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Thread: Hello

  1. #1
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    Default Hello

    New here...no official diagnosis as of yet...I have had 5 positive and 7 negative ANAs...so no definite diagnosis.
    Am male, 53, been struggling with health issues my entire life.
    2 and a half years ago I got very sick...over the first 6 months I went from 235 pounds to 144 pounds...no one could figure out what was going on. Pharmacists suggested I try celiac diet, made a huge difference and have been holding steady
    at 165 pounds for quite a while. Have periods of severe scleritis in right eye. Chest and armpit pains are becoming more frequent recently...not sure what the heck is going on. And don't get me started on the brain fog..sheesh
    Have butterfly rash often, am very sun sensitive...break out in a hellish itchy rash with mild sun exposure...guess nudism is not in the cards for me....
    Just looking through the posts to see if anyone has had similar problems and for treatment ideas.
    Also have moderate to advanced stenosis C1 through C4
    Have no access to painkillers as they all make me very ill. Current meds are valium, ativan and weekly B12 injections. Have steroids for my eye when I need them
    Not very good at introductions....takes me a while to feel comfortable putting myself out there.....

  2. #2
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
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    Default

    First let me welcome you to WHL! We are so glad that you joined us. I am writing from my phone so this is going to be short but I did want to say hello. I will write more tomorrow when I am on my computer. Until then, please make yourself at home and I look forward to getting to know you!

    OK, I had to grab my computer to do some other things on the site so I decided I had a few things I wanted to say to you. Lupus is such a hard disease to diagnose because there is no actual test for it. The criteria used to diagnose are compounding and don't have to be there at the same time. Once you have a positive ANA it stays on the list. Having a positive ANA doesn't mean you have Lupus. Many people without Lupus have a Positive ANA but it is something very common with us and it is part of the criteria used to diagnose us so once you have it it stays on the list. It doesn't matter if you have 40 more ANA tests that all come out negative... positive ANA stays on the "criteria list" (I am going to post a link to that at the bottom of the page). Lets say you end up with a Malar Rash (butterfly rash) somewhere down the road and then it goes away. It still stays on the list. Once you have met 4 of the 11 criteria on the list, and all other reasons for these symptoms have been discounted, a Lupus diagnoses can be made.

    It sounds easy but, as you know, it isn't! Many of us have been like you and gone months, or years trying to get a diagnosis. We really are glad that you found us. There are several men in this group which will be helpful to you also. Feel free to post any questions that you have or comment on any thread that you find of interest.

    Making a Lupus Diagnosis
    Last edited by tgal; 03-20-2012 at 11:02 PM.
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  3. #3
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    Default

    hi infidel,
    i am also a male, so you are not alone, even on here.
    i am 50 , so almost your age.

    i went quite a few years with doctors who did not understand.
    nowdays, i am lucky, i have a doctor and a rhuemy who both genuinely care.

    one thing to remember with getting a lupus diagnosis.
    the doctors have to rule out all the other possabilities first.
    this can take quite a few tests.
    and usually quite a few vials of blood.

    i hope you are able to find a doctor who understands.

    also many of us are not officially celiacs, but do benefit greately from reduced grains.
    irritable bowel syndrome (ibs), is very common with lupus.
    anything that helps reduce the irritation, will make a huge difference to us.

    again, welcome to your new cyber family.
    may you become free-er to speak with us.

  4. #4
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    Default

    Nothing like throwing an emotional upheaval into the mix....I found out this morning a dear friend passed away yesterday afternoon...she was 81...yet she would call me every second day to check up on me......geez I am going to miss those calls.
    Does anyone else crave salt...I find I have an insatiable need for salty foods.....could be just because I am not getting flavor from regular diet..actually I should say diets.....migraine diet, celiac diet, and reflux diet..used to live to eat..now eat to live.

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