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    Old 05-31-2005, 10:06 PM   #1
    jenn81
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    Unhappy newbie w/ sjogrens possible lupus scared

    hi, i am 24 yrs old and was just recentley diagnoised with sjogrens syndrome my rhemy suspects that i also have lupus since i have a positive ana of 1:640 however as of right now im not meeting all the criteria symptoms so he says time will tell. im just really scared. sorry if this gets long but no one around me really understands how i feel. when i was 12 my mother started to get sick all the time, usually after she would lay in the sun. she always had fevers and shortness of breath and problems walking and swallowing you name it she had it. she would go to the dr. and they would send her home with antibiotics saying she had the flu or pnemonia. so naturally we started to belive it was all in her head since the drs always said that her tests were normal and nothing was wrong. anyways 2 yrs later she went to the emergency room with shortness of breath, they couldnt figure out what was going on so they decided to do a lung biopsy. she was so scared she kept saying "im not gonna make it through this" we all told her to relax that she would be fine, that this was the only way to find out why she was having such problems breathing. well she didnt make it through the procedure she coded and they couldnt bring her back. she was 48 yrs old. we immediatly requsted an autopsy, it just didnt make any sense the dr called this"a routine procedure" so why did she die??? well it turns out that here lungs had honeycomed as a result of sclerederma. so after all those years and all thoses drs telling her it was all in her head it turned out to really be something serious. it pisses me off to this day that my mom had to endure all that humiliation and suffer in silence as a result of no one beliveing her. here i am 10 years later facing the same issue. i gave birth to a beautiful, healthy baby boy 8 months ago 4 weeks postpartum i started to get sick, pains in my whole body so bad that i could barley stand holding my baby. it felt like someone was stabbing my muscles and hammering my bones in addition i had tingiling troughout my body and it hurt to touch my skin, also i had chest pains and a feeling like my organs were shivering (if that makes any sense) i went to the dr. and explained what i was experiencing and he decided to run a bunch of tests including checking my ana since my mom had sclerederma. well it came back positve 1:80 speclked he sent me to a rhemy who ran more tests that all came back normal. he said that my ana was more then likley positive from the pregnacy and my symptoms where a result of strain on my body and lack of sleep. he reasured me that i was fine and he told me to come back in 6 months to be rechecked if i didnt get any better. well i didnt get any better so 6 months later i went back, i explained that i was now having problems with my eyes feeling like there was sand in them also i had recently went to the dentist to find out that i had cavities on 16 of my teeth. he reorderd the tests and called me a week later to tell me that i had tested positive for sjogrens and that my ana was now a 1:640 homogenous and that i needed to see him. i was moving out of state at the time so as soon as i got settled i found a dr. through the lupus foundation. i went to see him last month he gave me plaquil as well as a medicine for my saliva. i have yet to take them because im so scared of the side effects and in some sick way i feel that maybe it will just go away. i dont know what to do i feel bad since im always complaining to my husband of how shity i feel yet i refuse to take the medication. i really want to try a more natural approuch, ive been taking lots of vitamins, minarals, fish oil ect. and eating very healthy but im still feeling so sick what i notice is that i get the worst pains and fatigue and fever when i get my period. has anyone noticed the same thing?? i feel like my problems are hormone related. right now im a little worried since im 2 weeks late for my period yet im getting the cramps and pains, i know im not pregnant so i cant understand what is causing this. anyways im sorry to be rambeling but honestly i feel like i have no one to talk to. every night i lay in my bed and pray to god to make this just go away or not make me any sicker i have a baby to take care of and im so afraid that im gonna die and leave him, it makes me sick just thinking about it. if anyone out there has any suggestions i would really appreciate it, also if anyone has decided to try a natural approuch i would like to hear about it and wheather or not its working.. once again sorry this is so long. thanks for listening

     
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    Old 06-02-2005, 06:41 PM   #2
    Johnster
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    Re: newbie w/ sjogrens possible lupus scared

    jenn81,

    I am so sorry to here about your mom. I have been there very recently as my mom died fairly young from what docs and specialists finally started arguing about a series of at least 4 or 5 auto-immunes diseases. There was also debate on weather her lungs being shot so suddenly were caused by all those diseases or smoking, maybe both. I know she developed sjogrens later and if Iím not mistaken it is usually accompanying another auto-immunes disease and not ever by itself, but I could be wrong. Anyway, from the time she was in her 30s she went thru the same as your mom. The whole hypochondriac accusation thing and all. I once went to the Hospital and watched all the doctors and cardiologists turn white as ghosts because wile they were releasing her she had a stroke. As I turned 30 some of my conditions started mimicking hers. She would apologize and say sorry for giving this to you whatever it is but I didnít ask for it either. I too for years was trying to be convinced that all my problems were in my head. Later at 61 last year my mom passed. At the same time it was finally discovered that my shrinking 4 Ĺ inches in 2 years from my back crumbling and severe Osteoporosis was not in my head even though so many blood tests said I was GREAT!!!! After so many tests they run out of things it could be except 1 extremely rare disease. They say my odds are better for winning the lottery than having this and most docs or Rheumatologists never even heard of it. They said if I did test positive they didn't even know anything about it. Well I had it. I found out through all my research that it may not be as rare as they believe and that so many may be going thru life being mis diagnosed and treated for auto immunes diseases instead. The disease I have is called Systemic Mastocytosis. Apparently there is no real research being done because not enough money to be spent by us rare cases. They know there is a genetic marker or flaws with all us people but there still isnít enough proof it runs in families. My mom didnít have a biopsy but I wish she did for my nieces and nephews sake. I wish someone would spend some money on research. From what I read of this disease it may contain a cure or better treatment of all Auto-immunes diseases as well as allergies and possibly even AIDS. That's my belief anyway.

    I donít know what I am telling you all this for. Jenn81, I just hope everything is working out O.K. for you. Keep me posted of your condition. You can also find me in the Rare disorders section under my post with 0 replies LOL!!!

    Best wishes and Prayers
    Sincerely John

    Last edited by Johnster; 06-02-2005 at 06:43 PM.

     
    Old 06-03-2005, 11:55 AM   #3
    charleyhorse
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    Re: newbie w/ sjogrens possible lupus scared

    Hi Jenn and John ... my heart really goes out to both of you. That is a lot of pain and suffering to bear. Jenn, I just want to encourage you to take the medication. I have some rare medical problems too and sometimes it is overwhelming, but you can't even begin to deal with the stress of all this when you are physically so sick. I'm all for taking the natural approach as much as possible, but I have found that sometimes I need the heavy weapons. When you are feeling better then maybe a visit to a naturopath might give you some tips on staying healthier.
    I hope you are both get some good treatment soon
    Barb

     
    Old 06-04-2005, 05:32 AM   #4
    RozIA
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    Re: newbie w/ sjogrens possible lupus scared

    Is this similar to Burning mouth Syndrome?

     
    Old 06-08-2005, 09:33 PM   #5
    JimBBB
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    Re: newbie w/ sjogrens possible lupus scared

    First, very sorry to hear about all of your troubles and symptoms. I cannot imagine trying to get on with life when all around your body and mind are going to hell. One post you should take a look at is the first sticky over on the "Open to All Health Related Topics" board by Warm1 where he talks about the Marshall Protocol. It was specifically designed to fight Th1 diseases like yours (and yes all of your symptoms are probably caused by the disease -- it is not 'just in your head'). After you look over that post please come on back and tell us what you think. Be aware it is not a get better quick protocol nor is it painless (in fact you'll feel a lot worse before you ever feel better). Hoping you get some cause for hope there.

    Last edited by moderator2; 06-08-2005 at 09:46 PM.

     
    Old 07-08-2005, 10:20 PM   #6
    Deda
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    Re: newbie w/ sjogrens possible lupus scared

    Hi there Jenn.... I'm so sorry for all that you are going through right now. Especially since you just gave birth to a new baby, which should be such a happy time in your life. Life is so unfair sometimes, huh? Especially with these autoimmune diseases running through our blood. Your story of your mom brought me to tears. My precious mother too died at 56 due to Idiopathic Pulmonary Fibrosis, at 56, same lung problem your dear mother had. She too was labeled a hypochondriac, by all of us. And little did we know at the time that these diseases have familial traits. I now have Hashimoto's, and hypothyroid, and it sure has turned my life around, I've had a tough time with it, but if that's all I end up getting, I will be so grateful. Please sweetie, try out the meds. There's a lady on the thyroid boards with hypo/hashi's and Lupus, and she wrote that she is feeling wonderful since she started Plaquenil, I swear. You might just well have the same good results. You want to get it treated so the disease doesn't do more damage to your body. Please just do it, and pray hard...God will see you through it...he will. If it turns out to make you too sick with side effects, well then they can just try something else. I'll be praying for you, I promise. You've got that little one to look after, and you need to try everything to get yourself well again. I think you'll be okay! I don't know why I say this, but I just feel it.
    And John, I know you from the smoking board...you're such a helper to all, and so compassionate. Your story of your mother made me sad too. My older brother passed away 5 years ago next month. Like your mom, he had at least 4 autoimmune diseases, inlcluding the pulmonary fibrosis, and a very rare one called Wegener's Granulomatosis, pernicious anemia, and Hashimoto's too. AND he had other problems too...hemochromatosis, esophogeal varices, liver problems, autoimmune hepatitis. What the hell happened!? He was always SO healthy and strong before all of this hit. (My mother had hypo/Hashi's as well). He really suffered, but I know he's well now. Then last year my 76 year old uncle dies of pulmonary fibrosis! Oh my gosh!... You KNOW I worry about it constantly!! I pray constantly! Oh, my brother was only 46, and get this, (it's unbelievable!) he ran his own business, was raising his 14 year old son as a single parent, and worked right up to 2 weeks before he passed! He didn't find out about the PF or Wegener's until the very last. I think he was too scared to tell the Dr's how ill he really felt. He managed getting by through a lot of mental strength (mind over matter) and faith in God.
    John, and Jenn, I will be praying for both of you, I promise. Please pray for me too, would ya? They MUST do more research and find cures for these horrible autoimmune diseases...or at least some treatments that work much better than what they have now! I don't care how rare some of these AI diseases are!! If they find something that helps to normalize the immune system, they could help all of us! I'm sorry for all you've both been through, and God bless you both!
    Love, Deda

     
    Old 07-25-2005, 07:50 PM   #7
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    Re: newbie w/ sjogrens possible lupus scared

    Deda,

    I just seen your kind words, prayers and support here just recently. I am so sorry for not responding sooner. You have become a good friend and an inspiration for me as well. You are and will continue to be on my prayer list as well as jenn.

    God Bless

    Sincerely
    John

     
    Old 07-30-2005, 09:26 AM   #8
    Deda
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    Re: newbie w/ sjogrens possible lupus scared

    Thank you. Hope you are doing well these days. Haven't seen you around the SC board much lately.
    Have a great weekend.
    Deda

    Last edited by Administrator; 10-22-2005 at 03:00 AM.

     
    Old 07-30-2005, 07:49 PM   #9
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    Re: newbie w/ sjogrens possible lupus scared

    FHey Jenn88,
    I am 44 yrs old, diagnosed with sjogren's syndrome 21/2 yrs ago. Like you when I first started reading about plaquenil and all those horrible drugs it scared me to death. I, like you said that wasn't for me. I will find a more natural way. Now after a couple of years of that crap I got down to business and started taking plaquenil. Wished I would have done that 2 1/2 years ago. The best advise I can give you is take good care of yourself, eat healthy, exercise even if you can only walk 3 or 4 blocks, work up to more. Make that be a very important gift to yourself. It is very hard to exercise when you feel so bad but it does make it better I promise. Rest when the baby does, make big meals for left overs, and start taking your meds. Start slow so the side effects are not so bad. And watch out for all those cures because you will hear so many. I heard this cured my grandmother of RA, that herb cured my mother of lupus. Trust me if those things really worked you would be reading about them on this board. Or I would be telling you how well that worked because I tried them all. haha

    I also watched my mother have the same problems that I am having now. Dr after Dr. told her she was bipolar. Well 25 yrs later me, my twin siter and my middler sister are all having some sort of arthrits problems.

    I read about all the people who are scared of plaquenil and mtx now and they seem like nothing drugs to me anymore. All drugs have side effects and all are different for each person. All I know is for me the longer I waited the longer if felt worse and the more damage that was done that couldn't be fixed. I am not by any means saying that plaquenil will fix all of your problems but it sure made me feel better.

     
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