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  3. Granulomatosis with Polyangiitis

cant do it anymore

Posted , 2 users are following.

Funk14
Funk14

i have been suffering facial pain esp behind my nose with breathing dificultys for nearly 3 years. also pins needles in hands got so bad i can hardly feel my left hand. been passed around so much saw 2 ent docs last one done a biopsy 6 months ago. the results came back suspected wegners. he then reffered me to a rhumatologist. got my ap for 24th august but i was that stressed over everything i put the wrong date in my diery just csnt believe i done that. they now say i have to get re refferd from my gp that could take a furthre 3 months. i just cant wait another 3 months its got really bad even worse i just cant go on like this

1 like, 4 replies

4 Replies

  • mango15
    mango15 Funk14

    Posted

    Hi Funk14, youneed to go back to you GP and ask them to do an ANCA blood test (this will confirm wegners, if you have it). I was diagnosed with wegners granulamatosis December 2006 after almost 12 months of very different and very random symptoms and came away from the doctors each time feeling like a hypochondriac.....my symptoms started with sinus problems too which seemed to go on forever! Others symptoms I had were joint pain which could be in my feet one day and hands the next and everywhere in between. I developed a cough that lasted about 3 months, nose bleeds, coughing up blood, blood shot eyes, shortness of breath, nose bleeds. My nose also changed shape and i looked like a cross between a druggy and a boxer!!! When i mentioned to my doctor, he thought I was after a free nose job..from january to december I was back and forth and the crunch came when I had lost 2 stone could hardly walk, breath or move when they decided maybe the hospital would be better at looking at me. Best thing ever..my consultant looked at the letter and asked a few questions, took blood and I was diagnosed the following day. With the right medication I had my life back. Please go vack to your GP and demand the ANCA blood test at least you will know. I know how depressing tne symptoms are especially when you feel you arent being taken seriously and want to bangyour head agai st the wall. Sorry I have wafgled on but keep your chin and I hope you get sorted out soon.
    • Funk14
      Funk14 mango15

      Posted

      thanks for the reply. had the bloods done 6 months ago was possative on one and neg on other biopsy on nose said chronic inflamation. they still cant decide in mean time am wasting away. pins needles got so bad can hardly feel hand or foot. they just dont seem to care
    • mango15
      mango15 Funk14

      Posted

      Hi, my nose biopsy also said chronic inflamation which is one of the major symptom of Wegners.... I also had whats called 'saddle nose' when the cartilage collapses, 3 operations so far. Also lost hearing in my right ear. If you are losing weight, that is another big factor of wegners. My consultant checked my blood weekly!for the 1st few months, them monthly for about 12 months. I cant understand why you arent monitored more frequently. Please demand new bloods taken, ANCA being the main one. Sorry you are suffering, but it did take them nearly 12 months to diagnose me.
    • Funk14
      Funk14 mango15

      Posted

      none of them seem to take me seriously . bloods say possotive ancas also. saw a rhumatologist said fibromyalgia. dont know how that can cause nose face pain. its went into my eyes now. im scared of the damage its causing to my body. ive not to see her again till feb. i keep trying to get a tefferal from gp to glasgow with no avail. im going to go back and demand it
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