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  • Symptoms since 2007 and still undiagnosed!!

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    Old 01-02-2016, 10:00 PM   #1
    michelleeee
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    Question Symptoms since 2007 and still undiagnosed!!

    Hello, I am scheduled to see a rheumatologist in April but I just really need to hear advice from someone ASAP.

    I am a 22 year old female. Since I started puberty I have been getting a lot of canker sores in my mouth and throat, nausea, and joint pain all over my body. I went to the doctor plenty of times and she kept saying it was "growing pain" and never did any tests on me. After complaining to her for a year she sent me to a pediatrician, who also did no tests on me and concluded every month that he didn't know what was wrong with me. After a year of seeing the pediatrician I just stopped going because it was just pointless.

    The years went by and I just kept getting worse. The joint pain slowly started becoming more localized. So instead of having pain all over, I mostly have pain in my neck, left shoulder, left hip, wrists, and feet. I get headaches on almost a daily basis, I have joint pain every single day, and I get sick very often.

    When I turned about 19 the pain just got worse. My hip gets so bad that I sometimes can't walk on it, and the pain radiates up my back, my groin, and to my knee (but rarely past my knee). My wrists are so bad that I can't even hold a plate full of food without hurting it. If i agitate my wrist even a little bit, I will barely be able to move it for a whole week.

    My doctor did x-rays and found nothing. She took blood tests, and everything (vitamin levels, ANA, rheumatoid factor, kidney function) came back normal.

    I never have a normal bowel movement even though I eat healthy. It is always diarrhea or constipation. I also get really bad pain in my abdomen that lasts anywhere between 15 seconds to 45 minutes, followed by a bowel movement several minutes later. My canker sores have gotten so bad that my throat has scars on it. I brush my teeth twice a day and floss every single day, and still, I have periodontal disease. I get infections in my gums all the time, throat infections, sinus infections, you name it.

    Honestly the list goes on and on. I get frequent pain in my thighs and buttocks, and "shocking" sensations in my thighs.

    The pain is so bad every day that it's been affecting my school and work life. I also lately have been getting very sick when being around a lot of "background noise" (for example at a restaurant or mall, if there is too much noise I feel "drunk", like I am not completely there, and extremely nauseous and dizzy).

    I also get episodes of extreme fatigue, to the point where I am in bed for 12+ hours every day because I am just so tired. (I should point out that I am not sleep deprived, I make sure to get 9 hours of sleep every day).

    A little info about me: I eat healthy (home cooked meals, rarely eat out) with good portions of meat and vegetables, and stay hydrated. I rarely drink, I have never done any sort of drugs or smoked anything of any kind, and I have no STD's. I exercise 3 times a week.

    I also have very dry skin. There is probably more but I just can't think of it right now.

     
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    Old 01-03-2016, 02:52 AM   #2
    VeeJ
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    Re: Symptoms since 2007 and still undiagnosed!!

    Hi & welcome. Hopefully the rheumatologist will re-do ANA, including all relevant "subtypes" for lupus, Sjogren's, MCTD, RA, etc. Also, have your thyroid values been checked? Thyroid symptoms can overlap with those of milder lupus. Also, in your shoes, I'd want GI autoimmunes considered as well (Celiac, Ulcerative Colitis, and Crohn's), because they can co-exist with other AI's and their symptoms can overlap... I believe that ANA will be positive in 95 to 98% of lupus patients, the main exception being people who are positive for ONLY anti-Ro. Curious: do you get skin rashes? Hope to hear more soon. Best wishes.

     
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    Old 01-04-2016, 07:38 AM   #3
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    Re: Symptoms since 2007 and still undiagnosed!!

    It amazes me that you went to two different Drs. for over a year with all these complaints and never got tested for anything. Now that you are older and have had symptoms a decade or so, blood tests are more likely to show something IF the right tests are run. A full battery of tests to rule out lupus and similar autoimmune disorders should be done. You are way too young to feel so awful, and I hope you get some answers soon. Does sun exposure bother you? UV light, in lupus, can bring out rashes and/or systemic symptoms, like the mouth ulcers, joint pains, fatigue, etc. Is there any way you can move your appointment up sooner than April? There are often cancellation spots that open up, and you could perhaps get in to see rheum sooner. I would make a concise list of ALL your symptoms, age they started, etc. to show Dr. If you do get rashes, take a picture of them to show Dr. in case they are gone when you go to appointment. That will document what you are saying. Keeping a concise daily diary of symptoms can also help show frequency and severity. A month calendar on one page works well for that with brief notes like 8+pain, mouth ulcers, knee pain, etc. Good luck and let us know how you do going forward!

     
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    Old 01-07-2016, 08:40 AM   #4
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    Re: Symptoms since 2007 and still undiagnosed!!

    I'm sorry that you've been in pain so long. When you see your Rheumy make sure you tell them everything you've been experiencing, don't leave anything out. Please ask for the Anti-CCP blood test. This was the only way I was diagnosed with RA, the other tests were Neg. Best of luck with your appointment.

     
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    Old 01-07-2016, 04:33 PM   #5
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    Re: Symptoms since 2007 and still undiagnosed!!

    I agree that the anti-CCP test is important, as it turns positive earlier in RA than RA factor (RF) and can be diagnostic earlier, which permits earlier treatment to save your joints. Good luck, and let us know how you get along.

     
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    Old 01-12-2016, 07:10 AM   #6
    michelleeee
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    Re: Symptoms since 2007 and still undiagnosed!!

    Quote:
    Originally Posted by VeeJ View Post
    Hi & welcome. Hopefully the rheumatologist will re-do ANA, including all relevant "subtypes" for lupus, Sjogren's, MCTD, RA, etc. Also, have your thyroid values been checked? Thyroid symptoms can overlap with those of milder lupus. Also, in your shoes, I'd want GI autoimmunes considered as well (Celiac, Ulcerative Colitis, and Crohn's), because they can co-exist with other AI's and their symptoms can overlap... I believe that ANA will be positive in 95 to 98% of lupus patients, the main exception being people who are positive for ONLY anti-Ro. Curious: do you get skin rashes? Hope to hear more soon. Best wishes.

    I have not gotten any tests for my thyroid. my doctor only took tests for ANA, rheumatoid factor and my kidney function. She admitted that she doesn't know what to test for, so she is recommending me to a rheumatologist.

     
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    Old 01-12-2016, 07:17 AM   #7
    michelleeee
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    Re: Symptoms since 2007 and still undiagnosed!!

    Quote:
    Originally Posted by ladybud View Post
    It amazes me that you went to two different Drs. for over a year with all these complaints and never got tested for anything. Now that you are older and have had symptoms a decade or so, blood tests are more likely to show something IF the right tests are run. A full battery of tests to rule out lupus and similar autoimmune disorders should be done. You are way too young to feel so awful, and I hope you get some answers soon. Does sun exposure bother you? UV light, in lupus, can bring out rashes and/or systemic symptoms, like the mouth ulcers, joint pains, fatigue, etc. Is there any way you can move your appointment up sooner than April? There are often cancellation spots that open up, and you could perhaps get in to see rheum sooner. I would make a concise list of ALL your symptoms, age they started, etc. to show Dr. If you do get rashes, take a picture of them to show Dr. in case they are gone when you go to appointment. That will document what you are saying. Keeping a concise daily diary of symptoms can also help show frequency and severity. A month calendar on one page works well for that with brief notes like 8+pain, mouth ulcers, knee pain, etc. Good luck and let us know how you do going forward!

    To be honest I never really thought about exposure to sunlight. I live in Canada so I don't go outside much when it's cold here (I take vitamin D so that I don't become deficient in that during the winter here). I mostly go out in the spring/summer. I will keep an eye out for that.

    Also, the calendar is a great idea. I will start doing that. thanks!

     
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