long wait on help

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Been passed from pillar to post the past 2 and a half years. The last ear nose throat doc done a biopsy of my nose to say he thinks its wegeners but has to get it confirmed by a rhumatologist. I have to wait yet again for upto 12 weeks. Sick of being in pain scared if its left any longer the meds wont help

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11 Replies

  • Posted

    I attend the Support Group meetings and it will amaze you how much help and information you will get as well as meeting fellow sufferers too.
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    • Posted

      Dont think there is one near where i live would have been good to have someone to talk to
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    • Posted

      You can still join the closed group, read others experiences and contribute your own comments. Give it a try. 😉
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  • Posted

    Sorry to hear this, where are you experiencing pain.  I don't understand this. I had a biopsy on my nose and it didn't take them long to diagnose me, probably a definite diagnosis within 2-3 days that it was Wegener's.  Find out who the best ENT doctor is in your area and tell your family doctor you want to see them.  A biopsy should determine exactly what you have
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    • Posted

      The ear nose and throat doc that done biopsy reffered me to a rhumytologist said they where better dealing with autoimune diseases. My pains mostly in my nose and teeth feels like throats closing had chest pain. Started getting sores on my arms. Been passed from doctors to dentist to 2 ear nose throat specialists even had 2 teeth out. Just want someone to help me
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  • Posted

    I have a very good rhumatologist who prescribed my meds.  I also see my family doctor regularly and I've had a few lung tests done, chest xrays etc.  I'm waiting to get into a new ENT doctor at this time, I also have a very good lung doctor who I see fairly regular.  Yes it is very important that the proper meds are prescribed, but firstly the proper diagnosis.  I hope you get the answers that you need soon; seeing the rhumatologist is a great idea, sure they will help you.  Take care
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