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Thread: Have Many symptoms but not yet diagnosed. Trying to get my life back

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    Default Have Many symptoms but not yet diagnosed. Trying to get my life back

    Hi, I was looking for a place to just connect with people that may be in the same situation as i am.
    I use to be the type that never went to doctors. Even when i did not feel well i would just let time heal all wounds. Well, about 2 years ago i had to have a physical for school and i explained to the doctor what i had been feeling: extremely tired all the time, weakness, numbness in my right foot that runs from my butt all the way to my toes, nausea all the time but never throw up. So she sent me for a series of test. and one of the test that came back positive was the ANA. well she suggested i go see a rheumatologist. As i fore stated before I am not to the type to go to doctors so i put it off. Well to make a long story short. I had two other ANA test done the second came back negative and the third one came back positive. But when i was tested the Third time they also tested my DSDNA. Which came back positive.
    So i finally went to see a rheumatologist and at first she wanted to put me on medicine but i was hesitant about going on meds and by the end of the conversation she said that she would rather i not put me on it because i am so young. But that she would like to keep a close eye on me. i believe my anticoagulant came back slightly positive as well.

    So i am really confused as to what is going on with me. I use to be very active sports etc. and now i cant even do 2 consecutive pushups without my arms feeling like they are going to fall off. If i play basketball i feel physical exhausted for days. I wake up in the middle of the night all the time and sometimes the pain that is in my elbow is unbearable but its sporadic.

    I just want to know what can i do. I really want to just to be normal again but i feel like its been so long since i've felt normal that i don't even know what normal feels like anymore. I've lost friends because i have no energy to go out and the times when i do go out it takes a few days to recover. I would like to start working out again but anything i do just takes a toll on me. I still push myself but often times i find that its a mistake.

    Has anyone ever gone through anything like this or possibly know what's wrong with me?

    I stopped going to doctors because i feel like they don't know what they are doing. Just test after test with no real answer.

    Thank you in advance for even just taking the time to read my post.


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    hi, and welcome.

    one of the things to remember with the type of testing they are doing.
    many of the auto immune disorders cannot have tests to confirm them.
    the doctors test to eliminate.
    and then diagnose on symptoms.

    so lots of tests is actually a good sign.....
    as they are eliminating lots of problems.

    many of us spend a long time having tests eliminated.....
    so this is normal.
    and very confusing when we are new.

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    wow, i never thought about it like that; That having a lot of test was a good thing to eliminated illnesses. I just figured they didn't know what they were doing.

    Thank You.

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    You should always be skeptical of new meds, but don't be afraid of them. I would probably be a lot worse right now if I had not been put on Plaquenil (a common drug for autoimmune diseases) when I was, and I hadn't even gotten a diagnosis yet. I am also young and it sucks that this has to happen to us when we are just starting to have relationships, work, and form our futures. But it is life, and you have to make the best of it. Make sure you surround yourself with positive, supportive people, participate in as much as you can, and gain a lot of hobbies. As for the blood tests, all I can say is, think of them as something positive. I actually look forward to my blood tests now (which are done at every appt., about every 3 months) because I am eager to see how my results have changed or if a flare or infection is likely... ok that sounds really nerdy, I know, but I find it interesting. With every test you are getting closer to an answer.

    Normal for me is not knowing what to expect each morning. It's not easy, but you have to give your body rest when it needs rest so that you can be as strong as you can be later on in the day. I play lacrosse, and I haven't been able to go for the last three weeks to practice because I have been suffering from a flare. Not fun, but I am able to participate and I have good friends from my team. Don't push yourself, I did that three weeks ago (at lacrosse) and ended up in the hospital. Listen to your body, and take things one day at a time. DO involve yourself in things you truly enjoy, because that will be what takes your mind off of the pain/depression. Anyways, hope this advice helped! It was good for me to write it all out, because I am going through a rough time right now too.

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    Just wanted to say Hello also. I know how you feel with the pain in your arms. However I agree with everyone else you need care. This disease is so hard on your body and without the proper care it gets worse. I live in a very rural area that it is hard to get the care you need without traveling. I sure hope you get to feeling better. Prayers

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    Welcome to our family. You have been given good information about the testing process for auto-immune diseases and, yes, it is a lengthy process and is really a process of elimination. All auto-immune diseases are very difficult to diagnose because they all resemble one another and the diseases change, some symptoms disappear while new ones appear, symptoms worsen or lessen and other auto-immune disease may piggy back off of the underlying one. So, yes, lots of tests are a good thing, it means that your doctors are working diligently to narrow down exactly what you issues may be.
    We are here to help you while you go through this process and hopefully answer some of your questions along the way. Again....welcome

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Welcome and your thread has started like many others here.I also began like you,frustrated as it seemed doctors didnt know what heck they were doing,feeling tired and fatigued and in pain and most of all not listened to!! The trick is to keep going to the doctors and most of all,if you get the 'ignorant' doctor,to learn to get thick skinned at their ignorance,as remeber they are NOT always right! You know your body so keep going to the doctors till one day,like many here,you get that 1 doctor who 'hears' you and before you know it you get the right meds and support to help whatever your illness is.My story started when a rheumatlgist told me i had lupus.Its been a slow uphill struggle since as after that appointment he wrote to my doctor telling him ''apparently this patient wants to be told she has lupus''. I was mortified and to me he was saying i was an hypacondriact...when in fact he told me i had lupus.All the appointments in the months and years after were traumatising as they all treated me like it was all in my head lol.....idiots! Now, 5 years later i know i have been dx with M.E,Srjogrens,Migraine,Asthma,fibromyalgia,ibs and the list goes on. So keep strong...you know your body!!
    love
    Amanda.xxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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