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Thread: Possible misdiagnosis?

  1. #1
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    Question Possible misdiagnosis?

    I was diagnosed with Post Viral Fatigue Syndrome (also known as CFS or M.E) when I was 14 years old, I'm now 19. However, I'm now starting to wonder if that was a possible misdiagnosis. I became ill with a viral infection when I was 13 and just did not get better. I began feeling tired all the time and sometimes sleeping up to 22 hours a day, but then at other times, I would over sleep and be awake for days. I then got stomach pains that were unbearable, followed by muscle and joint pains. I also developed sore throats and mouth ulcers regularly (I was diagnosed with PFAPA or Marshalls syndrome when I was 15 which was said to cause this), and I couldn't look at direct sunlight - my curtains would always have to be drawn and the slightest bright light would hurt my eyes. I also got a rash across my cheeks quite regularly (and still continue to get these, although they do fade) and I couldn't go into the sun without my skin itching or getting blotches on my skin within five minutes. Some of these symptoms fit in with CFS, but my main symptoms match 100% the symptoms that lupus carriers can develop. I'm just wondering if anyone else thinks it sounds like a mis-diagnoses? At this point I should probably say that my grandmother has lupus, and before I was diagnosed my doctor dismissed testing as he thought I was too young to develop it, however I've seen things online saying that carriers as young as 12 can have lupus symptoms - like the ones I've been having, without actually having lupus but testing positive to an ANA test. It seems very coincidental that I have similar symptoms but a completely different condition.

  2. #2
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    In my opinion you need a second opinion from a new doctor because the one your seeing seems to just want you to fit into these other things when you very well could have lupus especially when your grandma has it. I have been having symptoms since I was even younger than that and was diagnosed when I was 16. It is very common, but in my opinion under diagnosed, in younger people. Its very important to get treatment early because it can prevent bad things from happening in the future. I think it wouldn't be a bad idea to get looked at by a rheumatologist if you havent already and explain to him that you think that this might be what is really going on. Welcome to WHL by the way =)
    Last edited by ritzbit; 09-01-2011 at 03:37 PM.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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    Saysusie (09-02-2011)

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    welcome to we have lupus.

    your origional diagnosis was 5 years ago.
    you have grown Significantly since then.
    so has your medical condition.

    no matter what it is, it is time to re-asses your condition.
    a second opinion is not out of the normal at this point.

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    Saysusie (09-02-2011)

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