Mixed Connective Tissue Disorder or early stages of lupus

Discussion in 'Fibromyalgia Main Forum' started by kalley167, Nov 18, 2005.

  1. kalley167

    kalley167 New Member

    I have been told I am either in the first stage of Lupus or that I have MCTD. I would like to hear from someone who has it just to know what they have experienced. Thanks
    [This Message was Edited on 12/09/2005]
  2. ldbgcoleman

    ldbgcoleman New Member

    From what I understand it is something they call these problems when they can't come up with an answer. I could be wrong. Good Luck and I am prying you have something that can easily be dealt with and not Lupus!! Please take care! Lynn
  3. laura81655

    laura81655 New Member

    I was wondering how they are coming up with Lupus or MCTD?

    I am going to have some different blood tests to see what is also going on. Neurologist thinks that it is more than just Fibro, since it is progressing to other areas.

    One of the blood tests is HLA (Human Leukocyte Antigen), sound familiar to you????

    I hope you get some answers here--

  4. tejanya

    tejanya New Member

    my doc checks the sed rate. it was normal. i had told him another dr had said i had lupus, . go but the tests still show no. that has been over 8 years now. there are other tests also.
  5. kalley167

    kalley167 New Member

    I am not sure which test it was now, it seems your mind shuts down afster you hear somethings. Anyways the MCTD is an overlapping of more than one connective tissue disease. So we may never no which ones to be exact. But she said that one of my tests is specific for these to and it was positive.
    I will try and remember which test it was. Seems my mind doesn't work as well as it used to.
  6. kalley167

    kalley167 New Member

    Hoping for some more info
  7. stinker56

    stinker56 New Member

    Hey Kalley,
    Originally I was diagnosed with MCTD along with FMS. Then I started having trouble with my eyesight. When more tests were done, they found that I have Marfan's Syndrome. It is a connective tissue disease that effects your blood vessels along with your joints. Next I was diagnosed with inflammatory arthritis, no RA showed in the tests. My rheumy said they lump a lot of diseases like these with a common diagnosis of MCTD. Hope this helps. Hang in there. Eventually they will find your problem.
  8. kalley167

    kalley167 New Member

    I felt like I was getting closer to an answer but than this is a confusing one. I wonder if she will ever be able to say yes its this one thing or not. My symptoms are mild at this time and i think that doesn't help a diagnoses but I don't want them to be worse but I want to know also. This has been all so confusing.(I also have FMS)
    And I wish I could get some info on the early stages of Lupus also. Part of me thinks that is what this is.
  9. Remnant

    Remnant New Member

    So far, for me and 3 years of testing in Northern Virginia, (I've ranted a bit here on this) all 5 Dr.s can come up with is Pre Lupus & Fibromyalgia. I have high white blood cells, high ANA's but not all components to get a diagnoses of Lupus, high ESR rate, and pain indicative of arthritis & muscular pain but no arthritis. I was misdiagnosed w/ arthritis 10 years ago.

    I have proof of my pain, but there's simply no name for it and no Dr. (that takes AETNA) cares, longer then the 15 min Im in that office giving my money. Yes Im bitter right now. Im tired of all of this, and no answers and I can't afford to fly to Oregon to see a Dr. that IS educated enough to help me. My attitude is getting really bad.

  10. ephemera

    ephemera New Member

    Hello. For you in Northern VA is there anyone at Johns Hopkin Hospital in Baltimore that would be closer than Oregon, etc.

    just wondering...

    I was outraged when a specialist told me I had symptoms of EDS & hypermobility, but it wasn't enough for me to get a diagnosis. yeah, sure... like I wanted to pay him money just to hear his version of my pain...

    When my shoulder pops out of the socket or my knee goes outside of where it should be i feel it is more disconnective tissue disorder. Phooey!
  11. JLH

    JLH New Member

    I have had systemic lupus for more than 10 years.

    Here is some info on lupus that may be of interest to you:


    Lupus Symptoms List


    Percentage Symptom

    95% Achy joints (arthralgia)
    90% Fever over 100 degrees F (38 degrees C)
    81% Prolonged or extreme fatigue
    90% Arthritis (swollen joints)
    74% Skin Rashes
    71% Anemia
    50% Kidney Involvement
    45% Pain in the chest on deep breathing (pleurisy)
    42% Butterfly-shaped rash across the cheeks and nose
    30% Sun or light sensitivity (photosensitivity)
    27% Hair loss
    17% Raynaud's phenomenon (fingers turning white and/or blue in the cold)
    15% Seizures
    12% Mouth or nose ulcers


    Because many lupus symptoms mimic other illnesses, are sometimes vague and may come and go, lupus can be difficult to diagnose.

    Diagnosis is usually made by a careful review of a person's entire medical history coupled with an analysis of the results obtained in routine laboratory tests and some specialized tests related to immune status.
    Currently, there is no single laboratory test that can determine whether a person has lupus or not.

    To assist the physician in the diagnosis of lupus, the American Rheumatism Association issued a list of 11 symptoms or signs that help distinguish lupus from other diseases (see Table 2). A person should have four or more of these symptoms to suspect lupus. The symptoms do not all have to occur at the same time.

    TABLE 2


    Criterion Definition:

    • Malar Rash
    Rash over the cheeks
    Discoid Rash
    Red raised patches

    • Photosensitivity
    Reaction to sunlight, resulting in the development of or increase in skin rash

    • Oral Ulcers
    Ulcers in the nose or mouth, usually painless

    • Arthritis
    Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)

    • Serositis

    • Pleuritis or pericarditis

    • Renal Disorder
    Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)

    • Neurologic

    • Seizures
    (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects

    • Hematologic
    Hemolytic anemia or leukopenia (white bloodcount below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.

    • Immunologic
    Positive LE prep test, positive anti-DNA test positive anti-Sm test or false positive syphilis test (VDRL).
    Positive test for antinuclear antibodies in the absence of drugs known to induce it.

    Adapted from: Tan, E.M., et. al. The 1982 Revised Criteria for the Classification of SLE. Arth Rheum 25:

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