Page 1 of 2 12 LastLast
Results 1 to 10 of 18

Thread: Diagnosing lupus

  1. #1
    Join Date
    Jan 2011
    Location
    Southeast Georgia
    Posts
    3
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default Diagnosing lupus

    Ok, so I have a positive ANA but all my other tests are negative. Does this mean I don't have lupus? What's odd is that I am sun sensitive. I get flare ups of pain in my joints when I am exposed to the sun or fluorescent lights.
    As far as I know, that doesn't happen with other AI diseases. I don't have any of the other symptoms like the mylar rash and organ problems.
    The doc has me on plaquenil which hasn't kicked in yet. Prednisone works but I couldn't handle the side effects. I am trying to take 1 tramadol for pain at night. It's the only thing working right now. I am in a lot of pain with my joints and have a lot of malaise/fatigue. Any thoughts for me? Is this picture very common?

  2. #2
    rob is offline Super Moderator Super ModeratorEmperor of the World
    Join Date
    Feb 2008
    Posts
    3,681
    Thanks
    426
    Thanked 1,105 Times in 628 Posts

    Default

    Hi Jeanneac,

    I was diagnosed with SLE in 2004, and in all the years since, I have never once had the malar rash on my face, nor have I had any of the typical organ involvement problems such as problems with my kidneys. Lupus symptoms are as individual as the person who has them, and there is no such thing as a "typical case" of Lupus.

    Now, I'm no doctor/rheumo, but it does sound to me like you meet the diagnostic criteria for SLE. And, you have taken, or are taking, two of the most common drugs prescribed for the management of SLE.

    To me, your picture is very common, because your symptoms sound like my own. I have extreme sun sensitivity, joint pain, and what I call "lead blanket" fatigue, as well as a bunch of other problems including cognitive dysfunction-AKA brainfog.

    Have you received a definite diagnosis, or are you in diagnostic limbo?

    Rob
    Last edited by rob; 02-03-2011 at 01:23 AM.

  3. #3
    Join Date
    Mar 2009
    Location
    Dallas, Tx
    Posts
    1,859
    Thanks
    145
    Thanked 411 Times in 337 Posts

    Default

    Hi Jeanneac

    I have to agree with Rob, everybody who has Lupus is different, no two people have exactly the same symptoms.
    Like Rob, I have never had the malar rash. My main problems are joint & muscle pain, sun sensitivity ( no rash, but more pain and stomach problems), fatigue and brain fog. I do get mouth and nose sores and other weird things from time to time.
    So you can see, we all have some or all of your symptoms.
    To me it sounds like you do have Lupus, but only a rheumy can diagnose you.

    Wishing you all the best.

    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).

  4. #4
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,741 Times in 1,211 Posts

    Default

    Ditto what everyone else is saying. No two of us are alike so none of our symptoms are alike. It takes 4 of the 11 criteria to meet the requirements of having lupus. Very few of those are blood tests. I hope you have a good rheumy and he/she gets your symptoms calmed down soon
    Mari

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

    ~Winston Churchill~







  5. #5
    Join Date
    Jun 2009
    Location
    Long Island, NY
    Posts
    1,855
    Blog Entries
    3
    Thanks
    172
    Thanked 154 Times in 125 Posts

    Default

    Quote Originally Posted by jeanneac View Post
    Ok, so I have a positive ANA but all my other tests are negative. Does this mean I don't have lupus? What's odd is that I am sun sensitive. I get flare ups of pain in my joints when I am exposed to the sun or fluorescent lights.
    As far as I know, that doesn't happen with other AI diseases. I don't have any of the other symptoms like the mylar rash and organ problems.
    The doc has me on plaquenil which hasn't kicked in yet. Prednisone works but I couldn't handle the side effects. I am trying to take 1 tramadol for pain at night. It's the only thing working right now. I am in a lot of pain with my joints and have a lot of malaise/fatigue. Any thoughts for me? Is this picture very common?
    Although it sounds like Lupus is a possible answer to me (and of course I am not medically trained either) I wanted to answer your other question. Yes - you can have sun sensitivity with other AI diseases but it seems to be less associated with them than with Lupus. It could be that it is just less discussed with other diseases too. Here are two links to discuss this a little further.

    http://www.arthritis.org/sun-and-the-immune-system.php

    http://www.wrongdiagnosis.com/sym/sun_sensitivity.htm
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



  6. #6
    Join Date
    Nov 2010
    Location
    New York
    Posts
    97
    Blog Entries
    3
    Thanks
    45
    Thanked 6 Times in 5 Posts

    Default

    I'm going threw the same thing right now.. plaquenil which hasn't kicked in yet on me either...he put me on Prednisone for a month to see if it works for me, and it did take most of my pain away then he took me off it.. cause he said its not really healthy for you to be on..(it was the only drug that helped me in years so i was upset he took me off it) and i also have tramadol for pain. and it really doesn't seem to work for me... i have joint and muscle pain.my fingers and toes hurt, i get really tired if I'm out in the sun to long.. and i found out i have arthritis and tensities in my right hip , my Ana blood work came out positive and i ended up in the hospital last week and found out i have pericarditis.. and yet my Dr wont diagnose me yet. believe me i don't want lupus but i need to know what i have so maybe i can find something that will help, and to know I'm not going crazy. so i can understand everything your going threw because I'm going threw it right now. i go back to my rheumy next week and he doesn't know i was in the hospital for the pericarditis so maybe this time i can get a diagnose.

  7. #7
    Join Date
    May 2010
    Posts
    980
    Thanks
    57
    Thanked 309 Times in 250 Posts

    Default

    I've been dealing with "symptoms" since 1992. Doc 1: "you've got RA". Doc 2: "you don't have RA, but I don't know what you have". Doc 3: "there's no doubt, you've got RA". Doc 4: "I think you've got lupus", Doc 5: "you can't have lupus, you're a man!" Doc 6: "you have lupus", etc. etc. back and forth. Right now, the hemotologist and the PCP say "SLE". The rheumy says "I don't know, we'll have to do more testing. Come see me in 3 months"... and on it goes... "But, 2 out of 3 doctors say ..." Horses have butts too.
    Last edited by jmail; 02-08-2011 at 09:54 PM. Reason: clarity, my gosh, where's it gone?...

  8. #8
    Join Date
    Jun 2009
    Location
    Long Island, NY
    Posts
    1,855
    Blog Entries
    3
    Thanks
    172
    Thanked 154 Times in 125 Posts

    Default

    Quote Originally Posted by jmail View Post
    I've been dealing with "symptoms" since 1992. Doc 1: "you've got RA". Doc 2: "you don't have RA, but I don't know what you have". Doc 3: "there's no doubt, you've got RA". Doc 4: "I think you've got lupus", Doc 5: "you can't have lupus, you're a man!" Doc 6: "you have lupus", etc. etc. back and forth. Right now, the hemotologist and the PCP say "SLE". The rheumy says "I don't know, we'll have to do more testing. Come see me in 3 months"... and on it goes... "But, 2 out of 3 doctors say ..." Horses have butts too.
    Oh my gosh this was so funny! Thanks for the early morning laugh jmail! Are you sure you aren't seeing my doctors???
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



  9. #9
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,741 Times in 1,211 Posts

    Default

    Quote Originally Posted by jmail View Post
    I've been dealing with "symptoms" since 1992. Doc 1: "you've got RA". Doc 2: "you don't have RA, but I don't know what you have". Doc 3: "there's no doubt, you've got RA". Doc 4: "I think you've got lupus", Doc 5: "you can't have lupus, you're a man!" Doc 6: "you have lupus", etc. etc. back and forth. Right now, the hemotologist and the PCP say "SLE". The rheumy says "I don't know, we'll have to do more testing. Come see me in 3 months"... and on it goes... "But, 2 out of 3 doctors say ..." Horses have butts too.
    LOLOL OMG I needed that this morning! Too funny
    Mari

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

    ~Winston Churchill~







  10. #10
    Join Date
    May 2010
    Posts
    980
    Thanks
    57
    Thanked 309 Times in 250 Posts

    Default

    Quote Originally Posted by SandyR View Post
    Oh my gosh this was so funny! Thanks for the early morning laugh jmail! Are you sure you aren't seeing my doctors???
    Not anymore I'm not... I changed PCP about 4 years ago, rhuemy last year, and I've now got a hematologist. I'm still not sure of the rhuemy, and the blood dude is too new to really form an opinion. But I'll never give up my PCP. She's great.

    Ya know what we need around here? An online medical terms spell checker... lolol

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •