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Thread: Lupus diagnosis advice

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    Default Lupus diagnosis advice

    Hey guys, I hope I'm in the correct forum. There didn't appear to be a set home for posts related to pre diagnosis.

    I was talking to a friend of mine, who suffers with lupus, about some life long issues I've had. She insisted I be tested for lupus. I'm doubtful though. I'm hoping you guys can give me your own opinions, as to whether it's an avenue worth going down.

    Since the age of 13 (now 30) I've had massive issues with fatigue and brain fog. Though the fatigue is mainly mental rather than physical. I just feel drained 24/7, regardless of sleep.

    I have a terrible sensitivity to fluorescent lights. When under them, my eyes become bright red and if the lights are close enough, I'll start to feel weak, sick and irritable. My skin also becomes irritates and sore. It actually appears to effect my entire body. Strangely, I don't get the same reaction from sunlight.

    My eyes are generally sensitive. The inner, lower eyelids especially. They are inflamed and red most days. When they're not, they quickly do so the second I visit tesco, boots or other stores that have flourescent lights.

    I have extremely sensitive skin. Especially on my face. I react to almost every moisturiser in existence. I've found one by Avene that doesn't make my face sore and red.

    I recently did a biocard home test for celiacs, which tested positive. So currently living gluten free. I only mention this, as it's also an auto immune issue.

    I also have other random symptoms such as mild depression, anxiety etc.

    Anyhow, the fact I'm not bothered by sunlight, makes me believe lupus is unlikely. What do you think? That said, being out in the sun does make me tired. But that's normal for most people? But my eyes don't get sore with sunlight.

    Many thanks for your time,

    Maverick

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    I can't tell you if it is or is not Lupus. I can only tell you that you have some indications of an autoimmune disease, which could be Lupus. The only way to know for sure is to have the testing done, compile your medical history and present it all to your doctor, preferably a rheumatologist, as they specialize in auto immune disorders and diseases. Even then, a diagnosis is not easy to get, especially on the first try, but, there have been some that were diagnosed quickly. Lupus is the great imitator, and mimicks so many other diseases, as well as, often has combo or companion diseases that complicate a diagnosis by leading the doctor doing the testing down one path and then another.

    It sounds like you don't believe it's Lupus, but, you don't really know yet what it is. There is every reason, based on your post, for you to pursue some kind of diagnosis that will help your doctor to begin treatment of your symptoms so you can have some relief. Even if it isn't Lupus, at least you'll have that.

    Best of luck to you, I hope you find your answers.

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    Hi and welcome to WHL! We are so glad that you found us. As was mentioned above Lupus is often not easy to diagnose however when people have 1 autoimmune disease it is likely they may have others as autoimmune disorders seem to overlap.

    You say that you are not sensitive to the sun however you then say it makes you tired. You stress that you are sensitive to light (by the sound of the post it seems like florescent lighting) which has UV rays like the sun. Several autoimmune disorders have photosensitive and Lupus is one of them. There is a sticky in the newly diagnosed section that gives the 11 criteria for diagnosing Lupus. You might want to take a look at it. I am also posting a link to a very easy to read/understand (and very general) description of some symptoms common to autoimmune diseases/disorders.http://www.gethealthyagain.com/autoimmune.html. I agree with Teresa that the next step should be a rhuemy for some testing. There is no actual test for Lupus but it is a tool that can be used to help give a diagnosis.

    None of us can tell you if you have Lupus or not but you have come to the right place to ask questions. The people here span the spectrum from undiagnosed to newly diagnosed with 1 or more diseases to people that have lived with autoimmune disease for decades.
    Mari

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    hi maverick,

    so glad that you found us, and i hope we can help you find out what is happening to your body. As both Teresa and Mari are said, the next step is to begin the lab tests to see if your ANA is positive for an auto immune disease. Usually, your PCP will conduct this test, then send you to a rheumy if the results are questionable.

    For your part, you can expedite a diagnosis by learning all that you can about the many symptoms of AI issues, then start yourself a physical health history log. You should document anything that you can remember, and keep a current daily log of your symptoms. Diagnosis of an AI disease requires both positive lab reports and personal health criteria.

    I know you are worried, this is a very frightening period of your life. I hope your drs. can help you answer the questions, and get you started on a treatment program that helps you feel better very soon.
    Phyllis

    share a smile today

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    Thanks for the responses, very much appreciated.

    I've pretty much given up on my Dr, he ran some tests for low iron and TSH. My iron was low, but within range. My TSH was 0.7 and according to him, I couldn't possibly have issues with thyroid, which I know isn't true. At this point, he didn't "feel the need" to conduct anymore tests. Despite 17 years of exhaustion and my other symptoms. Everything I then suggested, he looked at me like I was crazy.

    Even the celiacs, he wouldn't test me for, so I had to do the home test. I did it twice and made my house mate do it twice, just to make sure. I also researched the biocard test kit, which is the same kit they use in the labs, here in the UK.

    So yeah, I've given up on my Dr. I'm going to have to go private, at least until I can gather enough evidence of me being sick, to convince my Dr. It's crazy that I should even have to do this, once I find out what is wrong, I can see myself kicking his ass

    I am going to book some appointments for private blood work and get to the bottom of it.

    Speaking to some friends today, apparently it's not normal to feel exhausted after being in the sun for a few hours. hmmm. I also went on a sunbed today, and noticed that I got a prickly, tingly kind of feeling all over and went a little blotchy but it was nothing horrific. I'd noticed this before, but again, something I figured was normal because I was getting hot. It's strange when you've had an issue all your life, there's no real benchmarks for what is and is not normal.

    Thanks again for all the advice and the warm welcome

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    Hi Mav,

    Your doctor sounds like so many we run across. There are actually several threads at the moment where we are complaining about doctors. They dismiss us by thinking we are lazy, crazy or hypochondriacs. One of the first things this site taught me was that the doctors work for me and I can fire them if they are not doing their job! Sounds to me like it is time to fire one! One thing to keep in mind is that with Lupus or any autoimmune disease you can't live and die by the blood work. There are times when you are not flaring that the blood work may be OK but that doesn't mean you don't have it. It is a combination of symptoms and tests. That is why we all search for that one (hard to find) doctor who actually knows what he/she is doing.

    I think most of us understand the comment about it being strange what we come to think of as normal. We have to learn that our normal really isn't the normal for most people. I am glad that you found us and please let me know if there is anything that I can do to be of assistance in any way
    Mari

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    ~Winston Churchill~







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    Before I forget Tgal, the article you linked me to, is awesome! I've been reading it all day.

    Regarding my Dr, I certainly felt like a hypochondriac talking to him. In some respects, right now, perhaps I am. But I don't want to be sick, I just am, yet don't know why. And that's just it, I want to know and right now, online forums and Google, are my only sources of knowledge.

    I've recently found that I'm sensitive to night shades. Every time I eat potatoes, they knock me out. Doing a little research, it appears that's fairly common with autoimmune disorders, interesting.

    I cannot wait to find somewhere to have tests done, waiting for the results will kill me, so impatient! I'll keep you all updated on any progress I have.

    Thanks tons for such an awesome, warm welcome

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    Hi, Just to let you know that when I was diagnosed I had all the tests done one day and everything came back normal. Six weeks later at a different hospital (i was totally crippled up by this point), I tested positive. It can all of a sudden hit you like a mack truck. If you aren't getting results from doctors try some of your naturopathic people in the UK. They are very good. I went to someone in Kew Gardens. I believe a lot can be cured through diet. Also, if you are able The London Lupus Clinic is a very good starting point.

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    Welcome to our website and i agree with the others sometimes these dieases take a long time till they are diagnosised properly and dealt with. We all have many simular complaints and some have others. But we are all here for each other to vent and get things out of our systems especially when the doctors are not understanding. I myself have a wonderfull rheumatologist and am confident in the treatment he has me under i am sorry there are so many incompetitent ones and i hope you find a good one. Love Bonita

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    Quote Originally Posted by Maverick View Post
    So yeah, I've given up on my Dr. I'm going to have to go private, at least until I can gather enough evidence of me being sick, to convince my Dr. It's crazy that I should even have to do this, once I find out what is wrong, I can see myself kicking his ass
    Hello Maverick,

    I had to laugh a bit, because you remind me of, well, me! I have a bit of history with being rather harsh to some of the so-called "specialists" I've had to put up with over the years.

    All kidding aside, I think you are doing the right thing in being assertive and pushing to find answers. Your symptoms are somewhat like what mine were back before I got my SLE diagnosis. I would get sick from being in the sun. It started out quite mild, and felt like I had a head cold, or a case of the flu after UV exposure. And there was an overwhelming feeling of fatigue despite the fact that I was physically very fit and quite used to leading an active lifestyle.

    I can't really add much more to the good advice you've already received. I would just say that you should trust yourself. If you think something is going on with your health, there very well could be. I was told that I was just a hypochondriac many times, but it turned out that I was not.

    I hope you can find the answers you need. We'll try to help you any way we can.

    Rob

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