I had seen advertised, and she erupted, calling me "a dirty, sloppy girl". She accused me of not washing my hair "right". She dragged me to the sink by my hair and washed it for me, digging her nails into my scalp and telling me that I needed to keep cleaning my hair that way. This was the way that she usually dealt with me, so needless to say, I never mentioned the sores again, even though they got worse and often extended behind my ears and down my neck.
    After Jeff and I married, I started using his Denorex whenever I noticed the sores, so I've kept them under control and never gave them a second thought until my rheumy went looking for them.
    It's kind of a relief to know that there really was a medical reason for those darned things.
    6. I came back and added this one. I've been diagnosed with Sjogren's and I think that there were signs of it when I was a kid. I always had dry, gritty eyes - as long as I can remember. Also, I could never cry. No matter how upset or sad I was, I simply couldn't produce tears - still can't to this day. This was something else that angered my mother. She thought that I was some kind of hard-hearted demon-child because I didn't cry at funerals. Sometimes I think that she would scream, swear and hit me just to try to get me to cry. I would have dry, heaving sobs, but never tears. Could this have been Sjogren's all along?

    I hope that this info helps to get you started.
    Here's another thing that I know we've talked about on here before - many of us have noticed AI issues throughout our families. For example, I'm sure that my mother and my aunt had them - just not diagnosed as such. They had rashes, RA, hoarse voices, and late in life, Alzheimer's. The familial connections are something that I would really like to see studied.
    Good luck with this one!
    Marla
    Last edited by magistramarla; 11-28-2009 at 09:18 PM.

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    Wow, that's wonderful what your sister got accomplished Andrea!

    I've been wondering how far this goes back too...ever since Bonita brought up the post about endometriosis.

    I had a lot of cases of tonsillitis and ear aches as a 9 year old that ending in me having tonsils, adenoids removed, and ear tubes put in. Seems like that should have happened when I started school instead of fourth grade. Most kids catch everything and are sick the most when they start school, but I was pretty healthy those first two years or so.

    I have always had to battle rashes. Sometimes it was just poison oak, but other times I had gone no where near it. One time they sent me home from school with supposed german measles but the rash was gone the next day.

    I had a lot of aches and pains which were chalked up to growing pains, but I didn't grow very tall or fast either. I'm the runt of the family.

    I've had bowel troubles as far back as I can remember. I had remission from it off and on in life, but it's gotten worse with age. I've heard recollections of when I was a baby with bowel trouble.

    I've had female issues ever since I "officially" became a woman at age 15. Had no clue it was endo/adeno until I was an adult.

    I had a lot of headaches as a teen, a lot of tummy trouble, and a bad case of bronchitis for two months. I had kidney stones at 17, but I think it was more than kidney stones...it was a lot more painful than the stones I've had since then.

    I've had walking pneumonia too...ugh, that was a gruesome experience. ((((hugs)))) Marla. I used to get scaly patches on my scalp too. I haven't had that in years. I get sores now from sun exposure and that's about it. I've been accused of crying crocodile tears...just because I couldn't sob out of my eyes even though everything else showed I was crying. Oh Marla...what you went through sweetie... I'm so sorry you had a crappy mom.

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    Ladies..thank you sooo much for the input..I think we had these oddities from a young age. Abba...I had my tonsils out at age 21!!! Marla...you seem to be a great lady..in spite of what you endured!! My mom died in June and she was a great person..when I hear stories like yours..I realize how fortunate I was. She devoted her life to caring for others...was a nurse by trade and stopped to be a mom of 5..along with the "on call" nurse of the neighborhood when we were kids. Went to work when I was in junior high and then took care of her parents one by one with age and illness. I feel so blessed to have had her and she truly was a saint who never had a bad word to say about anyone...I wish we could have cloned her. I try to have her strength when feeling physically/mentally drained. She never complained I feel like such a whiner sometimes..those are some tuff shoes to fill.
    Andrea

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    Andrea,
    Your mom sounds like she was much like my mother-in-law. She raised her four boys, then went back to school herself and became a nurse. She was the head nurse of a coronary critical care unit before she retired. She was a great lady, and I learned a lot from her. She was the "Mom" that I didn't have growing up. When my mother passed away, it was just a duty for me to go take care of her estate. When Jeff's mother passed, it was a trauma for all of us in the family.
    I guess that I was very lucky to choose the right guy with the right family for me!
    Marla

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    Hi Marla!
    I just wanted to write and say you are not alone in the mom thingee... My mom abandoned my brother and I when I was 4 and he was 1, my dad then married the "evil" stepmom.... sounds like your mom. I was blessed beyond measure with a wonderful mom in law, who is more a mom to me then either of the other ones!!
    It was such a relief to find that there were moms out there who really did try and put their kids first, and love no matter what...

    Bless you,
    Deb
    God Bless,
    Deb
    "You do not have a soul. You are a soul. You have a body." C.S. Lewis


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    Quote Originally Posted by pandagirl View Post
    Abba...I had my tonsils out at age 21!!!
    Bless your heart...I hear the older you are with tonsil trouble, the worse the pain is. I'm thinking it wasn't typical tonsillitis but autoimmunity. One doc told me we can't blame everything on AI, but I bet we can blame it for a lot.

    I'm so sorry about your Mom.

    Deb...((((Hugs))))

    I'm motherless. I was forced to tell my mom goodbye recently. It's more painful having her in my life than out of it. My mother in law and I used to be close, at the beginning of the marriage, and then I got to know her better, and why my husband hates visiting her...and when I stopped making him visit her, she turned ugly on me.

    I had a very wonderful stepdad though. Nurturing, caring, and spent a lot of time with me. He passed away over 6 yrs ago. He made a big difference in my life and I miss him very much.

    God fills in the holes.

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    Abba..yes it was horribly painful surg for that age....but I had no more infections after that so it was worth it. Thanks for the condolences..i miss her. she was truly a gift and when I hear the other "mom" stories..my heart breaks. I am a mom ..I can't even fathom being treated like that or doing that to my children. It amazes me how some people are able to reproduce and are horrible people..and you see these wonderful childless people who would give their left arm to have the gift of a child. Life is a mystery. I am having a lot of pain this week and I just try to draw strength from how my mom was...I think of how she was small..but mighty and NEVER complained..about anything..if she was ever in pain..you never knew it. That is a tough act to follow!. I hope more people respond and let me know of the early symptoms!!I do believe I started in childhood as well.
    Andrea

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    Is it still ok to put my little input in?

    I had my first flare from 7/8 i had a mouth full of ulcers, then i remember being sick every summer (fluey), hitting my teens i had terrible "growing pains" in my legs soo severre i would cry every night, i always had probs with my tonsils being inflammed etc, but never had them out, then when i was 17 i had my first DVT, and a number of years went by til i was 27 had my second DVT and 6 months after that i got diagnosed with lupus.

    Thanx for letting me input

    ISDM
    xxx
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