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Thread: LONG post! Not diagnosed but strong suspicion...

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    Default LONG post! Not diagnosed but strong suspicion...

    that I do have lupus or maybe some other autoimmune disorder. This is all so very confusing and any advise would be great! I am a 35 yr. female if that matters

    I have had an array of vague symptoms for some time now. Below is the the info. that I now take to doctor appts. just so I don't forget anything! I am currently having all the symptoms except for the hives. I have had 2 rounds of the ALL the symptoms listed below. I have had several rounds of all the symptoms minus the hives.

    Here is a list of symptoms as they progress. When this happened last October (2009) they manifested in an almost identical fashion.
    Prior to being sick both times I was happy and healthy and doing fine. I was eating organic meat, some chicken and fish (salmon or cod). I was also eating a lot of vegetables and fruit. By mid summer (2009) I had cut out almost all bread, cereal, pasta- anything with gluten in it thinking that a strange skin rash (on one hand) and stomach pain was caused by a gluten sensitivity and an inability to lose weight.


    These symptoms approx. 3 weeks prior to the onset of hives.
    -Sun sensitivity
    -Severe joint pain through out body mainly at night and a bit in the a.m.
    -Some minor depression
    -Frequent urination especially at night. Some nights can reach up to 15+ times.
    -Mental and some speech confusion
    -Some hair loss

    Then the fun starts:
    -dark, concentrated urine even with an increase of water
    -Anxiety attacks? Low blood pressure with a racing heart. Heart rate is double what is normal for me. Blood pressure systolic is a good 15 points lower and diastolic is only 5-10 points lower.
    -Dizzy spells/almost fainting.
    -Loss of appetite
    -Pain in the abdomen and sometimes back if I do eat even a small meal.
    -Weight loss. 35 lbs in October and about 15 lbs in the last 3 weeks (May).
    -Fatigue
    -Mental confusion

    And then the party!
    -Hives start forming on the back of the head/base of neck.
    -Within a week the hives just take over the whole body.
    -Some additional joint pain will start up again but not as bad.
    -Stomach pain and back pain in the form of painful cramping.
    -Angioedema and hives are severe including tremendous swelling of the eyes, lips, hands and feet. In October I had tongue and throat swelling as well.
    -Extreme fatigue
    -Muscle weakness

    Tests:
    Checked for lymphoma (due to swollen neck lymphs in Oct.) and had a CA-125 test (a large, complex cyst was found during a CT scan). CBC, sed rate, RA and ANA test all done showing low numbers. The sed rate was repeated and the value was even lower than in October. I have had SSA, SSB, DS DNA, C3 and C4 done and all within "acceptable range"- these were done in 2009. I don't think they were repeated since then.
    In December (2009) went to a GI doc and they did a colonoscopy and upper GI. Hiatal hernia and gastritis was found. Biopsies done during colonoscopy found no problems.
    Checked for parasites as well as allergy testing for pretty much everything. GI doc checked for celiac, gluten intolerance and crohn's disease.

    Low grade fevers occur randomly through out illness.
    40 mg of prednisone was given for approx. 3 months before symptoms finally went away. Allegra worked great in October but is only giving me about 12 hrs. relief now.

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    Hello and welcome, I am fairly new here too but as you will find out your story is very similar to alot of others out there I have not been diagnosed either but have many symptoms, also my Ana has come back neg 4 times it was tested lupus can cause false neg's in bloodwork, I am a 42year old male and I think I've had it all my life, but there a lot of great people here to offer support.

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    Hello and welcome to our little part of the world. I am so sorry you are having such a hard time getting diagnosed with your illness. As was said by the one before me we hear (and live) this way too often. The only advice that I can give you is DON'T GIVE UP! Be your best advocate and don't let anyone dismiss you. I can't say if you have Lupus, another AI disease or something completely different but my best guess is that there is something wrong and you need to make sure that you are not ignored.

    Keep a copy of every lab result, get copies of your doctors records (if you have had an MRI or another test you can even get a copy of the pictures). Make a folder and take all of this information with you to every appointment. As I mentioned above you have to be your best advocate. If you can have someone go with you to remember the things that you won't. Just keep fighting to find out what is wrong with you no matter what it is. We will be here for you as you go down this path
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Hi own, wow what time you have had! I'm so sorry. That is a terrible list to look at. Tgal said it all. It took me a long while to put all the pieces together, but it finally happened. I had coffee colored urine once. Boy if you want to wake a doc up, that does it(grin). Don't get too discouraged, by the bloodwork. My ANA's sometimes show and sometimes don't. I am diagnosed with SLE.

    One more thing ...Welcome to the family!

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    Thank you for welcoming me! This has been so frustrating as many of you have experienced yourselves. I do have a family with about 7 MS, crohns (Uncle passed away from it), fibro and even my mother has RA. The doctors all ask the moment they see my list if I have been checked for Lupus and when I say yes and show the results they then say it's stress!? Luckily my primary physician feels that it is more than stress but until a test result says different I am stuck with assuming. It's even more difficult since I have a very physically demanding job and there are days I can hardly function and the boss gets so mad at me. She has no issue making me climb 8 ft ladders when my knees are swelled up or if I am having dizzy spells. Fingers crossed I get this figured out sooner than later!

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    sorry i can not offer any more advice.

    tgal said it nicely.

    but i wanted to say hi anyway

    hi

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    Hi kab,
    Welcome to WHL. I just wanted to add that stress can be the culprit that brings on the symptoms of AI diseases. Many of us here have had this happen. For me, it was the stress of my mother-in-law passing. That was when my symptoms really accelerated, and seven months later the docs started talking about AI diseases.
    There are a lot of them, and many of us have overlapping diseases. As others have told you - be your own advocate and keep asking questions until you find a doc who can answer them.
    Good luck.
    Hugs,
    Marla

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    Welcome! You will receive wonderful advice and support on this site. My diagnosis is new too but the symptoms have been going on for two years. Fortunately I only had to go to two doctors before I found someone who listened to my symptoms and didn't just look at an ANA number. I agree with keeping track of everything. We will be here and look forward to getting to know you better.

    Melanie

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    Default Still no diagnosis

    Finally made it to rheumy so he could see swelling in left hand. Did blood work AGAIN! Later same day right arm started swelling. But began half between wrist and elbow not at a joint, by next day was swollen from wrist to elbow & muscles very sore.Was told blood work came back normal. Last time they said that I asked if dsDNA was still high & was told yes. So I guess they mean normal for me. Dr. talked about palendromic arthritis or lupus. He changed meds from tramadl & naproxen to placqunil & tramadl. Haven't actually made change myself because symtoms come & go & i really don't want to take meds during weeks that I am having no symtoms. Beginning 2 days ago left hand started tingling so I knew swelling was not far behind. This morning you can't see my knuckles. Not much pain but can't use it much because my fingers won't bend very far. Guess I just needed to vent a little. Symtoms so vague & intermittent that sometimes I feel like people will think I am whining if I say anything but I know all of you will understand. Thanks

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    MawMaw,
    Plaquenil is a drug that needs to be taken every single day, not just when you have symptoms. It can take 5 or 6 weeks of taking it consistently before you even notice that it is working, but it really does work.
    Hugs,
    Marla

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