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Thread: I'm confused!

  1. #1
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    Default I'm confused!

    I have been seeing a good doctor for almost a year now. He has been helping me with my 12 years of bad health. He told me a few months ago that it looks like I have low grade lupus, I have a positive ANA, low white cell count, low calcium , zinc and HEAPS of symptoms that I won't bother typing out. Also I have autoimmune conditions in the family. He said it's nothing to worry about and instead is treating my multiple food allergies, candida and leaky gut.

    I didn't know anything about lupus so I read a bit, it does fit EVERY symptom I have ever had, even the tiny ones that I have never thought much about. I don't want to have lupus, but it just all makes sense, if you know what I mean.

    What I am confused about is shouldn't this be taken further, shouldn't this so called low grade lupus be investigated to prevent it becoming full on lupus? I have asked my doctor on 2 separate occasions and he just says he's not concerned.

    I feel that maybe if I get some treatment my immune system might work a bit better. Maybe my allergies won't be so bad and maybe I won't catch EVERY SINGLE cold, flu or virus that comes anywhere near me, and if I do it won't take me 2 or 3 weeks to get over it.

    Also for the last 3 or 4 days I have been terribly dizzy, tired, I walk into things and feel sick. I have been really forgetful and spacey. Has anyone experienced this, I see my doctor next week again, so I will tell him.

    Sorry for the novel, thanks

  2. #2
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    Default hi

    Welcome and hello hmn,

    Yes i experience the same.Next week ask this question to your doctor.Many more members will post here to help you more.But the doctor will or should put you on meds to help you with your symptoms.Thinking of you.Let me know how you get on.Sorry this is short but others will be here soon.

    lots of 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

  3. #3
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    Default

    I'd definitely get a second opinion.

  4. #4
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Default

    Hi HMN,

    I'm Rob, and I was diagnosed with Systemic Lupus in 2004. I am not aware of any actual medical term called "low grade lupus". I would seek a second opinion. And I would not accept an answer like "don't worry about it" either. Lupus must be properly managed, and there are meds, and lifestyle changes involved in it's management.

    With proper treatment Lupus can be something that you don't need to constantly worry about, but it's not something to ignore. I would suggest you seek out a Rhemotologist for your second opinion, and if the diagnosis is confirmed, the Rheumo is the proper specialist to help you manage and treat the disease.

    Rob

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    Default

    Hi hmn,
    Welcome to WHL. If you read through some of the threads on here, you'll discover that many of us have been through the same thing. I had one rheumy who wouldn't treat me because my blood work didn't register "high enough". The next one said that I did register "mildly positive" for several AI disorders, so she called it Mixed Connective Tissue Disease and started treating me. The meds have helped, so I'm very grateful to her.
    As Rob said, go get another opinion from a rheumotologist, and if you don't like that one, try another one until you find one that you can work with.
    Hugs,
    Marla

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    Smile

    hi hmn i agree with everyone tell your doctor your concerns and if he still is not taking you seriously get another opinion rob is right rheumi is the best if you can write down all the symptoms you have and all your concerns so when you see doctor you can discuss it with him do not let him fob you off we have all had problems with doctors with this disease fobbing us off if you believe something is wrong then trust your instincts after all it is your body . take care and good luck and have merry christmas hugs kim l

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    Default

    Hmn,
    I have no diagnosis of anything, but Lupus and/or ANY other autoimmune disease fits the bill! I recently had an ANA test come back positive but when they did further testing, it came back negative. Does anyone know if it is possible to still have Lupus, or another autoimmune disease with test results like this? I see that everyone is going to a rheumy doc. I think that when my family doctor calls back tomorrow that I will demand to see one. I just don't feel like the test results should be the deciding factor of whether or not I have something going on. I have posted in the autoimmune forum, in hopes of finding some answers or suggestions on what to do next.

    So far, I am having my seasonal allergies "controlled" aka... I am on allegra and omnaris which doesn't seem to control much at all, I just have less side effects from the drugs. Then again,none of the other 15 drugs they had me try worked either... I also have anaphylactic reaction to ALL antibiotics... go figure. For the achy pain all over my body, I just keep popping three tylenol when needed. For the multiple colds and infections, I try to stick with the natural remedies like drinking refresh tea from Starbucks, going to the chiropractor for sinus treatment and upping my vitamin C.

    For the rest of my story, you can go to the forums, it is listed under the autoimmune link I believe...

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    Default

    Hi hmn...I'm also thinking a second opinion would be a good idea. If there is anything autoimmune going on it needs to be controlled.

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