• over 1 year ago

    Feel like dying slowly

    I've been tested ANA positive since 2013. Yet not a single doctor (seen 3) since then does anything about it nor cares... ANA positive? Ok great, bye!
    My condition has deteriorated greatly! Now I get unexplained attacks that we almost have to go to ER (the only thing that's stopping us is the ER bill).
    My first time I tested ANA positive : 1:320. No treatment was given.
    Now I've tested ANA positive (since 2013 - 2017 always ANA positive) 1:160. My current doctor told me : "No rheumatologist would want to see you with 1:180. It's too low for lupus". I asked her to give me a referral anyway. I am like my own doctor!
    Recently had many blood tests done for C3 and C4 components. : My C4 level is 7661 (normal range 0-2830ng/ml) My doctor told me "you have very high C4, you suffer from mold toxicity). Ok... I do not work nor live anywhere where's mold! Besides if my home had any mold, my other family members would've been sick! But I am the ONLY ONE who's sick and getting sicker by the day! My C3 is elevated as well but slightly. Do patients with lupus have high levels of C3/C4 or patients with lupus have lower numbers generally for C3 and C4 components?
    I feel like I am helpless. Nobody cares no wants to help me. I don't know anymore what doctor to see. Nowadays I feel when my face is getting swollen, my neck and my lymph nodes on my neck. Please help to clarify what high concentration of C4 could mean? Thank you.

Responses

  • over 1 year ago

    RE: Feel like dying slowly

    So to help you out , I have had lupus for over 25 years, my mom has lupus , and my youngest daughter has lupus. I know more about this monster than most Dr.s . But please get professional help with this. I am going to say first of all there are several catagories that they go by in order to diagnose lupus , the ANA is only one as is Rheumatoid factor. In rare casss you can be negative and still have lupus. For most of the last 17 years I have been in remission, which basically means I am not sick enough for rheumatologist to waste his time. So every time I have ever had even a mild flare they say I am a new patient again. This is ever so frustrating as you are finding out. Dr.s that start testing for mold, and valley fever, Lyme disease right off the bat usually sell a huge amount of supplements in their office. I work in the medical field and I don't trust them and neither do most the Dr I know and that it quite a few. Getting that out of the way you need to list your symptoms . Then look up lupus symptoms . If you look like you have lupus st that point you need a new Dr or make sure they see your list, I suggest a diary . I have been in a spiraling down hill flare for about a year. I realize now it started before I realized because I kept having lymph nodes swelling on my head and neck .. and other pain I blamed on she and other iѕѕυєѕ. For the last year I went from running around playing with my grandkids to being mostly bedridden from pain, severe , pleurisy , pneumonitis, memory issues. I can no longer do chores, bathing us excruciating . My point her is you may have lupus and you just can not except no for an answer . My primary care now takes care of all my care as she is frustrated that my rheumatologist was going to make me start over again. I don't think that's fair for anyone , I take prednisone, plaqunil, methotrexate, pain meds lots , and am finally starting to feel better. I know there are new better meds but insurance does require you to fail or not tolerate these medications first, as the new meds are about 10,000 a infusion. Don't give up fight for your right for good medical care. Get another opinion than your current primary. They should at least try some steroids to see if it helps. Although you didn't really share much of your symptoms I'm sure they are more than swollen glands. Good luck and don't give up
      • over 1 year ago
        : hello I agree with alot of what you said I've had Lupus for 32 yrs but thank god I've had 2 good internal medicine drs & a good Rheumatologist.
      • over 1 year ago
        : I know it is so difficult , I am on list for a rheumatologist so that I may try rutuximab . My grandson gets it for his auto immune pandas. It works well and side effects just a few days. I try to educate people since an ANA test is only a screen, nit the diagnosis. Positive ANA with out symptoms mean nothing. My self you read the criteria for lupus I am 10:11.