Desperate for advice

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I've been dealing with joint pain in my fingers/hand, back, knees, hips, feet/toes for the last 3 yrs. I've had tons of the same blood panels done. ANA, CPC, Rh factors etc and everything comes back normal. The past several months my tongue has big red patches and you see where it peeling around the patches; but all the blood work still comes back normal. My Dr is sending me to emory for genetic testing and possibly bone marrow test. Am I missing something or has anyone gone thru this? Its just so discouraging that nothing is showing up even tho the Dr sees all the signs and symptoms and knows something is wrong just dont know what.

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  • Posted

    Hi,

    I think most of us have been there. In y case ONLY ONE test showed something and I did it on my own between the two tests the doctors had ordered. I have always gotten normal results for almost everything. But the symptoms are there and my doctors see them.

    You could be having several conditions at the same time that are connected to your immunity problems. What you are saying about the tongue reminds me of oral candidiasis. Candida is just using the opportunity to (over)grow.

    For candida and your other autoimmune problems I'd watch my diet - no sugar whatsoever, no grains and starchy vegetables, fruit in moderation (because candida feeds on all sugars), dairy, I'd avoid red meat...

    Right now, my AS flare up is still here and I'm having an allergy (and skin breakouts and worse hirsutism) after a prednisone treatment. It probably made a difference, but I still feel pain in my back and my right hand is swollen. Sometimes it just takes time. However, I'll do short liquid fast (water, herbal teas and mostly vegetable juices) to see what happens.

    Good luck!

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  • Posted

    Kelsey,

    Sorry for your infliction and the frustration you share with it. I am no medical professional first and foremost. During these tests have they (doctors) conducted allergy tests? have you noticed certain medications that react either positive or negativity during these symptoms? Were you tested at the height of these symptoms? I have had some terrible flares and during such flares tested positive for ANA. As my flares wane, mostly when medication is used I test negative for ANA. Some of these conditions are hard to find and it is extremely confusing and frustrating to put it mildly. To me it sounds similar to fibromyalgia, but I couldn't begin to know where to start from a medical standpoint. I am also a 3+ year, undiagnosed sufferer of an unknown condition that resulted in many medical offices, many doctors of various kinds with many medical bills and debts as a result, so I not only share your pain but I offer at the very least, that I hope you realize you are not alone, some people go through many, many years until they find the right doctor that uncovers their hidden illness. Your advantage is that the sciences are getting better as well as the technologies to help solve these riddles. Keep hope strong, this will eventually be found out. If you are here, you are desperately reaching for answers like the rest of us, self-diagnosing like the rest of us, Googling everything, finding things that fit, then told no, this isn't what you have. Maybe you feel that the doctors dont fully understand the scope of your infliction and that you are not being taken seriously. This isn't the case and some doctors are so textbook that they simply are not the fit for what you are experiencing. If anything, until you find answers, know you have a community that can empathize. Not an answer, I know, but people are listening.

    v/r

    Adam

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