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Thread: Need advice

  1. #1
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    Default Need advice

    Hi , my name is Lily and am very new to this. Well first of all let me tell you about myself. I am 45 yrs. old and have been married for 26 years with 5 children and 3 grandchildren. Everyone started to come down with the flu this week and I had got feeling pretty crummy and went in to see my Dr. He had said that I had walking pneumonia and started me on some meds. Within an hour of getting home I started feeling close to a paralysis state and was having some severe muscle joint pain in only my lower half body. I also had pain only in a centralized spot on my back. I had thought it might be a reaction to my meds so I called the Dr. and he advised me that is was not that and to take the pain reliever he prescribed. This pain lasted severley for three days, but strangely would be so severe for hours especially while laying or sitting down, then would subside for awhile then come back worse. I went in to do blood work and gotten results that " I hope I say this right" my westergrain results were highly elevated. So they made me do the "ana" test and I got the results today and was told it was positive, and had inflammation. So what this all meant to me was weird. The Dr on call seem to focus more on how great my cholesteral was. H then told me results were positive...for " ana" lupus test, but "don't worry" your cholesteral is awesome! Well aint that awesome I told him but tell me about the word Lupus you mentioned. So anyhow he tells me " well do you have rheumatoid arthritis? I told him no, so he replies with well the results are positive but if you don't have a rash I wouldn't worry because the test for it doesn't mean you have it, but if you have concerns try talking to your Dr. about it....well to say that much what am I to think? I don't know what to do, if I leave this alone what will happen and how do I find out if I have it. If anyone can give me any advice on this I will truly appreciate it.....hope to hear from you.....Thank you.

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    hey I don't really have any advice but just wanted to say welcome and chin up....
    The worse the bad times are the more we appreciate the good things in life..

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    Hi and welcome to the site. Just hang in there someone will be here soon to help you. Sending you gentle hugs.

    love
    Angel.xx

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    hi lilian,

    welcome to the forum....this is a great place for answers to your many questions. this discovery process is extremely frustrating and can sometimes last for years. I tested positive for lupus for over 10 years, but did not display enough of the symptoms. Lupus diagnosis requires positive ana, plus at least 4 of the 11 symptoms. When addressing each of the symptoms, be sure and think back.....no all symptoms come and stay. You may have had some in your past, but maybe not present today. It appears to be normal for lupus to include high cholesterol....mine really isn't badly elevated. Also, some drs. seem to focus on just a minimum symptoms....for example if you don't have the malar rash, then they don't think you have lupus.

    there are so many people here who can really give you guidance with specific information on blood work, symptoms, etc. Please feel free to stay with us, and ask as many questions as you need to.
    Phyllis

    share a smile today

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    HI Lily! Welcome....I am sorry you have not been feeling well.
    From what I understand, you have had flu-like symptoms, a high sed rate (westgrain), and a postive ANA. Of course, you should continue to seek the advice of your physicians. A lupus diagnosis is rarely simple or rapid, and should never be based on lab tests alone. The following is based on my experience as a lupus patient, and as a nurse practitioner.
    These things alone do not mean you have lupus. There are many other possibilities. The American College of Rheumatology lists 11 specific criteria, of which 4 are needed to secure diagnosis. However, as was mentioned in an earlier post, many physicians interpret these criteria differently. It is possible to have presumptive or probable SLE, without fulfilling 4 criteria. Regardless of how it is classified, patients are often ill or feel ill for quite some time before a diagnosis is obtained.
    Are you scheduled for a follow-up visit with your physician? If not, might I suggest an appointment to further discuss a plan that makes you both comfortable.
    I wish you the best! Please come back and update us.

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    Hey Lily,

    Welcome...sorry to hear that you have been feeling so crummy...I just got over pneumonia...yech...
    Ok..your doc is right when he says a high Ana does not diagnose you with lupus..but there are many with lupus who do not have rashes. That is one of the criterion but not all. My suggestion is you do as I did when all I had were my symptoms and a high speckled ANA...I made an appointment with a Rheumotologist..I went to two actually. The first was a jerk.
    One test that would be nice for you to have whether you go to an actual Rheumotologist or not is a ds DNA test. My rheumy calls that his lupus marker.
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hello and Welcome Lily;
    You've already been given some very sound advice by our members here. A positive ANA alone does not indicate Lupus. However, 95% of Lupus patients do have a positive ANA. Also, as was mentioned, not everyone gets or has the Lupus rash, so not having a rash does not preclude Lupus. Also, as was mentioned earlier, there are eleven criteria set forth by the ACR. In order to have a diagnosis of Lupus, you must meet four of the eleven, not all of the eleven. The criteria can be found on these forums in "Newly Diagnosed" and it is a sticky. Making a diagnosis of lupus can be difficult. It may take months or even years for doctors to piece together the symptoms to diagnose Lupus accurately
    Many Lupus patients are mistakenly diagnosed with Rheumatoid Arthritis because the inflammation and some of the symptoms are so similar. RA and Lupus are both auto-immune disorders and it is also common to find Lupus patients who also have RA as an over-lapping disease.
    I am going to give you a bit of information about the tests that you mentioned:
    ANA: The ANA test is a screening test used for several autoimmune diseases. It determines whether auto-anitbodies to cell nuclei are present in your bloodstream. The ANA is currently one of the most sensitive diagnostic tests available for confirming the diagnosis of Lupus, but only when the test is accompanied byother typical clinical findings. Without those findings, however, a positive ANA may mean nothing at all. The ANA test simply provides another clue for the doctor to consider in making a diagnosis. In addition, there are blood tests for individual types of autoantibodies that are more specific to people with lupus, although not all people with lupus test positive for these and not all people with these antibodies have lupus. These antibodies include anti-DNA, anti-Sm, anti-RNP, anti-Ro (SSA), and anti-La (SSB). The doctor may use these antibody tests to help make a diagnosis of lupus.

    ESR (erythrocyte sedimentation rate): Other tests that would possibly be used in conjunction with the ANA test and in the presence of inflammation include erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) tests. The SED rate is a marker to show inflammation in the body. An erythrocyte sedimentation rate test, also called an ESR or sed rate test, measures the speed at which red blood cells fall to the bottom of an upright glass test tube. This measurement is important because when abnormal proteins are present in the blood, typically due to inflammation or infection, they cause red blood cells to clump together and sink more quickly.The ESR is useful in detecting inflammation in the body that may be caused by infection, some cancers, and certain autoimmune diseases such as rheumatoid arthritis, lupus, and Kawasaki disease. The ESR alone can't be used to diagnose any one specific disease, however.
    If Lupus (or auto-immune disease) is suspected, doctors want to keep an eye on you cholesterol levels in order to minimize the chance of heart disease in Lupus.
    As Lilmisssunshine noted, you have a positive ANA, a High Sed Rate and lupus-like symptoms. As such, these could indicate some type of auto-immune disorder. You might be well served to ask for a specialist in auto-immune diseases; a rheumatologist. Often, these doctors are better versed in the criteria for these diseases and are better able to give you answers to some of your questions. But, please know that Lupus is a very, very difficult disease to diagnose because its symptoms resemble so many other diseases and the disease can evolve very slowly. So, you may not get a definitive answer for months and sometimes up to a year. In the meantime, if you are dealing with a caring and knowledgeable rheumatologist, your symptoms will be treated while awaiting a diagnosis so that you can have some relief.
    Also, we are here to help you as much as we can.

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Hi and welcome to the group. I would recommend that you go see a rheumatologist to confirm the diagnosis. I was first diagnosed with SLE in 2004 after a hospital stay for a blood clot in my lower calf. I went to rheumie and he was a complete quack, he kept asking me the same questions over and over (he wasn't listening) and told me that he didn't think I had Lupus and to come back in 6months. So I wrote it off, still felt bad and didn't find another rheumie until 2007, who ran tons of tests including ANA and then diagnosed me with SLE> My ANA has been negative, then postive and most recently negative. But my symptoms are very real and if you can find a doctor who really understands this and listens to you, that is great! I work in hospital administration and I can tell you that some of the doctors we have out there practicing in this world are unbelievable and very uncaring. It is very discouraging to see a doctor and be treating that way, which makes some people write them off all together! Search for a good rheumie and go.
    Take care,
    Jenn

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    Default Welcome

    I just wanted you to know that the test are always different. my ana is postive and negative depending on the lab. i had my blood sent to a special lab that only does test for lupus and other auto immune and they test was postive for all the test they do. so i would go to one of them. and sticke with their results thats what i did and it works for me.

    This is a nice forum to be in. good luck and be persient with your docs or change them.

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    Default Need Help

    I got my recent blood and urine test results back this morning. doc out of office nurse practionter said i was ok but the lab flag these test results. carbon dioxide 16 low, appearance cloudy abnormal, occult blood abnorma, rbc abnormal 10, epithelial cells non renal abnormal and c-reactive protein 17.3 high. my back has been bothering me for sometime and the meds don't help with pain should i be concern about these test results or not. can anyone help me with this. thanks

    still can't figure how to use this forum i tried useing a blog but angela said to post it somewhere else for help. i can't figure this out but i need help with understanding these test results

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