sue12
06-10-2008, 07:27 PM
Hi,
I am pleased :) that I have found this site and reading how people are coping with this disease. Because when this disease was first diagnosed we felt so alone and could only get the information from the doctor's and a majority of them dont know enough. My husband was diagnosed in February this year after a long period of time going back and forth to the doctor's (the symptons were over a period of two years jaw ache, general feeling of not being well, tiredness, sore throat, deafness, then severe severe headaches, nose bleeds, In January 2008 - his legs started to swell, elbows and ankles developed sores which eventually lead him being admitted into hospital where he collapsed with pain because he could not walk). Two weeks of medical tests we were told that this disease could kill him which was a big shock as we had never heard of wegener's. Then the hospital checked his kidneys and damage had been done which has now stabilised.
Since February my husband Pete has had breathing problems. Originally he lost his voice. We are at present awaiting to see a consultant regarding the breathing. He gets so breathless but it is not all the time- around about 95% of the time? If someone could reply to me if they have had this problem and what we can do. It would be so helpful. Pete has had x-rays and cat scans which show his lungs are clear? Could it be damage done to the voice box and windpipe? We dont know. Anyone out there been through this please contact me with your experiences and any advice:confused:. Greatly appreciated.
Note: Pete had all the normal (from what I have read) medication which is now changing as all the blood counts are coming back to normal.
Cheers Sue
from Hertfordshire
in the UK
I am pleased :) that I have found this site and reading how people are coping with this disease. Because when this disease was first diagnosed we felt so alone and could only get the information from the doctor's and a majority of them dont know enough. My husband was diagnosed in February this year after a long period of time going back and forth to the doctor's (the symptons were over a period of two years jaw ache, general feeling of not being well, tiredness, sore throat, deafness, then severe severe headaches, nose bleeds, In January 2008 - his legs started to swell, elbows and ankles developed sores which eventually lead him being admitted into hospital where he collapsed with pain because he could not walk). Two weeks of medical tests we were told that this disease could kill him which was a big shock as we had never heard of wegener's. Then the hospital checked his kidneys and damage had been done which has now stabilised.
Since February my husband Pete has had breathing problems. Originally he lost his voice. We are at present awaiting to see a consultant regarding the breathing. He gets so breathless but it is not all the time- around about 95% of the time? If someone could reply to me if they have had this problem and what we can do. It would be so helpful. Pete has had x-rays and cat scans which show his lungs are clear? Could it be damage done to the voice box and windpipe? We dont know. Anyone out there been through this please contact me with your experiences and any advice:confused:. Greatly appreciated.
Note: Pete had all the normal (from what I have read) medication which is now changing as all the blood counts are coming back to normal.
Cheers Sue
from Hertfordshire
in the UK