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Thread: I'm feeling a little overwhelmed...

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    Default I'm feeling a little overwhelmed...

    Hi everyone -

    Very recently I started coming up in a rash on my face, and being a member of the new technology based generation, I decided to Google possible causes of the type of rash that was manifesting itself. I found out that I had a malar rash, and read about rosacea and Lupus and decided to go to the doctor, just in case something more serious was going on (I expected it to simply be allergies, because I'm a very allergy prone person, and I've had eczema my whole life). The doctor essentially told me that he wanted to do blood tests to check for Lupus, and if they came back perfectly fine, he would treat for rosacea.

    I had my follow up appointment yesterday, and my results were a little strange. He said the specific signifiers for Lupus were negative, but my ANA was positive and certainly points to an auto-immune disease, however he can't figure out which one it is. He also says I have an antibody type and pattern that is extremely unusual and is only found in .5% of the human population. Apparently he is unsure of whether I have Lupus or Sjogren's, or something else. I've been referred on to an immunologist/dermatologist to determine which diagnosis is most likely and whether my skin is actually related to what's going on. I think he suspects Sjogren's but I personally haven't noticed the key symptoms - dry eyes and a dry mouth. I've only really started "noticing" a dry mouth since he mentioned the phrase, which points out to me that I probably don't have one. My eyes have been irritated in the past weeks, and I tried taking eyedrops to sooth them - but I've found its more related to light sensitivity (I've had to wear my sunglasses inside sometimes) than dryness or grittiness, and I most certainly still sweat. The doctor did stipulate that its possible I could do the test again soon, and the more specific Lupus criteria will come back positive. So basically I'm in limbo at the moment. I've had terrible fatigue for a few years now, and quite recently my knees and my shoulders have been feeling increasingly sore.

    I'm quite young (very late teens, a uni student) and I'm finding this whole revelation very hard to cope with so far. It's difficult being told that you most certainly have an incurable auto-immune disease, but its downright annoying that its not clear which one it is, and I'm the type of person who really wants to know what's going on, otherwise I panic. Whilst researching the possible prognosis' and the symptoms involved in both Lupus and Sjogren's, I think I have made myself paranoid. I'm now convinced that my hair is thinning (despite there being no evidence for such a claim), that my teeth are going to rot because of a lack of saliva (which as I said, I haven't noticed)...its really getting me down. Am I being silly? I've read accounts of many medications for these illnesses making people gain weight and lose hair and I'm already feeling quite emotional and upset. I really just don't feel like I'm coping well with the prospect of such a life change, because as we all know teens think they are invincible - but now suddenly I'm reading lists of symptoms with the words "increased risk of cancer" and "organ damage" in them and I can't believe this is happening.

    Do you guys have any tips for me, dealing with the early stages of diagnosis? Also, I know most people here aren't doctors, but do you think Sjogren's is likely if I haven't noticed its predominant symptoms?

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    Hi MsMarvel.

    First, you need to take a deep breath. I know, this is very scary, but it could take a long time, to get a diagnosis. For some of us, it took months or even years. It is important, that you don't worry to much.
    I can go and google some of my symptoms and the results scare the pants of me.
    Even if you have Lupus or Sjogrens, or both like I do, I also have Rheumatoide Arthritis, you will learn to live with it. Once you are diagnosed, the doctor will find the right meds for you.
    Have you been to a rheumatologist yet?
    So, try and relax, everything will be alright.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    hi msmarvel,
    when i first found out i had lupus, i also started using the internet to "find out" what i could.

    what i found was scarey.
    the first information we usually find tells us all the bad symptoms.
    we are then armed with all bad and no good news.

    please, as was stated earlier, slow down and take a deep breath.
    the concept of having one of these deseases is confusing.....
    but "do not borrow trouble".
    please talk to your doctor about a referal to a rhuematologist.
    this type of doctor specialises in auto immune disorders.

    you will need quite a few tests to help "eliminate" lots of options.
    most auto immune disorders are diagnosed by symptoms, and ruling out other options.
    there is no positive test for most of these problems.
    some of them have positive tests, and they are very specific.
    so most doctors take lots of blood, and do lots of tests, before offering a positive diagnosis.

    we do have quite a few other members here who are close to your age.
    so you are not alone in this.
    please keep up the correspondence with us.
    most of us have been through the same issues you are facing.
    this site exist purely to help each other.
    by helping you, we also help ourselves.
    so please feel free to ask what you need to.

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    I have both Lupus and Sjogren's (as well as Raynauds and APS) - these things often run in packs. My Sjogren's is considered secondary to the Lupus, and often when that is the case, the symptoms are not as severe. I had never even heard of Sjogren's until the doctor came in the office and told me I had it - I guess the blood tests were pretty conclusive, along with other symptoms...though my symptoms are really very mild. I have had some dry mouth on and off the last several years, but like you I assumed it was allergies, or not drinking enough water, etc. I never had any of the internet horror-story stuff like not being able to swallow food, etc...and my eyes pretty much never get dry.

    The little bit of dry mouth I had has all but disappeared with treatment (I take Plaquenil and Methotrexate). For me, the most serious symptoms have been FATIGUE, achiness, trouble regulating body temp, and sleep disturbances. There's a laundry list of lower-grade annoyances, but the kind of constant flu-like feeling has been the worst - and medication has taken care of probably 80% of that. It comes and goes - but mostly I feel better now. Not totally-healthy-better, but enough to carry on with life. I hope it stays this way.

    Sometimes symptoms are mild and handled easily with Plaquenil. I ended up on Mtx because the Lupus decided to attack my inner ear and I lost most of my hearing in one ear (the other one's fine - and this is a pretty rare complication, so don't sweat it...)...I am kind of kicking myself for not wanting to treat the Lupus more aggressively from the beginning. I wonder sometimes if the hearing loss could have been avoided if I had started on Mtx earlier - but I hate taking any kind of medication so we went for the more conservative option. It's a tricky balance.

    The most important thing is to work with your Rheum. It's good that you feel pretty healthy and the rash is the most obvious symptom - you are probably catching it early, and hopefully you can keep in in check. It's kinda like having diabetes or epilepsy or some other chronic disease - you have to see doctors more than you'd like and you have to manage your healthcare more carefully than most people, but it IS possible to lead a pretty normal life. It's no picnic, don't get me wrong...but after the initial fear wears off a bit and you get on a routine, you just take each day as it comes just like everybody else. Sometimes it CAN get bad...but I figure that's true of ANYBODY's life, not just people with Lupus.

    Best of luck to you - let us know how things go!

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    I wish your doc had sent you to a rheumatologist first, instead of the immunologist, but oh well. we'll be thinking and praying for you from here MsMarvel. Ask about thyroid issues when you go see the other doc.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    It is very hard and very confusing in the beginning. You want to know what your body is doing but for some reason they just can not see the whole picture yet. When I first got sick we actually did a spinal tap.............that is very extreme and you will probably never need one. They could see the disturbance right there in my DNA so the referred me to a rheumi. At my first appointment he told me to think of my disease as a seed. It has been planted and is there but what seed it is time will tell. He told me you have to wait as the leaves pop up, stem grows and finally shows itself. It is there but until they can see it active it just needs time. As the person who feels so yucky that is very hard to hear. I always want to know what is going on and I want to feel better. I also would google until the cows came home and all that did was scare me like it has you. So, walk away from the computer.......or just the google you are doing about everything. What is there is there and you will find help and you will find some relief it just takes a little longer than we would like. Just hang in there and vent to us whenever you need to! We are here for you and to help you get through this process. You are not alone and we all have been there so use us as a resource to bounce ideas off of us and remember we are now part of your very important support system!!!!!
    As I grow to understand life less and less,
    I learn to love it more and more.

    Age 29, Lupus for last 7 years

    Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram

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    Hey guys -

    Thank you very much for your supportive replies. Having people who are talking to me about this, who actually understand it and have dealt with it themselves, is a great comfort. Its unfortunate that with auto-immune diseases, a proper diagnosis takes so much time. I hope in the future other younger people who receive this news will have the comfort of a quick diagnosis, and maybe even a cure.

    I believe my doctor referred me to the immunologist/dermatologist, because he has a useful double degree and I won't have to necessarily visit two different physicians on two different days (and pay two fees) for a consult. He is trying to first determine whether this malar rash is linked to my results, or whether its manifesting from some other separate issue. I think my doctor is trying to eliminate some factors as quickly as possible (for example if this immunologist/dermatologist doesn't see the malar rash as linked to the results - then he may focus more on Sjogren's, but if it is, then that rash is obviously very characteristic of Lupus).

    Now that I'm aware of this strange antibody phenomenon, a lot of my past troubles that originally seemed random actually make sense. For example I once had a routine blood test which showed anemia, but then I took another only a few days later and it was completely gone. A similar thing happened where a blood test showed a high enough cholesterol reading to indicate heart disease (as at that point I was 17 and had a vegan diet, it seemed strange) and I took a test soon after, and it disappeared. I've always had problems with fatigue and stamina, I had a two year episode of depression, muscle aches/growing pains despite being past the age of growth/back problems, at one point I was diagnosed with pleurisy after a 3 am dash to a hospital and ever since I constantly have symptoms of bronchitis but whenever a doctor checks for it it isn't there, recently I've been feeling like I have the flu for about 3 months - I was given three courses of antibiotics and the symptoms didn't fade and I was tested for the flu but it came up negative.

    I've started taking a series of vitamin supplements (like D, B, E, echinacia, krill oil etc) - because even though I don't have a specific diagnosis, I would like to be as proactive as possible. I have been reading about the medications prescribed for auto-immune disease, and to be honest they do worry me a little bit. It looks like you have to take a steroid and personally the concept of me, a young woman, taking a steroid for the rest of her life is a little worrying. I actually have a friend who is on steroids for other issues, and he is finding it rather miserable. The side effects of many medications also don't look particularly pleasant. My mother is quite skeptical of the whole thing, and she does have a strong belief in Eastern over Western medicine (that happened when her boyfriend was diagnosed with very late stage cancer, told he had 6 months to live - he refused chemo and took an entire year off, took vitamins, went on leisurely walks, meditated, did yoga and drank malasis, and he was later told the cancer had completely vanished - he is fine to this day).

    I'm quite worried because some of my symptoms are actually becoming quite difficult to cope with. I'm extraordinarily tired (bare in mind I've had extreme fatigue for years, so its stepped up a notch past extreme), my knees are aching terribly as are my shoulders and back, and I can't eat anything - this bit is quite strange to me. No matter what is is I eat (milk, fruit juice, a sandwich, pasta, vegetables) I get an extremely bad stomach and chest ache afterwards which is incredibly uncomfortable and its causing bowel issues - to the point where I am afraid to eat at all, even snacking exacerbates it. I've had this really strong pressure in my chest (once again the weird bronchitis symptoms) and its difficult to sleep sometimes. I have to sit downstairs with the lights off and night because they irritate my eyes so terribly. I've been taking typical painkillers but they don't help terribly much. I have to go to University four days of the week (the commute is about 3 hours a day) and with these symptoms, I'm scared to go. My rash is also pretty consistent.

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    Oh, I also have a nucleolar pattern. Now that I've researched it I think I'll lock myself in my room for the rest of my life. Ok...I should really stop googling stuff.

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    Quote Originally Posted by MsMarvel View Post
    I've started taking a series of vitamin supplements (like D, B, E, echinacia, krill oil etc) - because even though I don't have a specific diagnosis, I would like to be as proactive as possible. I have been reading about the medications prescribed for auto-immune disease, and to be honest they do worry me a little bit. It looks like you have to take a steroid and personally the concept of me, a young woman, taking a steroid for the rest of her life is a little worrying. I actually have a friend who is on steroids for other issues, and he is finding it rather miserable. The side effects of many medications also don't look particularly pleasant. My mother is quite skeptical of the whole thing, and she does have a strong belief in Eastern over Western medicine (that happened when her boyfriend was diagnosed with very late stage cancer, told he had 6 months to live - he refused chemo and took an entire year off, took vitamins, went on leisurely walks, meditated, did yoga and drank malasis, and he was later told the cancer had completely vanished - he is fine to this day).
    In regards to the subject of so called alternative/natural treatments, I would ask you to please read the site rules outlined in this post-

    http://forum.wehavelupus.com/showthr...anned-From-WHL

    Thank you,

    Rob
    Moderator

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    Quote Originally Posted by MsMarvel View Post
    .....I've started taking a series of vitamin supplements (like D, B, E, echinacia, krill oil etc) - because even though I don't have a specific diagnosis, I would like to be as proactive as possible. ......
    please do a little research on echinacia.
    i believe it is not a good thing to take.... if you have auto immune problems.
    it is taken to boost the immune system.
    if you system is already on overdrive........

    i used to take it for colds etc.
    but not any more.
    please read up on it.

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