Autoimmune disorder?

  1. a while back i posted that i may have hypothyroidism...well come to find out this is secondary. my levels are all over the place indicating that my thyroid is not the primary problem. i have had my blood drawn the other day for...

    homocysteine level
    cmp
    esr
    b12
    folate
    fsh
    lh
    rheumatoid factor
    ana
    anti dna
    ft4
    tsh
    total t3
    epstein barr
    cbc
    and... u/a c&s

    my doctor seems to think i have some sort of immunology problem. specifically lupus or rheumatoid arthritis.
    my hair is falling out has been for many months now, good thing it is thick...my joints ache, my shoulder blades go numb, my feet feel like they are going to explode and i get pain in the front of my neck. i am only 29. i have a 1 year old and a 2 year old. could this be something post pregnancy related or it it too long of a time lapse for this. i don't have the butterfly rash charecteristic of lupus but do have water like blisters occassionally on my knees, elbows, scalp & face. usually just 1 or 2 small ones on the face if at all. my cousin has myasthenia gravis pretty severe. so i guess an im disorder could be in the genetics. i have endometriosis which has been linked to immuno problems...i guess i am just reaching here. has anyone a clue what might be going on with me, has anyone ever heard or seen any mix like this?? and lastly if i do have lupus what can i expect??? are there treatments, how bad is it and how do i prevent it from getting any worse??? i of course will talk to my dr about this but i just wanted some first hand knowledge if anyone had any. thanks!!!
    mandy
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  2. 11 Comments

  3. by   wonderbee
    I'm sorry you're having to go through this Mandy. Autoimmune disorders are difficult enough to diagnose by the most accomplished diagnosticians. Undoubtedly, if autoimmune disorder is suspected, your primary care physician will refer you to a rheumatologist. If he or she doesn't, then ask for it. It doesn't sound like anything I'm familiar with. I'm speaking as someone with an undifferentiated autoimmune disorder, not as a nurse or nursing student. These babies present in a myriad of symptoms. Only the blood work will tell the story.

    Hope your feeling better real soon and get some answers.
    Last edit by wonderbee on Jan 16, '05
  4. by   Soleilpie
    Have you been tested for Lyme Disease? Lyme disease mimics a whole host of diseases including both Lupus and Rheumatoid arthritis. Lyme disease can be extremely difficult to test for and diagnose. Do you live in a state where there is a high incident of lyme disease, such as NJ, NY, CT, MD, MA, PA, WI, RI etc. It may be worth looking into.
  5. by   Iamjustme
    Quote from Soleilpie
    Have you been tested for Lyme Disease? Lyme disease mimics a whole host of diseases including both Lupus and Rheumatoid arthritis. Lyme disease can be extremely difficult to test for and diagnose. Do you live in a state where there is a high incident of lyme disease, such as NJ, NY, CT, MD, MA, PA, WI, RI etc. It may be worth looking into.
    How were your lab values? My rheum. still doesn't know for sure whay I have. My HLAb27 was positive so we believe its in that family with the symptoms I have. My rheum. factor negative. Bad pain and stiffness in the mornings, and strange pains (burning at diff. places day to day) Anyone else out there with these type of syptoms? Dx.?
  6. by   Mandarella
    I live in upstate NY Lyme dx could be possible...I will have to get tested. I haven't gotten my results back yet...I was just searching for info & advice. Thanks for your replies, I will keep you posted...and if anyone else has any input I'd love to hear it.Thanks everyone.
  7. by   Chloe'sinNYNow
    Quote from Mandarella
    I live in upstate NY Lyme dx could be possible...I will have to get tested. I haven't gotten my results back yet...I was just searching for info & advice. Thanks for your replies, I will keep you posted...and if anyone else has any input I'd love to hear it.Thanks everyone.
    Hiya Mandy,
    out of curiosity, did you ever receive a Sarcoidosis dx? Or do you have breast implants? I am just now reading about the leaking silicone that brings on all sorts of autoimmune type sx.

    Hope you are feeling better since this post. I found you by searching auto-immune.

    Best,
    Chloe
  8. by   Mandarella
    No implants-I was diagnosed with psoriatic/rheumatoid arthritis. I take it day by day, some I am horribly achy, others are more tolerable. Thanks for the thoughts!
  9. by   Chloe'sinNYNow
    Quote from Mandarella
    No implants-I was diagnosed with psoriatic/rheumatoid arthritis. I take it day by day, some I am horribly achy, others are more tolerable. Thanks for the thoughts!
    so glad you found a conclusive dx. My own labs have returned WNL time and again. But the recent bouts of itching and memory loss and focus, chronic fatigue, IBS, etc. have me seriously scared.

    What other sx do you have?

    Chloe
  10. by   ouizer
    have read where autoimmune problems are usually in 3's. I have hypothyroidism, fibromyalgia and RA. It took almost 10 years for all of these to manifest for definitive results. The only way you can go is day to day. I have good days and then I have days where I feel that I can barely function. One thing for sure is to be sure to attempt to keep your stress under control, I know that is asking a lot, but the more stress you have, the more flair ups you have. Good luck.
  11. by   sweetmagnolia1439
    i'm also sorry u are having to go thru all these problems. i was dx in 2002 with ra , but was tested for everything imaginable. it took about 6 months of pain and suffering before my rheu factor came back positive. i know what u mean about good days and horrible days as i have them as well. in addition to the ra, i have severe osteoarthritis and degenerative spinal dz. my rheumatologist says most of my pain is related to the degenerative spinal dz. i'm covered with huge bone spurs and several vertebrae have deteriorated severely. nothing to do but treat the symptoms at this point. work helps me keep my mind off of all my problems, but the stress of it and physical exertion exacerbates my conditions. so, i'm damned if i do....and also damned if i don't. i have to work...that isn't an option, but some days it sure is almost impossible to just get ready. oh well, you can probably tell....today has not been one of my better days, but hopefully tomorrow will be better. i empathize with you so very much and hope tomorrow is a better day for you as well!!
    hugs.....
  12. by   ouizer
    Understand the frustrationt that you have. I also have DDD and today is one of those days. If I had known that I was still going to be working at my age, I wouldn't have tried riding a bull, diving off cliffs and all the dumb things that I did as a teen. The doctor said that I wore out my body long before I should have. I don't like taking all the meds that the doctors say that I need. I feel that 20 pills a day are just one or two too many. I am trying to do stretching exercises and they help to a point but I don't know if there is anything else I can be doing. If any one knows of anything else that we with problems like this can do, I know that we would all be greatful. Otherwise, I will just keep on going and doing the best that I can. At least I can honestly say that I have never called in sick due to stiffness and pain. My rhematologist said it right, either keep on going or sit and stove up. My vote is still to keep on going. Good luck to all with autoimmune problems. It isn't always easy, but, keep on going as long as possible. I think it will pay off in the long run for our health both mentally and physically.
  13. by   sweetmagnolia1439
    Hi and thanks for sharing with me. I'm sorry today is "one of those days" for you. I too didn't think I"d still have to be working with all of my medical problems, but that's how it is and, I too, have to keep on keepin on.
    Your rheumatologist is right on and so are you. If we sit and do nothing we get to the point where we can't do anything.
    You're right when you said that working helps us both mentally and physically, because I know that MANY days...if it weren't for having to push myself to go to work, I'd just lay or sit around in my pj's all day....hurt more and become depressed.
    I hope tomorrow is a better day for you O and for all of us who suffer from chronic illnesses.
    Hugs to all from a compassionate nurse....

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