I have no idea what this is

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In Oct 2016 my life changed I went into the e.r with pain in my pelvic area to where I couldn't stand up straight. They said it was a ruptured cyst the next day I began to uncontrollably vomit and was extremely nauseated for months. I started having panic attacks, anxiety. No medicine worked. I had upper abdominal bloating and pressure. I went to the e.r again and they said gastroparisis and prescribed all these pills which made me sicker and in pain so I stopped after a few days. I had atrial tachycardia and my heart rate stayed at 170 for two days, they said this was due to dehydration although I am constantly drinking water. Then I was stretching and I had entire left side body numbness and I felt away from my brain. I went to the e.r again nothing. Now i cant work out because my thighs will go numb. I now get painful legs to the point I can't walk usually its when I get my period or a week before. My back to my feet hurt really bad. My legs are tired and painful, I can either not poop or have diarrhea. All my tests are fine but I'm deficient in copper and have to much b6 which I'm told is fine. I have also developed a weird thing in my hands and feet where they swell and get painfully itchy and red. Which I'm told is fine but its weird how symmetrical it is too my feet.for example if its my right thumb and index its my right foot same toes. I have lost 30 pounds and can not gain it back no matter what I eat. I always feel dehydrated, and my pee will be a yellow green. but like i said i am constanly drinking water. I am hypersensitive to gluten now which I cut out. And I can't take medicine because I'll get sick I think I'm processing it too quickly. My immune system is also shot. Periods are unpredictable. I have recently developed these weird shocks over my heart/ ribcage its in the same spot and pinpoint. Its really painful i cant move for a few seconds when it happens, im told this is fine. My blood pressure always changes either too high or really low. i get hot flashes and flushing. I bruise easily probably from weight loss. I wake up extremley tired. I have alot of fatigue and can no longer stay up late although i have trouble sleeping and staying asleep. I have chronic off balance and dizziness as well as ear pain And headaches. I know this isn't for doctors I just want opinions and other peoples experiences. I have had catscans of my organs and brains. I have had many different blood test for vitamins and minerals as well as function test for certain organs. I am 20 years old 5'5 and now slightly underweight at 111. my only prior health problems were chronic migraines which stopped when I stopped doing p.e in the sun. I have never had a autoimmune test I dont even know what to ask for. Or if I should ask. I had a ron of theories. But these new symptoms have me boogled. I guess I just would like too know with wide ranged symptoms like this has anyone experienced anything similar? I also apologize my info is everywhere I have pages and pages of symptoms I'm experiencing. Thanks for any info/suggestions.

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  • Posted

    Sorry for what you have been going through. 

    I am not sure which country your at, but it seems the doctors are not helpful at all, or they are not very knowledgeable with your conditions. 

    you should definitely ask for tests for infections and autoimmune disorders. 

    Do you have rash, joint pain, abdominal pain

    Yellow green pee.... i have never heard .... what did the doctor make of this? 

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  • Posted

    AAARgh just wrote a big reply and managed to lose it!! 

    To recap this sounds like my life story. Experienced all of the issues you speak of. I am diagnosed with auto immune disease/vasculitis. 

    Very complicated area and difficult to get a dx and even when you do treatment is patchy. But I suspect you have been seeing wrong type of docs. 

    I was all the round the houses and have seen ent, neuro, endocrinologist you name it. Finally diagnosed in my 40's by an immunologist and currently in the care of a specialist in vasculitis who is great and after long treatment am in remission. Life was absolutely miserable for most of my late 30s early 40s. 

    Not sure where you are based...if you let us know where in the world you are we can make some suggestions about who to see how to get diagnosed. It's a struggle with auto immune disease but there is help out there if you find a specialist who deals with it. 

    YOu need to have blood tests which look at esr crp and ana. Not done as standard and even if they are a gp won't often sadly understand the implications of the results. Better off seeing a rheumatologist or an immunologist. 

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    • Posted

      What do you mean by standard ANA?  I had 2 ANA test.. one was using Athena beads. The Athena Bead test has different colored beads, each one coated with different ANA subsets: SSA, SSB, Sm, RNP, Scl-70, Jo-1, Centromere B, dsDNA, and Histone. The test is positive if any of the subsets are over 100.  It came up positive.  Then my second ANA was the Elisa ANA, which came up negative.  I found this information.....  Dr. Goldman reviewed the literature and determined that Athena Beads and ELISA ANA testing are somewhat comparable, but neither is as reliable as IFA.    So.. I'm really confused on which test is right?  Or should I get the IFA test also?  Which one is the standard?

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  • Posted

      I'm sorry for you , it must be awful to have so many symptoms.  I hope you find a good Doctor soon.

    Catharine.

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  • Posted

    Did your doctor prescribe you any anti-depressants? ssri's etc?

    Your chronic symptoms sound eerily similar to mine.

    Have you had any scans or CT's of your pelvic/abdominal area? So much can get overlooked by only doing blood tests.

    I was diagnosed with IRPF (idiopathic retroperitoneal fibrosis) which was a secondary response to IGg4 Auto-immune disease. Subsequent acute renal failure resulting in atrophied kidneys with 10% function in left and 80% in right. Also resulted in a 7.5cm long DVT in my Inferior Vena Cava, die to pressure from the fibrous mass.

    I have a great immunologist who is keeping me alive so far, but I have just come OUT of remission which is a little weird, so back to the drawing board.

    Just go slow and get 1 thing out of the way at a time I guess. That's what I had to do.

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