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Thread: Not sure if my symptoms could be Lupus

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    Default Not sure if my symptoms could be Lupus

    Hi there,
    I’m not sure where to start…I have posted on so many sites trying to figure out what is wrong with me. I am so frustrated and am currently experiencing a bad flare up of whatever it is. I apologize for being so long. Thank you in advance for taking the time to read it.

    For the past 6 years I have had so many things going on with my health. The list includes:

    I had 3 day hospital stay due to bad intestinal problems. A CAT Scan showed inflammation in colon. I was then tested for Krohn’s and it came back negative. Tested for bacterial infection, nothing. I was tested for Celiac, negative as well. My appendix, spleen and gallbladder were in good shape too. My illness was left with no explanation. I had another bout in Vegas about 2 months later and ended up in the ER. Cleared up in about 4 days.

    On another occasion I was tested for a stroke because I experienced a brief ‘blindness’ in my right eye. It didn’t last longer than 1 minute or so and it felt like there was a presence but I couldn’t see it, weird. I was walking down the stairs so I had to sit on a stair for a while. This scared me so I went to my doctor. She tested me for MS and it came back negative. She did the necessary tests to rule out a stroke, all looked good but during an ultrasound test the technician noticed that my thyroid was oddly shaped. She told me I should have it checked out. My thyroid tests had always come back within normal range. My doctor however referred me to her partner who does non traditional testing for thyroid issues and he put me on Armour Thyroid for hypothyroidism.

    Had an x-ray done on my foot because I thought I broke something although I had not fallen or anything. It was a sharp stabbing pain. X-ray showed nothing. Pain gradually subsided. I get this in my knees now occasionally.

    These things came and went but one problem always remains. My hips and thighs hurt like a dull toothache. They are very tender to the touch. I tell my doctor I feel like the tin man. At the onset of this about 6 years ago, she tested me for rheumatoid arthritis and lupus. Both tests came back negative. Recently I had an ultrasound of my lumbar to rule out any pinched nerve. I am in so much pain right now I can barely walk.

    A few other things that have happened within the last year…I had two miscarriages (probably due to my age). Back in April broke out on chest very badly after being in sun. Thought maybe I had some poison ivy left on some summer clothes from a year ago. AND most recently, as if all this wasn’t enough I have been tested for vaginal Herpes several times. Viral cultures and blood work have come back negative every time. Within the last year I have had 3 bad episodes of vaginal lesions. Upon visual inspection I was told right away that it was Herpes, was prescribed Valtrex but that didn’t do anything. I was tested two more times by blood work, negative. I have been with my fiancÚ for two years. He was tested through blood work because he has never had any sort of outbreak and the test came back negative. Unexplained. It clears up on its own after about a week or so.

    This list of things continues and maybe any ONE isolated event could be just some weird thing but ALL these things seem odd. Although they have not said this, I feel like my friends and family are starting to think I am a hyperchondriac. I am so very frustrated.

    Yesterday a specialist whom I was seeing for my chronic hip pain asked if I had been tested for Lupus. I told him yes. He is going to check with my family doc to see when. He thinks I should be tested again. I thought since it was negative a few years ago, then I don’t have it.

    My question is…are there many false negatives with Lupus? While no one wants Lupus I would be at the point of relief being able to explain my ailments and then learn how to cope.

    Any comments would be greatly appreciated and again, I’m sorry this was so long. Thank you for reading.
    Last edited by Freda; 05-26-2011 at 04:40 PM.

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    Hi Freda! First let me welcome you to our family! Your comment about not wanting lupus but wanting an explanation has been voiced by so many of us! Lupus is a very hard to diagnose disease because there is NO test for lupus. There are tests that they do that USUALLY show up in Lupus patients but not in all of them. Lupus is a disease that often gets diagnosed when everything else has been ruled out. There is a sticky in the Newly Diagnosed Section that gives the criteria for diagnosing lupus. I will post a link at the bottom of this page. Too many doctors don't really understand how this disease works and they want the perfect paperwork trail to diagnose and treat it. Many of us suffer for months, years or decades suffering due to their inaction.

    You will hear a lot on this board about being your own advocate and firing your doctors if they are not listening to you. I don't know if you have Lupus or not but I will tell you that AI diseases have to do with inflammation and you know you have that. I think you need to find a doctor that will listen and who understands that there is no real "by the book" with these diseases. There are false negatives in Lupus and they say that 5-10% of people are ANA negative (I think it is higher but that is another story). 6 years is a long time to suffer. I really think it is time to start firing some doctors and find one that will get down to business and help you!

    I am so glad you joined and I look forward to getting to know you!

    http://forum.wehavelupus.com/showthr...upus-Diagnosis
    Mari

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    ~Winston Churchill~







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    Freda (05-26-2011)

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    Hi there,
    Thank you for your post. I am excited to read more on the forum. Thanks for taking the time to read my long post and I look forward to getting to know you and everyone on the forum!
    Freda

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    Hi Freda,
    The human body is SO complex that there is a lot of guesswork in medicine. It sounds like you have had good doctors, who are willing to talk to one another and keep investigating your problems, even when the tests are negative. You are also lucky to have family and friends who are hanging in there with you. Those are major things in your favor!

    I've only been on this forum a few weeks, but it seems like about half of the people here have had a hard time getting diagnosed. There is no single definitive blood test for lupus, although many doctors seem to have skipped that lecture in med school and think that if your ANA is negative, you can't have lupus. There are several places on this site that you can read about the criteria for diagnosing lupus. I understand very well about wanting to be able to explain your ailments. For me the diagnosis was definitely a relief! There is a sticky here on this site that lists a whole bunch of different autoimmune disorders, so even if you don't have lupus, there might be an answer to your search among those.

    Lupus can cause ulcers in the mouth, nose and (less commonly) the genital area. Has your doctor biopsied any of the lesions? That might provide some answers. Have you had any MRI's of your hips or low back? That is assumed to be the best test for hip pain. They can do an arthrogram, where they inject radio opaque dye into the joint itself (along with some long acting anesthetic and steroids) and get a really great view of what is going on. The steroid and anesthetic is diagnostic, too. If you get better for a while afterward, then they know the problem is in the joint capsule. It won't tell you if you have lupus, but it would hopefully give the docs an idea about how to relieve your pain.

    I hope you find the information and support you are looking for here. There are some truly amazing people with a wealth of information and caring to share.

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    steve.b (05-26-2011)

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    Good Evening,
    Yes, my doctors are trying but I am starting to sense their frustration too. The lesions were cultured for HSV1 and HSV2 but no other tests were run. I recently had an MRI of my lumbar but it came back good. No MRI of hips though. The specialist thinks it's bursitis. He gave me shots of cortisone in both hips, prescribed Mobics as anti inflamatory, and gave me a script for physical therapy. I read that cortisone could make things worse before better. I hope I feel better tomorrow. If not, I won't be able to work. I teach high school and am on my feet all day.
    I look forward to reading more. Thanks so much
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    Hi Freda,

    I've read your intro a couple of times, and I honestly don't know what to make of your symptoms. Some are common to autoimmune disorders, and some are not. But, that's the thing with AI disorders like Lupus, there's no typical case, and they can be difficult to diagnose. However, our members have an extensive base of knowledge, so I'm hoping that they can help you find the answers you need. Welcome to our group, and please make yourself at home.

    Rob

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    Quote Originally Posted by Gizmo View Post
    Hi Freda,
    The human body is SO complex that there is a lot of guesswork in medicine. It sounds like you have had good doctors, who are willing to talk to one another and keep investigating your problems, even when the tests are negative. You are also lucky to have family and friends who are hanging in there with you. Those are major things in your favor!

    I've only been on this forum a few weeks, but it seems like about half of the people here have had a hard time getting diagnosed. There is no single definitive blood test for lupus, although many doctors seem to have skipped that lecture in med school and think that if your ANA is negative, you can't have lupus. There are several places on this site that you can read about the criteria for diagnosing lupus. I understand very well about wanting to be able to explain your ailments. For me the diagnosis was definitely a relief! There is a sticky here on this site that lists a whole bunch of different autoimmune disorders, so even if you don't have lupus, there might be an answer to your search among those.

    Lupus can cause ulcers in the mouth, nose and (less commonly) the genital area. Has your doctor biopsied any of the lesions? That might provide some answers. Have you had any MRI's of your hips or low back? That is assumed to be the best test for hip pain. They can do an arthrogram, where they inject radio opaque dye into the joint itself (along with some long acting anesthetic and steroids) and get a really great view of what is going on. The steroid and anesthetic is diagnostic, too. If you get better for a while afterward, then they know the problem is in the joint capsule. It won't tell you if you have lupus, but it would hopefully give the docs an idea about how to relieve your pain.

    I hope you find the information and support you are looking for here. There are some truly amazing people with a wealth of information and caring to share.
    I have to agree with Gizmo about the pain doctor. He does sound very good and I must have read over it a bit too fast and focused on the GP. Any doc that talks to others is good and you should keep them. I still think you need to be a better advocate for yourself with the GP. If he doesn't listen to the other doc then find one that will listen and help you find an answer!

    Gizmo also have you great advice about AI diseases and the other tests. I am so glad she mentioned the steroids! I thought about that after I logged off early. It is one of the reasons that my current doctor became convinced and decided to start me on meds. So all in all I just want to say "So glad you are here Gizmo"! Wonderful advice!
    Mari

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

    ~Winston Churchill~







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    welcome freda.

    i am no doctor, but it is obvoius something is not normal. any doctor that does not see this does not deserve your money.
    you pay to see these people. pay it to someone who will listen and act.

    there is 63 auto immune disorders. it does sound as if you need an expert, not a general care giver.
    can i suggest finding a rhuematologist. they specialise in this area.

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    Hello Freda,

    A lovely warm welcome to WHL and our large family and it's nice to have you aboard, there's so many threads to venture through and get so much knowledge of A1 Dieseases besides Autoimmune Diseases.

    It sound like your going through hell and so many tests and getting no where in the meantime, i strongly suggest you spending your money on a very good Rheumatologist.

    None of we are Doctor's to say what you have but we're all suffers in one way or another, some member's are fully diagnosed and other's still waiting and concerning Lupus in general it can be a waiting process but by what i've read you seem to be carrying strong symptoms linked with Lupus. Lupus in general is a bad Disease for playing with your bloods and making them fluctuate to always get a proper diagnosis straight away, in other words you could be tested for Lupus or any automimmune diseases and you may have it but the bloods can show false reading's, so determination with bloods being done regular is a main factor.

    Your symptoms concerning your hips and joints are all simular to what alot of us suffer and concerning miscarriages lupus can cause this and also stop you from having a child which it's done with me.
    Just to make sure your ok with your skin, when the suns about cover yourself up and sit mainly in the shade if your feel your skin burn or any irritation then go indoors straight away because the heat can cause a flare if you are lupus related.

    It will be lovely getting to know you but do spend your money on a good rheumo.
    Last edited by Peridot20_Gem; 05-27-2011 at 09:07 AM.

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