Wegners graulomatosis

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Does any have NERVE DAMAGE TO legs & arms fingers ? Unable to walk ????

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  • Posted

    I had something very similar a few weeks ago. Fibro like pain all over my body, fell when I tried to get out of bed without help, just in terrible pain and totally out of it. My primary gave me neuron tin Bactria and pred. The next morning I thought I had risen from the dead. Immediate response. Went to rheum Ÿ and he told me my wegener,s was totally active again. Went for two cat scans of Luna and sinuses and see him this week for results so he knows how to treat. Don't know if this helps you. Good luck!

    Ginny66

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  • Posted

    Hi Jeanene

    I think that I too have nerve damage to my legs as the sides of my knees both feel that I have grazed them.  Doesn't see to be any more than this at present though.  Have hasd WG for the last 11 years.

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    • Posted

      Hi . Thank You for responding . WOW 11 years that gives me HOPE .... So REALLY how do you feel on a daily basics ??? My nerve damage both legs knees down to feet no feeling . Right arm no feeling elbow to fingers . Very fatigued .... Just feel like crap !! Ian very up beat joking about this Disease... Did have to get Colostomy . Hopefully we can get it reversed down the road ...Iam only 56 years old ..... Thank again
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  • Posted

    Hi Jeanene  I have had WG for 11 years and most of the time I am ok,  Have had a couple of episodes of flare up but due to the fact that it took so long to see a consultant it had mainly gone ny the time I saw him.  Apart from four and a half years of steroids I have had no treatment.  I do get bouts of diarhorea from time to time but they reckon that it has nothing to do with my WG.  I am now 67 and apart from feeling crap some of the time I am ok.  Positive thinking is how I get through.  Keith helps me as much as he can and knows that when I stop eating then we are in for touble.  Because of the steroids I am now also diabetic which has got bad enough to have insulin.  Keep your pecker up things do get better. You don't say where you are from I am in GB. Good luck.
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    • Posted

      Hi . Its great to hear from you I don't feel so alone ... Iam in Spokane Washington. When you say GB is that Great Britain ? Like you I have good day bad days .... In December I had to have a colostomy bag due to the Wegners.. My kidneys one 75% gone other one is okay.... Blood pressure very high on 3 types of meds for that . 18 pills a day . But Iam still alive and kicking. Iam a real fighter " it not over until the fat lady sings " HAVE A WONDERFUL DAY
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  • Posted

    Hi Jeanine

    Yes I have good days and bad days but I take 34 tablets a day plus an injection twice a day for insulin.  They are only treating the symptoms but not the disease.  I only wish that someone would then I could have more good days.  Being as this disease is so rare doctors are wary about treating it even if they have heard of it.  Did you know that only 8.5 people per million get it every year and you can only get it if you are white!!  Keep your pecker up things do get better,  Love Jan

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    • Posted

      WOW did not know that ( only white people ) and 8.5 percent each year . Guess I have no room in whining 32 that's a lot ..... Where are you living? We need to have more research for this Disease and how to treat it . I thank God everyday for my care team which includes my SISTER I would be dead if she didn't step up to the plate.... You take CARE keep in touch ..... Love Jeanene
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    • Posted

      Yes I do have facebook and I live in Great Britain.  I live in Rushden Northamptonshire which is 14 miles from Northampton, Bedford and Kettering.  Would love you to keep in touch.  My name on facebook is Jan Calcutt
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  • Posted

    I've had WG since age 32 I'm 53 now and yes hands, fingers, and feet all suffered nerve damage my hands and fingers especially they are so weak and if I bang my fingers on anything it's like a hammer blow and my fingers bruise real bad, anyway hope you cope ok with this damn disease 

      Yours Faithfully Ian X 

     

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    • Posted

      I just got diagnosed with GPA.  I live in New Orleans.  My worst symptoms are hearing loss and the darn Raynaud's phenomenon,

      The middle finger of my right hand is always purple and painful. Like you said, like a hammerblow when I hit against anything.  I've also developed small ulcers around the corners of three nail beds.  I,m on my first 4-treatment cycle of Rituxan.  Have you ever been on it?  Does anyone know if it helps these symptoms improve?

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  • Posted

    I too have nerve damage in my hands and feet and frequently get broken blood vessels in my hands.  It's good to know that it is a WG symptom.  By the way it is 8.5 people per million not 8.5 per cent!!
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  • Posted

    Hello Jeanene. Just wanted to let everyone know that other ethnic groups can in fact get Wegeners. I am a 36 year old black women and was diagnosed by biopsy last year. However it's more common for Caucasian but other ethnic groups can get it.
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  • Posted

    ...I was diagnosed in March 2016,  left foot numb, toe numb and if I hit anything the pain is really bad, it feels weird, I can barely move my toes, tingiling all the time...don't know if its the disease or the side effects of prednisone, started with 85mg daily now I'm on 5...joint pain (elbows, shoulders, fingers)cameback, headaches, and right ear working at its 30%, hearing really bad...I feel like wearing a helmet all the time, very annoying... I'm tired and sleepy all the time...

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