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Thread: New here... not yet diagnosed.

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    Default New here... not yet diagnosed.

    Hi everyone,

    I should say first off that I have not been diagnosed with Lupus, but am seeking information about the disease and how to proceed from here.

    Last friday I wound up in the emergency room with a severe rash on my cheeks, nose, forehead, neck and collarbone, with swollen lymph nodes and enough swelling around the base of my neck to look like I was growing a second head. It was assumed that I had an allergic reaction to something I ate, was treated for allergies and released.

    Several days later it happened again, only I had not eaten anything. The only thing in common for both events was that I had been out walking in the sun both days performing errands. Yesterday I developed a painful sore on the side of my tongue which are a recurring problem for me. I've always just written them off as cold sores. I have frequent bouts of edema in my abdomen and legs and my mouth is so dry right now my lips stick to my teeth and gums which is highly annoying.

    I guess I could just use some input as to whether Lupus is something I should ask my doctor to pursue. I have been fighting a debilitating fatigue for about 5 years now, I've got chronic sinus inflammation noted on my mri's, my lymph nodes (neck, armpits) are almost always swollen, I always feel like I'm 'fighting' something, and my temperature is always a degree or two high, but never high enough for 'concern'. It was 99 at the emergency room the other day.

    At my wits end here. Thanks for any advice.

    Digger

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Digger,

    Welcome to WHL. My name is Rob, and I was diagnosed with SLE in 2004. I have most of the symptoms you are talking about. Your rash associated with being out in the sun, the fatigue, dryness, and the mouth sores are some of the more common symptoms of SLE. In my opinion, those symptoms would justify asking your Dr. about the possibility of Lupus, and possibly getting a referral to a Rheumotologist.

    I certainly hope that you do not have Lupus, but as you said, you feel like you are fighting something, and you need an answer in order to get your problems treated. I would write down your symptoms and note the frequency of them, and also note any activities associated with your symptoms, such as being in the sun then getting a rash.

    Lupus can be a hard thing to diagnose, and unfortunately there are many doctors and rheumotologists who know very little about it. Many people are told their symptoms are all in their head, and not to worry about it. Well, you know your own body, and if you think something is going on, you should get yourself checked out. You are doing the right thing in educating yourself about the possible causes of your symptoms. There is a ton of excellent info here, and some very understanding people too. Please let us know how this goes for you, and don't be afraid to ask any questions you may have. Once again, welcome.

    Rob

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    Thanks Rob,

    I really appreciate the reassurance.

    The strange thing is, the rash only erupted where my neck and upper chest were exposed to the sun by my v-neck tshirt, and on my cheeks and nose. The ER doctor confirmed that it's not a sunburn. Sun isn't even that high here anymore. A food allergy was the only other thing they could think of to pin it on. I just have to approach my primary care physican very tactfully, as I don't want to appear like I'm fishing for a diagnosis. Which I'm not. I just need to connect all the dots.

    He's a really good guy though. I've put him through a lot already with my kidney cancer at age 37, and a rare cardiomyopathy after that. I'm beginning to think I just plain have bad DNA.

    Thanks again,

    Digger

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    Hi Digger,
    My name is Kathy and I have SLE and Sjogrens and several other auto immune disorders big time. I am wondering from your list of Symptoms if you may have Primary Sjogrens. You can also get a host of different rashes with Sjogrens. I also wonder about Sjogrens due to the severe dry mouth and swollen neck nodes wich could be the Perotid glands. You can also have sun sensitivity with Sjogrens as well as Lupus. I think that they should test you for both of these illnesses as they are both Auto-immune disorders. Let us know how it goes with the doctor.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Hi Kathy and thank you,

    Quick question: I've been reading up on some of the tests, specifically the ANA blood test. Is this only accurate if you have it performed while you are having a flare-up, or are the antibodies present all the time?

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    Wow, I must say that this site has been very eye-opening. I was looking over the alternate criteria for Lupus and it's almost scary. I just happen to be allergic to Sulfa drugs, I'm extremely claustrophobic and/or agoraphobic, I have panic attacks in crowded places (shopping malls, theaters, parties), I break out in a drenching sweat wherever there are lots of people around, even if they are people I know, and when I was 12 I got mononucleosis so bad I had to be hospitalized. The information I've gathered here already is just staggering.

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    Hi you, Digger...welcome here....

    Regarding your question, ANA test accuracy....Can be used as a gauge for the activity of the disease along with other tests, CBC and your symptoms too as well as part of a diagnose.

    But note, a positive ANA doesn't necessarily mean Lupus, nor does a negative mean no Lupus...maddening isn't it.

    The test is accurate if performed correctly regardless..it is just a tool to assist in diagnosing many diseases and Lupus is one of them. Lupus is also a great mimicker of many diseases that is why most of the time a diagnose never seems near...

    Fishing or seeking a diagnose...having many symptoms, I would suggest sharing your thoughts on what you feel it maybe, Lupus to your doctor. One shouldn't have to be tactful with their doctor or worry about putting him through anything.

    Your health, your body, your time, your money...you have to be the advocate for your care, so please share, It is a partnership....


    Keep looking for your wellness..hugs,
    Oluwa
    I have Lupus. So *^#@! what.

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    Hi Oluwa and thanks,

    My doc can't see me until sometime next week and this rash is really frustrating. I was outdoors for only about an hour today and it really hurts again, as well as this sore on my tongue. My left side hurts when I take a deep breath, my neck hurts when I turn my head, and I think I'm carrying some fluid again. If I'm not better by morning I think I'm going to go back to the hospital and be seen as an outpatient.

    Thanks for letting me whine.

    Dig

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    Hi Digger...

    I've had a bout with the rashes all year. On and off for days rolled into weeks. Currently, I am tangling with one right now...g-g---r-r-r-r.

    Scratching till I am black and blue, bleeding....the itch, isn't it maddening. Scabby and crabby from the itching. This bout almost three weeks. Many restless nights. This time started as a small patch on my hinder..now it is on my elbows, knees, stomach, lower back...last bout was all over my neck and chest...

    Do you have any cortisone cream, OTC or prescription strength? Oatmeal for a bath? Maybe antihistamines, pills or cream? Maybe you should ensure you are covered, hat, sunglasses, clothes and sauve with a sunscreen on the naked spots before going outside.

    Avoid too warm of showers. Use mild soap, Cetaphil..baby cleansers. Dab your skin dry...use a mild lotion...

    Wear smooth clothing as not to irritate your rash.

    The Four Rules Sun and Lupus.
    1. The first rule is to stay out of the sun, especially during the middle of the day.
    2. The second rule is to wear a good protective sunscreen of SPF 30 or higher. Use the sunscreen on all exposed skin areas, including the hands.
    3. The third rule is to wear a hat with a broad brim.
    4. The fourth rule is to wear long sleeves.

    For the sore in your mouth...try rinsing your mouth out with Milk of Magnesium or liquid Benadryl, then spit it out. Some say it brings relief. Avoid chips and the like, salt licks..., soda pop, alcohol, spicy foods...crunchy foods.

    If you do have Lupus, the sun could be bringing about a flare...hence the rash and mouth sores....

    The advice, suggestions above is what a Rheumatologist would give you....or he may give you a dose of steroids, Prednisone...but I would suggest trying the above first.

    If you don't have a prescription strength cortisone cream ask for one.

    Keep well...
    Hugs,
    Oluwa
    I have Lupus. So *^#@! what.

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    Oluwa,

    Thanks so much for all of the great advice.

    No worries about the hot shower, I've always been a bit temperature sensitive so warm is about as far as I go. I do have some OTC benadryl I will try taking tonight. If nothing else, it will make me drowsy and maybe I'll get a few hours sleep. Other than that I don't have too much around here. I'm a bachelor and a graduate student so you could say my apartment is a bit 'spartan' in supplies and I really don't feel like a trip out to the store.

    Appreciate all of your help.

    Dig

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