What could I have?? Please read and help if you can I’m desperate

Posted , 4 users are following.

my symptoms-

started as a severe headache following this iv had

inflammed heart (pericarditis) which caused effusion

knee pain

elbow pain

hand and finger pain

stomach pain

blurred vision which is now constant



so far all thats been found is a high rheumotoid factor and im waiting to see the rheumotologist , im only 30 and have two small boys and i cant even see properly anymore last year i didnt have any problems. this all began january and i feel alone and its causing severe depression.

0 likes, 6 replies

6 Replies

  • Posted

    Hi .amy

    im so sorry for you sweetie just want to hug you ,it took 10 years to find out my husband had the same thing it kept getting missed you must get your sugar levels checked ,when his flared up his shot straight up to 32 its supposed to be about 5-7 i think he was watching tv and his sight kept getting blurry then got really bad very scary for you. Vasculitis can cause different problems and is inflamatory he stopped having dairy and wheat sugar that type of thing and it helps a lot not 100%but better than he was try for a month get your children in on it to help you if they understand good luck let us know how you get on dont be scared easy to say i know but thats what were here for xx

  • Posted

    thanks for both your replys, i have a rash on my foot, i get burst veins in my throat, burst veins in my hand, really stiff joints, no dry eyes just totally blurred vision.

    i will definatly try no wheat or gluten as normally im very good and never have wheat or gluten as all my brothers have celiac disease so iv always avoided it and i have a dairy allergy i get an itchy throat, acne etc to milk, choc etc.

    i will try to go completly gluten and wheat free.

    just so ill i dont know how im going to go on, if it wasnt for my kids id struggle to fight this, iv lost my job because i just couldnt physically do it anymore, friends because they cant understand why i look fine but im so ill internally and because im young they think well she cant be ill. my life has ended and i had so much living to do. i cant even shower as im so breathless and my joints are in pain, i dont enjoy getting ready as i cant even see my reflection properly its just a blurry mess because my vision is going. i feel like im in a nightmare 😦

  • Posted

    what type of vasculitis do you have? I have Behcet's and had to give up my job too. Was fortunate enough to start a small business and have done that now for 16 years. I am in remission now. Please don't despair. Things can get better with treatment. I am in London but see an amazing specialist in Cambridge who has been just fab. Are you in the UK?

  • Posted

    im in surrey, uk. they are not sure what type of anything i have yet,

    my rheumotoid factor was and is still currently high at 106

    anca positive result and then it was negative following test so we have to re-test that.

    test are confirming an autoimmune disorder we are still truing to find out which one! and the system is so slow!

    do my symptoms sound like your betchets ?

    i think when i know excatly what i have it will help me stay positive and focused its the not knowing 😦

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