Wegners graulomatosis
Posted , 13 users are following.
Does any have NERVE DAMAGE TO legs & arms fingers ? Unable to walk ????
0 likes, 22 replies
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Notes on Wegners graulomatosis
jan6648 jeanene24804
Posted
Hi jeanene, I have had tingling in my hands & feet for the last 11 years through Wegener's. It is just another symptom to live with. It took me eight and a half years to get a definitive diagnosis and it turned out to be what the original rheumatologist said it could be. Unfortunately I fell through the cracks on always having a negative ANCA test and the biopsies were always taken when I was in remission so were not positive either. Good luck with living with it as it can be done just ignore the tingling. Good luck Jan
wesley60473 jeanene24804
Posted
Had wag for 7 years now but the last year has been tough
khushbu20244 wesley60473
Posted
Hello,I m also a WG patient for last 6 years.I m 26 year old.I too had suffered a lot.initially I had hearing loss,eye swelling coughing and many more symptoms.But I got diagnosed very early.I started with 45 mg steroids n cycles of chemotherapy.In third year I was on 2.5 mg steroids then reoccurrence take place again I had started with 45 mg I lost vision in my right eye completely.I took rituximab then.but vision has gone permanently.now I m on 7.5 mg steroids but it's very painful to deal with this disease.
sarah65055 wesley60473
Posted
Has your rotater cuff ever locked up? You can't put deodorant on nor your clothes. It gets completely numb and it you force your arm up, it justs falls back down. Awful pain. I found Mobic helps with my joint pains. Hope you feel better soon.
kymberly911 jeanene24804
Posted
I have been diagnosed with WG for almost a year; I suffered for over 5 years before they finally found out what was wrong. Kidney failure after a sinus surgery was the key; I have been on many treatments over the past year, came off Pred 8 weeks ago and all my symptoms are back; so I'm about to start all over with my treatments again. But I too have nerve damage, I started to think that all this pain was in my head and hitting my hand, broken blood vessels are just an effect of pred; so I'm not glad to hear that others have this but knowing its not in my head is reassuring! I try and walk as much as I can and I see a chiropractor at least once a week for adjustment, this does seem to help but very sore the day of the adjustment. Hope this helps and please look Wegners Graulomatosis on FaceBook, we have a great group of support there with tons of information. Best of luck!
kymberly911 jeanene24804
Posted
I have nerve damage and have a hard time with my legs, feet and hands. I have testing at the hospital today and then see my rheumy this week. I think I'm in a flare up, but to your questions, sometimes I find it hard to stand up, walk, get out of bed or car, it's painful and hard most days. I'm sorry your experiencing this too, hope you feel much better very soon!
sarah65055 jeanene24804
Posted
My toes are crossed and nerve damaged, but I can still walk. I can't wear normal shoes and I have to be very careful or I fall. I believe that my toes cause me to fall a lot. I also have vertigo very bad.
Do you or anyone else have hot flashes of the head in the early evening? It's not menopause. Sometimes I have one in the daytime but mostly in the early evening. I have to turn the air conditioner on, but it only lasts a few seconds. It feels like the temperature in my head rises all of a sudden.