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Thread: Just Diagnosed, but not convinced

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    Default Just Diagnosed, but not convinced

    Hi Everybody,

    I was just diagnosed with SLE and am wanting the communities opinion because, well, Iím not convinced. Mainly because Iím a white male in excellent health and donít have most of the physical symptoms associated with lupus. Iíll try to give a quick summary of my symptoms.

    For over a year Iíve had many joint/muscle pains. Groin pain. Back pain. Tendonitis in my elbows. Radiating burning from my neck down my chest and both arms. Tingling in my face. Saw many orthopedists and neurosurgeons and pain management specialist, but nobody could explain why these pains arenít going away.

    Then I got a positive ANA test (1/1280, homogenous pattern), which lead me to a rheumatologist. The rheumo did a lot of blood tests for lupus and other autoimmune diseases, and everything came back negative, including the ANA! The rheumo saw some psoriasis on my skin and said I had psoriatic arthritis and prescribed me humira.

    I was confused about that second, negative ANA test, so I went to another rheumatologist, who conducted more tests. Sure enough, a positive ANA (1/640, homogenous). All other blood work was normal though, except for a low, out-of-range C3 compliment level. C4 and Ch50 were fine.

    From the joint pain, ANA test, and low C3 compliment, I was diagnosed with SLE. Thing is, I donít have any of the other symptoms- no hair loss, no fever, no weight loss. Iím not immensely tired, though I do take adderall for ADHD, so that could mask those symptoms. I have a rash from sebbhoreic dermatitis that improves with sun exposure that Iíve had for 15 years, but no lupus-specific rashes. The only sunlight reaction I get is that I seem to get very tired on weekends after I have been in the sun doing choirs, but I thought that was because my joint issues have kept me from exercising for over a year. I recently have begun to get hand/finger joint pain, but there is no swelling here or in any of my other injured joints.

    A slew of other tests (nerve conductivity tests, MRIís, bloodwork) have been conducted which have ruled out other diseases (RA, MS, hepatitis, etc) so I donít know what else would be causing all of these body aches and pains. The doc said that the C3 tests was the test that really helped with the diagnosis, and that the other standard symptoms arenít present because the disease isnít currently active. I'm just finding it hard to believe that I would be unlucky enough to be the rare white male with lupus but without the common symptoms. Thoughts?

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    hi mastiff0, just for the record books..... I am also a white male, that used to be in excellent health. and I do have lupus. in fact there are quite a few males, who are regulars here, that have lupus. I would also question your rheumy who carried out a "lupus" blood test. there is no test that can give a positive or negative result for lupus. we are diagnosed by ruling out many other options, and then by understanding our symptoms. please read some of the posts about diagnosing. 1 of our most informative is http://forum.wehavelupus.com/showthr...upus-Diagnosis
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

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    Actually it sounds to me like you are one of the lucky ones that found a good doctor that actually understand lupus. Those are rare. Symptoms are different for each of us. Tests can come out different for each of us. It is an over all picture that is looked at that gives someone with enough knowledge the answer. I can't tell you if you have Lupus or not but I will tell you that I would have given anything for your doctor early on so treatment could be started. One of the things many of us come to realize is that the things we just assumed were normal for us for years were actually the disease at work. We also didn't know how bad we were feeling because we had adjusted to it. The earlier treatment can start the better your chances of not having the disease progress into the kinds you hear about. Lupus diagnosis are not just given out at a whim but It takes a good doc to understand what he/she is seeing when it isn't classic
    Mari

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    Thanks Stevie.b and tgal

    Sorry if I led anyone astray by mentioning lupus blood tests being negative, I was just trying to be concise since I have a tendency to ramble. After my first positive ANA test, I was given a slew of “panels” to look for autoimmune disease or inflammation - metabolic, hepatitis, urine, CBC, sedimentation rate westergren, RA factor, C-reactive protein, ANCA, CCP Antibody, ANA comprehensive. These all came back within the normal range. I then went to another rheumy who repeated many of these tests but then added others in search of less obvious diseases- thyroid tests, HIV, Nerve conductivity tests, MRI, and the C3/C4 tests. The only things that came back out of range was the ANA and the C3 level.

    The link provided mentions ruling out other diseases as part of diagnosing lupus. Well, I think they have done a thorough job of that. I guess there is a slight chance that its psoriatic arthritis, but my doctor does not want to risk me being on a TNF inhibitor with my ANA so high.

    And tgal, I you may be right that I am fortunate to find doctors who would provide a diagnosis instead of ignoring me. I have been to over 9 doctors, 5 physical therapists, had 5 cortisone injections, and was recommended surgery twice. All of this was for symptomatic treatment. The whole time I just wanted an answer. I guess after a few months of plaquenil I will know if this “answer” is the right one.

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    Hello Mastiff0
    I am another white guy who was in pretty good health and was quite surprised when I was diagnosed 3 years ago.
    Many people here struggle for years dealing with different doctors and a multitude of tests before being diagnosed.
    Mine was quick and easy-an eye, ear & nose Dr. suspected lupus, ran some basic tests and referred me to a ruhemy who ran more tests and concluded lupus.
    I believe what convinced them was an elevated DS-DNA level.(3 yrs later different meds and it still consistently tests very high)

    Good news is that Plaquenol (which seems to be the most common lupus drug) has greatly helped with my muscle and joint pain.
    As well thanks to my new appreciation of the sun I have learned to protect my self using lots of sunscreen and long sleeved shirts with built in spf protection.

    Exposure to the sun can cause internal swelling of muscles, organs and joints with out causing a sunburn or a rash.

    I still work full time(and then some) outside year round and feel overall better now than I did 3 years ago.

    Take Care and Welcome!

    Niall

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    Quote Originally Posted by n.mac View Post
    Hello Mastiff0
    I am another white guy who was in pretty good health and was quite surprised when I was diagnosed 3 years ago.
    Many people here struggle for years dealing with different doctors and a multitude of tests before being diagnosed.
    Mine was quick and easy-an eye, ear & nose Dr. suspected lupus, ran some basic tests and referred me to a ruhemy who ran more tests and concluded lupus.
    I believe what convinced them was an elevated DS-DNA level.(3 yrs later different meds and it still consistently tests very high)

    Good news is that Plaquenol (which seems to be the most common lupus drug) has greatly helped with my muscle and joint pain.
    As well thanks to my new appreciation of the sun I have learned to protect my self using lots of sunscreen and long sleeved shirts with built in spf protection.

    Exposure to the sun can cause internal swelling of muscles, organs and joints with out causing a sunburn or a rash.

    I still work full time(and then some) outside year round and feel overall better now than I did 3 years ago.

    Take Care and Welcome!

    Niall
    Sorry to bust in on your thread but im right now trying to get diagnosed, and think the problems i have during sun exposure have something to do with it. In the sun i cannot breath. I also get red blotchyness , and it all goes away after im out of the sun. Do you have these symptoms? If you have any information about it, i'de love to hear it.

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    Quote Originally Posted by kiaimai View Post
    Sorry to bust in on your thread but im right now trying to get diagnosed, and think the problems i have during sun exposure have something to do with it. In the sun i cannot breath. I also get red blotchyness , and it all goes away after im out of the sun. Do you have these symptoms? If you have any information about it, i'de love to hear it.
    That is what threads are for. So you can jump in when you need to. There is a great thread on photo sensitivity that you should read. Many of us have it. For some they get rashes while others are thrown into a flare and for others it is a combination of both. I will post the link below. Hope it helps.

    http://forum.wehavelupus.com/showthr...IVITY-in-LUPUS
    Mari

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    That's actually one of the questions I've had as well. Can you be diagnosed without having one of SLE antibodies turn positive. Just with ANA and low C3? How low is your C3, Sea Monkey? Mine's 80, right below the Labcorp's reference range but my C4 is also low. But you clearly have SLE symptoms, so your antibodies could turn positive at some later date.

    My understanding is that the antibodies turn positive and the symptoms appear later but for some antibodies like Smith and RNP, it could be almost simultaneous or a bit late. I also think you have a good, knowledgeable doctor, who understands complements. It's very rare for PCPs to understand C3 and C4 and SLE antibodies.

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    This research paper might be of interest to those who have a positive ANA result and are wondering about Lupus/autoimmune disease risk factors:

    http://www.ncbi.nlm.nih.gov/pmc/arti...pdf/ar3271.pdf

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    Hi Sea Monkey,

    I am surprised you started Plaquenil if you were not convinced. I too am a little out of the norm for SLE a white female turning 69 yrs old next month and just dxd in Dec. WHen the Derma said "I think you have Lupus" I responded...."I can't have lupus I'm 68 yrs old". He said.... I could and I did. What a surprise for the Autumn of my life
    I feel I am in denial sometimes....but when I look back at my history I wish I had had a PCP like yours. I ask the question why didn't she see all the signs or did she see them and just didn't want to tell me? Sometimes I feel I would have been better off not knowing about my FMS but with SLE you can't just ignore it. And not everyone gets the rash. The rash was the thing that finally got my dx (biopsied facial skin rash) but my PCP Dr at the time wrongly dxd me and put me on a steroid cream that made it worse. I took myself to Derma it was that or a hospital I was so bad I knew something was wrong. But I had the malar rash for a few yrs and PCP called it Rosacea. And yes I think Adderal will definitely help w/ fatigue. I think my meds for Hypothyroidism help me w/ fatigue.
    My solution is take my medicine, stay out of the sun but carry on as much as I can as usual. I also take Nuerontin and it has a warning that says it makes you more sensitive to sun so avoid long exposure to sun and this past summer I did not heed that warning....
    I wonder about blood types....mine is B positive which is rare in a whites, wondering if blood types might have something to do with Lupus? But I guess they have already looked into that....
    Welcome to the forum
    Heron

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