Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 30

Thread: still no answers

  1. #11
    Join Date
    Apr 2014
    Posts
    26
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    have you had any testing done yet? my symptoms all began following root canal treatment and i think i was sensitive to the materials but this is known to trigger an autoimmune response. i get that a lot too as well as burning feelings in my arms but my ESR is 2 and CRP is normal as well as everything else. it's not rosacea, i just haven't seen a malar rash in that particular blotchy pattern before but with my other symptoms it would make sense although the completely normal bloodwork is confusing. i'm pretty certain i have lupus and i'm sick of being treated like a hypochondriac whilst i wait around in agony too tired to do anything and with such brain fog. i have seen over 20 doctors and a rheumatologist privately then a dermatologist privately but the rash wasn't present. with my bloodwork they said they had 'complete confidence' i don't have anything autoimmune however i know this is the case. my all over body twitching doesn't seem typical of lupus however

  2. #12
    Join Date
    Jul 2014
    Posts
    16
    Thanks
    0
    Thanked 8 Times in 7 Posts

    Default

    I have had some, but not all, bloodwork done. Have you had an ANA and other antibodies done?
    My ana & dsdna were positive. My sed rate was only 3 even though that week my toes and fingers looked like molten hot little sausages from all the swelling. I've been told that sometimes sed rate doesn't show the whole picture with inflammation.

    If a doctor hasn't seen the rash yet then I'd go back while you still have it (or at least, bring a picture)
    With the twitching and peripheral neuropathy has your pcp sent you to a neurologist?
    Keep your head up.

  3. #13
    Join Date
    Apr 2014
    Posts
    26
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    yeah i've had ANA 3 times, ENA, and every other test all negative. Sed rate doesn't seem very reliable for inflammation. I've took a picture each time and they said it doesn't look like the malar rash they usually see in their practice. The rash lasted an hour and vanished. I'm trying my best. thanks for the support. i hope your rheum appointment goes well

  4. #14
    Join Date
    Apr 2014
    Posts
    26
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    i'm just wondering if all over muscle twitching is a symptom people experience?

  5. #15
    Join Date
    Jan 2014
    Posts
    174
    Blog Entries
    1
    Thanks
    26
    Thanked 50 Times in 41 Posts

    Default

    I have never had all over muscle twitching and I have several overlapping conditions -- lupus, sciatica, chronic sinusitis, arthritis (not rheumatoid), high blood pressure, etc.

  6. #16
    Join Date
    Apr 2014
    Posts
    26
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    i literally don't see what this can be except lupus. i have aches and pains fleeting all over my body and i've had the malar rash before. the twitching doesn't seem typical of lupus but maybe it's affected my CNS. i'm exhausted all the time and this morning i've had really bad chest pain. my doctor said they'll re-run tests in a few months as in the early stages they can sometimes be negative. it's so frustrating not having any answers when i already know what the problem is

  7. #17
    Join Date
    Jul 2014
    Posts
    16
    Thanks
    0
    Thanked 8 Times in 7 Posts

    Default

    If you're having bad chest pains that youve never had before I suggest heading to an ER or *AT LEAST* calling your doctor to see what they suggest. Even if its not a medical emergency, get a sick appointment with your doctor TODAY. Best case scenario they can figure out whats causing the chest pain andthat could help lead to your diagnosis.

  8. The Following User Says Thank You to Alicake For This Useful Post:

    Saysusie (08-19-2014)

  9. #18
    Join Date
    Apr 2014
    Posts
    26
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    they;ve settled down now. i'm feeling really suicidal today. i can't keep going on with no answers in this much pain and so tired 24/7. i know it's lupus i'm just waiting around in agony to have it confirmed

  10. #19
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,787
    Blog Entries
    10
    Thanks
    1,640
    Thanked 944 Times in 597 Posts

    Default

    You are truly not doing yourself any good insisting that you have Lupus and stressing out because no one will tell you that it is Lupus. While Lupus is a real possibility, as I mentioned before, it is just as possible that you may be suffering from another auto-immune disorder or from overlapping disorders. What you should be fighting for, at this point, is treatment of your symptoms (regardless of the underlying condition) so that you can have some relief from the pain, etc. You are adding unnecessary stress by insisting upon a diagnosis of Lupus. Stress, as you must know, it one of the deadliest symptoms of this disease because it can cause new and serious symptoms to appear (including damage to your internal organs) and stress can worsen the symptoms that you are already displaying.
    Please, please, try to concentrate on treatment and not so much on diagnosis. There are some of us who NEVER receive a diagnosis, but our symptoms are being treated. This happens more often than you could imagine and over emphasizing the need for a definitive diagnosis is likely to do you more harm than good. Some are diagnosed with Mixed Connective Tissue Disease (where the disease features signs and symptoms of a combination of disorders For this reason, mixed connective tissue disease is sometimes referred to as an overlap disease. In mixed connective tissue disease, the symptoms of the separate diseases usually don't appear all at once. Instead, they tend to occur in sequence over a number of years, which can make diagnosis more complicated).
    Some of us are diagnosed with undifferentiated connective disease (used to describe people who have symptoms and certain lab test results that look like a systemic autoimmune disorder or connective tissue disease. But they don't have enough of such characteristics to meet the diagnosis for a well-defined connective tissue disease, such as rheumatoid arthritis, lupus, or scleroderma. Thus, they seem to have another, similar disorder that doctors call undifferentiated connective tissue disease). So, there are many of us, as I mentioned earlier, who never receive a diagnosis. So, please stop doing yourself harm by insisting upon this particular disease and stressing because you have not been diagnosed with it!!!

    I apologize for being abrupt, but it is important that you take care of yourself and not cause yourself any more harm. At the rate that you are going, I foresee that you will do just that!

    Peace and Blessings
    Namaste
    Saysusie
    Last edited by Saysusie; 08-19-2014 at 10:52 AM.
    Look For The Good and Praise It!

  11. #20
    Join Date
    Apr 2014
    Posts
    26
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    sorry, i appreciate the advice and support. i just don't see what else can cause a malar rash and migratory joint and muscle pains with fatigue. i know people go years looking for answers but it's been 9 months for me and it feels like a lifetime. it's tough to deal with

Posting Permissions

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