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Thread: Hello! Anyone want to attempt helping me figure this puzzle out?!?!?

  1. #1
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    Mar 2009
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    Default Hello! Anyone want to attempt helping me figure this puzzle out?!?!?

    I am SO glad to have found this board! I had no idea it was out here, but I am sure glad I found it ) I posted this same information on the "Intro' board, and since so much of my post involved 'symptoms', I thought I would post here as well )

    Here goes!

    I am a 40 yr. old female, that has had symptoms since 1996. I've been tested for everything, and essentially all that remains is MS or lupus. I don't quite meet the criteria for either! My questions are as follows:

    1. I have had an ANA as high as 1:1280, which comes and goes. I did get put on Plaquenil several years back and for the most part I feel good, but am having a huge flare right now......could the plaquenil be the cause of my ANA being negative the last few times I've had blood drawn??? Too bad it didn't take the symptoms with it )) I just wondered about the bloodwork. BTW, up to 1/3 of MS patients also have positive ANA's (though I'm trying to find out if they could have one quite that high......from what I've seen so far, I've heard some say they had one as high as 1:640, but so far I have found NOONE who has said theirs has been that high with MS.......and I've tried looking it up in medical journals, too.........I'm desperate!

    2. How can I know whether the pain I am experiencing in my elbows, knees, ankles, jaw, neck is truly joint pain vs. parasthesias? The pain is there at rest and movement, there is no redness or swelling (just a feeling of warmth, though not literally to the touch), and there is nothing in particular that helps with the pain. It is very random. How can I tell if this is true joint pain/arthralgias vs. parasthesias? Obviously depending on the answer, that might give me more of a clue as to what to pursue.

    3. I tested positive for cardiolipids (IGM) ONCE, and that was while pregnant( it was 15). Was this just a fluke because I was pregnant, or does it add any additional insight to solving this awful puzzle?

    4. I get a lot of headaches (back of head) with dizziness, and some muscular pain in my legs. Are any of these typical of lupus?? I know it is for MS.

    Just trying to figure out what I am dealing with (( Don't know if I will ever know, and honestly, don't know which is worse. I just want to get started on the right treatment. I am on plaquenil (have been for about 10 years) and that's works great except doesn't get me out of these flare-ups (and if it is MS that I have, then I definitely need to know because the meds are different for that).

    Thanks for any insight!


  2. #2
    Join Date
    Nov 2007
    Thanked 1 Time in 1 Post


    Hey Sassy,

    Have you had an mri? That is one of the tests for MS...if your doc thinks that might be the problem, then he will set you up for one. Also, have you been to see a neurologist? That is another step in possible dx for ms...understand it is hard to dx Lupus and it is even harder to dx MS.

    Rob might have posted on the other post, but I will say he has both Lupus and MS...he would be the best person to answer your questions.
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

  3. #3
    Join Date
    May 2007
    Thanked 169 Times in 95 Posts


    Hi Sassy...just from my expereince..

    ANA... it can be , thought to be an indicator of how active the disease is. Many of us find our symptoms increase ten-fold while all our blood test return to normal. Not uncommon. So, really it isn't that great of an indicator, as so many of us here are flaring and the tests are in range, or negative...

    Test results, symptoms are so individual...that they usually only fit you. Many here have had positive ANA and flip and have a negative.

    Lupus creates a form of arthralgias. When I was first in pursuit of a diagnose I was diagnosed with arthritis. The drugs, Vioxx didn't help. I had knee pain, toe joint and elbow for the most part. Even went to PT..nothing...

    It was only till I was on Plaquenil I found joint relief, but as of today I believe the Plaquenil has run its course because I had extreme joint pain..had bouts of rashes and hive....and I will look for another regimen with my doctor...

    Even people without a disease can have a positive ANA. The test is just part of the evidence to make a diagnose. Other clinical findings are needed.

    Muscle pain is common with Lupus, with Fibromyalgia...could you have overlapping disease such as SLE and FMS...maybe. SLE and MS.

    Leg pain could be an indication of Restless leg Syndrome. I have that with SLE and also Sjogren's...

    Parasthesias... Does your skin tingle and burn or just pain?

    I get dizziness, headaches, muscle pain in all areas....times my skin tingles like pins and needles and burns and I do not have MS...

    Cardiolipin antibodies...aka cardiolipids are frequently seen with AI such as Lupus... and with other They may also be seen temporarily in patients with acute infections, HIV/AIDs, some cancers, with drug treatments (such as phenytoin, penicillin, and procainamide),....

    Have you been to a neurologist to be tested?

    We have a few family members who have MS..maybe they will be in to share their experience...this is some info I had found...

    National MS Society....
    The Criteria for a Diagnosis of MS

    In order to make a diagnosis of MS, the physician must:

    • Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND
    • Find evidence that the damage occurred at least one month apart AND
    • Rule out all other possible diagnoses

    Most Common Symptoms
    Some symptoms of MS are much more common than others.

    Fatigue is one of the most common symptoms of MS, occurring in about 80% of people. Fatigue can significantly interfere with a person's ability to function at home and at work, and may be the most prominent symptom in a person who otherwise has minimal activity limitations.


    Numbness of the face, body, or extremities (arms and legs) is one of the most common symptoms of MS, and is often the first symptom experienced by those eventually diagnosed as having MS.

    Walking (Gait), Balance, & Coordination Problems

    Problems with gait (difficulty in walking) are among the most common mobility limitations in MS. Gait problems are related to several factors.

    Bladder Dysfunction

    Bladder dysfunction, which occurs in at least 80% of people with MS, usually can be managed quite successfully

    Bowel Dysfunction

    Constipation is a particular concern among people living with MS, as is loss of control of the bowels. Diarrhea and other problems of the stomach and bowels also can occur.

    Vision Problems

    A vision problem is the first symptom of MS for many people. The sudden onset of double vision, poor contrast, eye pain, or heavy blurring is frankly terrifying-and the knowledge that vision may be compromised can make people with MS anxious about the future.

    Dizziness and Vertigo

    Dizziness is a common symptom of MS. People with MS may feel off balance or lightheaded. Much less often, they have the sensation that they or their surroundings are spinning, a condition known as vertigo.

    Sexual Dysfunction

    Sexual problems are often experienced by people with MS, but they are very common in the general population as well. Sexual arousal begins in the central nervous system, as the brain sends messages to the sexual organs along nerves running through the spinal cord. If MS damages these nerve pathways, sexual response—including arousal and orgasm—can be directly affected. Sexual problems also stem from MS symptoms such as fatigue or spasticity, as well as from psychological factors relating to self-esteem and mood changes.


    Pain syndromes are common in MS. In one study, 55% of people with MS had "clinically significant pain" at some time. Almost half were troubled by chronic pain.

    Cognitive Function

    Cognition refers to a range of high-level brain functions, including the ability to learn and remember information: organize, plan, and problem-solve; focus, maintain, and shift attention as necessary; understand and use language; accurately perceive the environment, and perform calculations. Cognitive changes are common in people with MS—approximately 50% of people with MS will develop problems with cognition.

    Emotional Changes

    Emotional changes are very common in MS—as a reaction to the stresses of living with a chronic, unpredictable illness and because of neurologic and immune changes caused by the disease. Bouts of severe depression (which is different from the healthy grieving that needs to occur in the face of losses and changes caused by MS), mood swings, irritability, and episodes of uncontrollable laughing and crying (called pseudobulbar affect) pose significant challenges for people with MS and their family members.


    Depression is common during the course of multiple sclerosis. In fact, studies have suggested that clinical depression, the severest form of depression, is more frequent among people with MS than it is in the general population or in persons with other chronic, disabling conditions.


    Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It is one of the more common symptoms of MS. Spasticity may be as mild as the feeling of tightness of muscles or may be so severe as to produce painful, uncontrollable spasms of extremities, usually of the legs. Spasticity may also produce feelings of pain or tightness in and around joints, and can cause low back pain. Although spasticity can occur in any limb, it is much more common in the legs.

    Less Common Symptoms
    These symptoms also occur in MS, but much less frequently.

    Speech Disorders

    Speech and voice problems occur in approximately 25-40 percent of people with MS, particularly during relapses or periods of extreme fatigue. The problems are of two types—dysarthria refers to changes in the production of speech, including slurring, unclear articulation of words, and difficulty controlling loudness; dysphonia is the term used for changes in voice quality, including hoarseness, breathiness, nasality, poor control of pitch.

    Swallowing Problems

    Swallowing problems—referred to as dysphagia—result from damage to the nerves controlling the many small muscles in the mouth and throat. When dysphagia occurs, food and liquids can pass into the airway and lungs, causing the person to cough and choke. Because particles that remain in the lungs can cause aspiration pneumonia—a serious complication of MS—prompt evaluation and treatment by a speech/language pathologist are essential.


    Although headache is not a common symptom of MS, some reports suggest that people with MS have an increased incidence of certain types of headache.

    Hearing Loss

    Hearing loss is an uncommon symptom of MS. About 6% of people who have MS complain of impaired hearing. In very rare cases, hearing loss has been reported as the first symptom of the disease. Deafness due to MS is exceedingly rare, and most acute episodes of hearing deficit caused by MS tend to improve.

    Seizures, which are the result of abnormal electrical discharges in an injured or scarred area of the brain, are fairly uncommon among people with MS. Their incidence has been estimated at 2% to 5%, compared to the estimated 3% incidence of seizures in the general population.


    Many people with MS experience some degree of tremor, or uncontrollable shaking. It can occur in various parts of the body.

    Respiration / Breathing Problems

    Respiration problems occur in people whose chest muscles have been severely weakened by damage to the nerves that control those muscles. Aspiration pneumonia (resulting from the food particles and/or liquids passing into the lungs) can also make breathing more difficult. Breathing problems, which can contribute to MS-related fatigue and interfere with speech and voice production, should be evaluated and treated by nurses or rehabilitation professionals with expertise in respiratory problems.


    Hope this helps...
    And welcome to the forum..hugs.

    Keep looking for your wellness.
    Last edited by Oluwa; 03-03-2009 at 11:50 AM.
    I have Lupus. So *^#@! what.

  4. #4
    Join Date
    Nov 2007
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    Wow Oluwa...I really think you just wrote a book. lol...
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

  5. #5
    Join Date
    Dec 2008
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    Default hi

    Yes Oluwa.....very interesting reading there.Thank you


  6. #6
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    Mar 2009
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    Default WOW.........THANK YOU ALL.........more

    I never expected such an outpouring of support and valuable information! This is wonderful..............please let me digest it and try to understand. Thanks to each of you who responded.

    BTW, I did have multiple MRIS (when this started wayyyy long ago, and again 3 years ago when I was about 9-10 years into symptoms). MRIs are ALL negative. I had the EVP tests and spinal tap about 3 years into symptoms, and those were negative as well. I just wondered if it was too early into the process to pick up anything (I've read where a lot of people with MS test negative early on). I failed to include that with my info. earlier )

    ANYWAYS - still not sure what to do, but am going to take some time and read what you all have posted. Thank you so very much!


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