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Thank you for making this group. I was diagnosed with polydermatomyositis, fibromialya and IBS on Dec 2011. My conditions atracks all type of muscles, the skin and my digestive system. The treatments caused me lost of near and far sight, diabetes, delay memory, trembles, an enlarged liver, kidney stones, unable to write, read and sometimes talk or eat. It took 5 years to get a somewhat effective medical plan. It is mostly comprehend a very strict diet of low histamine, low tiramine, glutten free, lactose free and low sugar. It takes 10 months to be able to see and feel the difference. However, supplemental vitamins are needed as there is not much that a person in this diet could eat. I knew something was wrong for more than a decade before I was finally, by my insistance refered to a rehumatology who diagnosted my in 15 minutes by looking at my chart and biopsy results. I was relief that finally I could put a name on my condition, but there wasn't any well known treatment for these specific deceases. Try an error basically was my treatment. My doctors tried medical treatments used to supress the inmune system. I became allergic to most of them creating serious side effects damaging my internal organs. Anyway, I am better now , I could walk again, go up and down stairs, my skin is beautiful again. I have beautiful hair again. However, my mobility is not the same and sometimes I have a very hard time due to great pain ( btw I'm allergic to pain meds). Because my decease is invisible to others now, I have a hard time explaining why I cannot eat this or that, cannot walk long distances or stand for more than 15 mins or go up the stairs. I cannot do much that would trigger pain as I cannot use any pain meds. I have tried to find people in the same level of movement that will do all those things but at a comfortable level. No luck there. Inmune system disorders are a very isolated invisible conditions.

Basilisa01 4 Apr 9
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Also gluten free, I have cross-reactive Celiac so I can't tolerate soy, oats, corn, rice, coffee...
IBS-C and a Fructose Malabsorption Disorder. I have to eat Paleo/Ketogenic because I have Epilepsy and can't tolerate the AEDs anymore, since my Lupus has started attacking my liver (and I had a lovely attack of Lupus nephritis a few years back that had my docs thinking transplant list for a while). With Ehlers-Danlos Syndrome, Secondary Raynaud's Phenomena, partial agenesis of the corpus callosum, and I had a stroke in the right hemisphere in my brain, probably when I was born. I'm also on the Autism Spectrum.

Not to mention a double c677t mutation of MTHFR, and I'm a carrier for Infantile Tay Sachs and Phenylketonuria. And people keep wondering why I don't have kids! Um, 3 miscarriages from autoimmunity, and now that I'm older and more stuff is going wrong with me, I'm almost grateful I had miscarriages because I would have had severely affected children.

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I have fibromyalgia but am still seeking the root cause. No luck yet. My thoughts are with you.

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