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Thread: Need some help going crazy....

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    Default Need some help going crazy....

    Hi, This is my second time being faced with the possibility of having lupus. I will just tell you alittle about myself kinda quick if thats possible. It started with having several miscarriages that led me to a fertility specialist. They did blood work on me and I had a postive Ana, lupus anticoagulant, and protein c&s. They then sent me to a hemotologist who did all this blood work again and said they all came back neg but the ana again and thinks I have lupus. I was then sent to a rheumatologist who did a alot of blood work and they came back neg and told me he didnt think I had lupus. My fertility doc did make the comment that there is some autoimmune problem going on because my ana is pos alot. I will have to take heparin when and if ever I do conceive. Now to this week I went to see a Neurologist because I have been able to hear my heartbeat in my ear for years now have seen an ENT had mri/mra everything seems fine so just wanted another opinion. I told her about myself and she seemed to think that it sounded like I had lupus to. I also have developed rosacea which she noticed a few years ago, or could it be the lupus rash??? I have no idea. So now she is wanting to refer me to UAB which is a few hours away to get a second opinion on the lupus. Iam also having a eeg done on friday to make sure Iam not having small seizures because I have the brain fog feeling alot and had epilepsy when I was a child. Along with all this I also have insulin resistance, high blood pressure and anemia issues. I have recently lost 50lbs so most of that is better but I honestly dont feel any better and thought I would. I feel like I have the flu or mono all the time. What do u all think? Is it possible for my blood work to be pos, neg and still have lupus? I want to know why I have a positive ANA alot doesnt seem normal to me. I just feel like Iam going to lose it Iam ready to try and get pregnant and now this again I just want an answer.

    Shanna

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    Hi Shannon and welcome to the site.Im sorry you have been through so much already .It could be lupus,but until the doctors tests come back im not 100%.I also have a rash on bridge of nose and cheeks but only slight,worse if i go in the sun and on arms,chest n neck too.I was told i had lupus then got a negative result so im being tested again to find out for sure.Yes you can get a negative result back and still have lupus.Thats why im fighting them to check me again.You have been through so much,but just know many members here will come to support you and help you more than i can.So glad you found us.Hang in there.
    lots of love
    n gentle hugs
    Amanda.xxxxxx
    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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    Thanks Amanda. I have had several test be positive then negative so I dont know what to think. Iam just frusterated and ready for some kind of answer

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    Hi Shannon;
    I, too, am sorry that you are going through so much and cannot seem to get definite answers. All auto-immune diseases are very difficult to diagnose and doctors cannot rely purely upon lab results to confirm or deny a diagnosis.
    If your ANA is positive, but other tests are negative, this does not mean that you do not have Lupus. But, you should know that there are several other diseases that have a positive ANA.
    Testing for Lupus is really a process of elimination. Doctors run tests to determine what diseases are not present. They continue to do this until they are left with only a very few possibilities. Even then, it continues to be a guessing game because the disease changes, mimics other diseases, and symptoms come and go.
    The symptoms you describe could be Lupus, but they could also be due to other auto-immune diseases. The diagnostic process can be stressful and frustrating. We all understand and are here to provide you with support while you are dealing with this. Try not to cause yourself undue distress as it will only aggravate your symptoms.
    We are here to help you as much as we can and we want you to know that you are not alone.

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

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    Hi Shannon and welcome to WHL,

    Oh those wonderful, changing test results are enough to drive a sane person crazy! I too am going through the "you have lupus /you don't have lupus" fight among the doctors. For me, I have simply decided that I am not going to focus on "the name" of what I have/don't have. That drove me crazy. I am simply going to focus on getting better and finding doctors that will help me do that. I am a strong supporter (after wonderful people here said it was OK to want to change doctors) of 2nd and 3rd opinions. Keep changing doctors until you find the ones that LISTEN to you. You know your body and you know what is going on even if the tests keep changing. I have finally found a neurologist that listened and I had a 48 hour eeg and a neuropsych exam over the last few weeks and I am on my way for a new, high def, mri today. I have an appointment with a new rhumy on Friday and I finally feel like I am on the right path.

    As those before me have said I am so sorry that you are going through this. Try not to worry about the changing test results though. That happens to all of us. Simply find doctors that understand this disease and they will be able to tell you if this is what is going on or if it is something else. Until then (and long after) please know that we are here for you

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