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    Old 02-21-2005, 02:42 PM   #1
    mtm9138
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    Exclamation could it be lupus?

    Hi! I'm still fairly new at all this, so i'll try to make this as brief as possible for ya'll. My doctor ('s) are in the process of testing me for lupus, i have had 2 positive ana's 2 positve rheumatoid factors, I just had the anti DNA and the anti smith tests and the both came back negative. I have pain and swelling in all my joints especially my fingers/ankles, i'm anemic, i get a red"rash" on my arms/face when exposed to the sun, not a sunburn but more like a rash. I sometimes have a red "rash" on my face that looks similar to the butterfly rash so commonly associated with lupus. My hair is falling out all over the place, more than typical winter "shedding". I also was recently diagnosised with Neurocardiogenic syncope(vasovagal syncope). I had to have cardiac ablation in june because i kept going into SVT. Also i have a low thyroid. I take ortho try-cyclen lo for bc. and i'm currently on 50 mg lopressor daily for the syncope. Does anyone know if it could still be lupus even though i had the anti-dna and the anti smith come back negative. {removed} I'm sorry this is so long, any info would be greatly appreciated. thanks


    barbie age 23

    Last edited by moderator2; 02-21-2005 at 03:08 PM. Reason: please carefully review the posting rules - no emails

     
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    Old 02-21-2005, 02:44 PM   #2
    mtm9138
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    Re: could it be lupus?

    sorry i also forgot to mention that i also have rheaynods (spelling) and different points in time it seems like my lower jaw gets tingling, sorta feels like i've had dental work done (the numbness you can get when the numbing starts or when it goes away)

    sorry


    barbie

     
    Old 02-21-2005, 03:38 PM   #3
    VeeJ
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    Re: could it be lupus?

    Dear mtm9138,

    There are several terrific hardcovers on lupus, available in your local bookstores & libraries. Two that you might want to browse, because they have a tremendous amount of info, are by (1) Dr. Robert Lahita, and (2) Dr. Daniel Wallace.

    Anyway, what I've read in these books is that there are something like 15 or more findings in bloodwork that *might* signal either lupus or a lupus-like illness, with anti-ds-DNA and anti-Sm being the two autoantibodies that are considered pretty "sure-fire"... Point is, there are many other autoantibodies possible. When those two sure-fire ones are absent, it can really prolong the process.

    Also, antibodies wax and wane; so if other symptoms associated with lupus are present, in my book they SHOULD keep testing you and watching you like hawks.

    Also there are "hybrid" autoimmune conditions, such things as MCTD (mixed connective tissue disease), "rhupus" (a mix of RA and lupus); etc. These can be a real bear, as getting any kind of Dx can be problematical.

    Unfortunately, no one but your drs. can answer your question for you. And if *they* don't pan out, you could certainly try others, if you feel progress is not being made, or if you lose faith in them.

    Meanwhile, you could start getting copies of all your lab results, just in case you ever make a change---or just to build your own file to ask good questions. One thing you could perhaps check for is for screening for antibodies *OTHER THAN* DNA and Sm. Presumably they are looking in a broad range: you'd want to know they are checking for anti-Ro, anti-La, etc. (meaning all those others seen in autoimmunes in addition to DNA & Sm).

    Are they for sure going to do more tests? Have they set up follow-up appointments or given you guidelines as to when to check in again?

    I hope others chip in with more thoughts! Meanwhile, I have my fingers crossed that you are getting closer to the root cause(s) of what's going on. I hope you keep posting & getting good ideas---and good thoughts coming your way from all of us. With my very best wishes to you! Sincerely, Vee

     
    Old 02-22-2005, 06:19 AM   #4
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    Re: could it be lupus?

    Dear mtm9138,

    I forgot one thing about Dx'ing lupus that startled me no end! Here it is---

    There are "subsets" of lupus to which the "4 of 11" diagnostic criteria do NOT apply. To see the "4 of 11" criteria, open the "sticky post" at the beginning of this board. At least 4 of these conditions must be met AT SOME TIME (meaning not all at once) for *systemic* lupus = "SLE" to be Dx'ed.

    BUT there are some well-known "subsets" of the disease, for which *less than* four criteria need be met. The mildest is "discoid lupus" (DLE), where the prime symptom is discoid (scarring, depigmenting) skin lesions. Arthritis and fatigue may also be present. ANA is positive only about 50% of the time.

    A second "subset" is subacute cutaneous LE, which is deemed "intermediate" in potential. Symptoms may range, though, across the whole SLE spectrum, but kidney and CNS problems are statistically less likely. ANA and anti-Ro are positive only about 70% of the time. Characteristic rashes are of two types: nonscarring & nondepigmenting rashes that are (1) circular, or (2) papulasquamous (resembe psoriasis). 50% of cases remain fairly mild.

    Also, there's drug-induced lupus (DILE) and neonatal lupus.

    Anyway, the main point here is that there are forms of lupus other than systemic and in which anti-ds-DNA and anti-Sm do NOT occur. For myself, I had quite a variety of problems and finally was diagnosed with SCLE and cutaneous vasculitis. My problems included anemia, hair loss, joint pain & swelling, fatigue, weight loss, elevated sed rate, urinary & GI problems, migraines, frequent infections, nerve tingling, mild Raynaud's, and the SCLE annular form of rash. (My thyroid is normal.)

    Rashes sometimes cross "subsets", also. e.g., sometimes people with SCLE can get either a malar rash or a discoid lesion. I had one "discoid" in addition to the gazillion or so red rings on my arms and back.

    Hope this helps a little. from Vee, with my best wishes

     
    Old 03-08-2005, 08:43 AM   #5
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    Re: could it be lupus?

    Hello everyone. i am new here too and was wondering if anyone could help. i suspect i have lupus. It started from what i can gather a few months ago. i was prescribed contraceptive pill to clear up a few spots. the pill gave me red allergic type spots.these went away when i stopped taken it and doc gave me a topical solution called dalacin c and oral antibiotics instead. after a week or so i started getting a pain around my left eye. took myself off oral antibiotics. a week after this i put the dalacin c on one night. and woke to find my skin bright red and the texture of sand paper. Went to the doctor and they gave me anti allergy tablets. My skin was red and peeling off for a week. had a high temperature and headaches. but then was ok just weak and tired but skin normal. A week later it started happening again. The first sign i noticed it was a kind of tingling around my eyes and it went all craggy there. then in the next few days my head and face was swelling up. above and below the eyes. my cheeks and my chin and jaw. had terrible headaches like somone was punching my head from the inside. and when i closed my eyes i could see coloured dots. I went to see a dermotologist privately who said that i was very sick and immediately referred me to the emergancy department of a hospital. That night before i was due go to the hospital i started having pains in my stomachand my upper thighs was boiling hot with very sweaty palms. I got up to go to the toilet and thought i would pass out or be sick. it was very hard to walk cause of the pains. i lay on the landing floor shivering and shaking and with shortness of breath. my dad covered me in a blanket but could not move me. i could not move any part of my body with out being in extreme pain. in the morning when he took me to hospital i don't know how i got down the stairs.
    Two consultants looked at me in the emergancy departments and did some tests. by now the pain was less and i could move. i was sent home as an outpatient told i was being referred to a rheumie and to have some scans. sincing coming home i was bad for about a week and could not sleep at all. on a couple of nights i have had breathing problems. but just laid in bed telling myself it would pass. it did thank God. after a few days i was able to walk without extreme pain in my calfs and upper legs. but i started to get very painful hands. it hurts to write at this time and developed darkish swelling under my knuckles nails and even on my knees. my hands and feet are almost always freezing cold even in a warm room and they get swollen. i have rashes that vary around my body sometimes arms sometimes chest and face. i also have times where i feel extreme fear and confusion. i am extremely weak all the time and have not been to work for two months since this happened. my hair is brittle and thinning. My face has got lots of different spots now. and my skin peels off everyday. leaving greasy baby soft skin underneath. my face goes from swelling to being deadly hollow. it has gone flat looking between my eyebrows and my chin seems swollen. my eyes look sunken and my right eye seems to be more so. i still have blurry sort of vision. Its not as easy to read now. my body has changed physically to certain bones seem swollen and sticking out more than others and i am loosing weight fast despite eating as much as i can. i have decided not to look in the mirror anymore people used to tell me i was beautiful.
    I feel desperate for help it apparantly will be a few months before i see a rheumie but no one told me anything. i think i have had an ana done at hospital but it was clear?

    I am seeing a rheumie privately on friday. but everyday feels so long. i feel in shock and stuck in a nightmare.

    two months agao i was going to the gym, work, out with my friends had a boyfriend and was looking and feeling amazing. i am 28 years old.

    during the last few weeks i have felt i have needed to go to the emergancy department a few times but stopped myself from doing so. the dramatic changes in my health physical wellbeing and appearance don't seem to be enough for them to take action. things seem to be pointing at lupus?? and possible drug induced lupus? i am sorry this is so long but i really have had no one to help or talk to although the hospital did acknowledge that i was definatley sick.

    Zoe x

     
    Old 03-08-2005, 02:39 PM   #6
    journeygirl
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    Re: could it be lupus?

    ZoŽ,
    I'm so sorry you've been so sick. I can't really answer any of your questions but I do think it's important for you to go into the ER whenever you think you should. If nothing else it's a way to document things that might be gone by the time you see the doctor. From my experience you need documented symptoms for a doc to really know things were appearing.

    I hope you begin feeling better soon and you get a Rheumy appt soon.

     
    Old 03-08-2005, 02:59 PM   #7
    zorm
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    Re: could it be lupus?

    Dear journeygirl,

    thank you so much for your reply. It gives me some hope and courage and hopefully a goodnight sleep tonight.

    bless you your great! XX

     
    Old 02-26-2008, 09:44 AM   #8
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    Re: could it be lupus?

    I realize you have a lot of other conditions that may be a factor... but one thing to check on is your exposure to Fifth Disease. It's a childhood illness but if you never got it as a child you can still get it as an adult... symptoms for adults include joint aches and major swelling, and in some cases a lacey rash that is worsened by the sun. Also, once you have gotten this disease, the symptoms can flare up for months. (I got it recently from my 5 year old)

     
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