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  • I think I may have Lupus

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    Old 02-03-2004, 06:52 PM   #1
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    Unhappy I think I may have Lupus

    I have come to this based on a few things, about 2 months ago I noticed an enlarged lymph node behind my ear, went to my GP and he put me on antibiotics (didn't work) went to an ENT who then put me on Biaxin (didn't work) but he was not to concerned about it. Changed ENT, this doctor said I did have slightly swollen lymph nodes, and because it was going on 2 months, sent me for a CT scan (came back normal). since then, I have just not been feeling well, very tired, and then started getting night sweats, waking up nauses, very nauses. I decided to weigh myself because of the nausea on & off, I was not eating right, I weighed in at 95 pounds! I am normally about 103. I am going through a rough time in my life, I lost a loved one, and a lot of stress at work, I went to a new GP, who decided after my CBC came back normal that I am dealing with stress & anxeity. I also have been having slight pain in my stomache, up high.
    Here comes the part that I never tied into not feeling well, The numbness or pins & needles I get. I have been getting this for a long time, at least 2 years if not longer. I will be sitting at my desk at work & 95% of the time when I get up, my legs & feet are "asleep" I always attributed it to the way I sit with my legs crossed. I also wake up with my feet & hands asleep, and they get ice cold, even when everyone else is warm! I have a bad habit of sitting on my feet like a big kid, and I always get the pins & needles, but I have not been doing it lately & I still get the pins & needles ( i have them right now). I have been experiencing "sensative" elbows, it bothers me to lean on them (like I am right now typing this) and sore behind both knees, actually the back of my legs, and in my right ankle, in the back (is this joint pain?). My rists also have a funny sensation and my fingers get swollen. Now, I have not had fevers, or a a rash on my face, but what I do have is: numbness in my limbs, very cold hands & feet (but I don't notice color change), what seems to be joint pain, weight loss, slightly swollen lymph nodes, always tired, nausea, stomache pain that comes & goes, and I am finding it hard to concentrate & focus at times, my eyes feel hot, but not really dry, and the other day I had this really weird muscle spasm that lasted the better part of the day in my lip! If anyone thinks this sounds like I may have the symptoms of Lupus please tell me. Thanks for reading.

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    Old 02-03-2004, 08:18 PM   #2
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    Re: I think I may have Lupus

    Hi SandyGirl and welcome to the board

    It really sounds to me like you do indeed have Lupus symptoms. I would ask your GP to run the blood work for Lupus. Also, in your CBC a doctor doesn't really notice some of the "mildly" low things that can occur with Lupus, such as the Lymphocyte level. That can often be low in people with the beginnings of Lupus. Do you have access to all of your old charts? I would try and get them and have a look at them to see what is going on in them. Also, ask your GP to get that blood work done soon so we can see where you are at. I must add too that you can have Lupus and not have the positive blood work. There are about 5% of people out there that have Lupus but never show positive blood work! And in some people the Anti-Nuclear Antibody (ANA) can go from positive to negative at any time. Lupus is VERY tricky to diagnose, so I would recommend getting an appointment with a specialist that ONLY sees Lupus patients! You can ask anyone on these boards.. many people have crappy appts with Rheumatologists that don't recognize Lupus symptoms easily! It's terrible, but it can be such a long haul!

    While you are asking for the blood work for Lupus, I would recommend that since you have the tingling that you get tested for Antiphospholipid Syndrome (APS). I have a post entitled "Neurological Symptoms and possible Lupus? Please read". Please check that post and read the symptoms to see if you fit. Mainly people with APS complain of headaches/migraines, tingling/weakness in the extremeties and have a history of TIA's (mini strokes), strokes, leg clots (DVT's), or miscarraige. Have a peek and see what you think. If you do fit that criteria, go and get tested. AND the APS tests can be negative and you can still have it too! APS goes along with Lupus, or can occur on its own in some patients. I really think you need to see a Rheumatologist and get all of your old blood work to look at. Could you even just get copies of your latest blood work? If so, please post anything here with a "low" or a "high" marking on it and I can see what it all seems like You take care and talk to you soon!


    Old 02-03-2004, 08:45 PM   #3
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    Unhappy Re: I think I may have Lupus

    Thank you so much for replying so quickly... I am really scared. I was so happy when my CBC came back normal, but I still feel like poop. I have an appt tomorrow with my GP, what should I ask for in particular? A CBC does not check for ANA? Can he Check that or do I have to go to another doctor for that? How long does it take for the results?
    I know in a past CBC I have been anemic, but that is it. I do not suffer from headaches, other than the occasional like anyone, but I have to say my chief complaint is the cold & tingleing hands and feet which seem to be pretty constant the past week. The weird soreness behind my legs & ankles, my hands & writsts, Nausea & stomache discomfort, & hot eyes.
    Also: My GP wants me to go for an upper GI Series due to my stomache pain, he thinks I may have the beginning of an ulcer, would the camera test show any other signs?
    Thanks for your help.

    Old 02-04-2004, 06:32 AM   #4
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    Re: I think I may have Lupus

    First I'd like to say that I'm new in here and tht English is not my primary language, so please try to understand when I write things in a weird way LOL

    Ok, the reason why I'm writting this in here is because this is one of the topics I came first today and I'm starting to be a little scare because most of the sympthons you're having, I have them too. When I read the first message in here I thought that everybody would reply telling you that you didn't have any kind of signs of lupus. The
    not been feeling well, very tired and specially the hands and feet cold are things that I have had for a long time. I'm theonly one in my family that's always cold. My mom thought I could have some kind of problem in my thyroids because at that time it was impossible for me to lose any weight no matter what I did and because of my cold...
    But my test came out normal.
    I also lost a loved one a couple of months ago and it's getting very hard for me to cope that... but most of the things I'm feeling I thought they were because of some kind of depression. Most of the sympthons started to get worse lately. It's amazing how tired I can be even when I sleep a lot.
    A couple of years ago I started getting really interested in this disease and I used to know of memory everything about this disease and I remember that while I was donig that I did see that I had many of the sympthons (I had more than the famous 4 of ten) but I didn't pay much attention to that because when I told my mom about it (she knows a lot about medicine) she told me that every time someone reads about a new disease thinks it has it... it's like paranoia... She told me to relax and laugh...
    But now I'm worry again because I see myself in Sandygirl. I never thought someone could see a possible Lupus in there.

    What should I do? Get tested? Does anybody know any doctor in Argentina that works with Lupus?

    Sorry for the long post!!


    Old 02-06-2004, 10:08 PM   #5
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    Re: I think I may have Lupus

    Hi Solcita,
    I can only tell you to go get tested, my regular doctor is the one who took the Lupus blood work from me, from there if a diagnose of Lupus is the case, the doctor to see is called a Rheumatologist (not sure if I spelled it right). Good Luck.

    Old 02-09-2004, 06:12 AM   #6
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    Re: I think I may have Lupus

    [quote]A CBC does not check for ANA? Can he Check that or do I have to go to another doctor for that? How long does it take for the results?[/qoute]

    No a 'CBC' is a complete blood count, but does not test for specific things like ANA tests...CBC gives info on white and red blood counts. The complete blood count is the most common blood test done. It analyzes the three major types of cells in blood: red blood cells, white blood cells, and platelets. It counts these cells, measures the hemoglobin levels, estimates the volume of red cells and sorts the white blood cells into 5 subtypes.
    An ANA is a specific test to check for the anti-nuclear antibiodies in the blood-Antinuclear antibodies (ANAs) are unusual antibodies, detectable in the blood, that have the capability of binding to certain structures within the nucleus of the cells. ANAs indicate the possible presence of autoimmunity and provide, therefore, an indication for doctors to consider the possibility of autoimmune illness. BUT...the ANA is NOT a conclusive test to rule out Lupus! Most GOOD rheumy's will do a series of tests and go by the symptoms you present(criteria)
    ANA is also used for many other rheumatologic disorders such as Sjogren's syndrome, rheumatoid arthritis, polymyositis, scleroderma and others.
    Some of the symptoms you mention are symptoms of Lupus, but they are also symptoms of other things as well. You may even have Fibromyalgia.(I have that along with Lupus, Raynauds, Sjogrens, APS, etc, etc, The coldness and tingling sounds like Raynauds. You defiantly need to see a rheumy...a GOOD one! lol
    Best of luck with everything! Keep us informed!

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