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Hi Marcy
I had a CT scan when I was admitted into hospital in June prior to my tracheotomy, and my lungs were OK. As I understand it when I have the reconstructive work done, I will need to have a...

Hi Rcossio
Thank you for that info, when I spoke about it to my rheumatologist he would look at me blankly as if I was the only one who suffered it! I have an appointment at the end of September...

Hi Marcy
Sorry Ive taken so long to answer you. I was diagnosed with WG 2 years ago. I live in Featherston, Wairarapa, NZ. At the moment I am on 15MG predisone daily and 12.5 MG Methotrexate weekly...

Hi Andrew
I havent been on site for a while, hope things are better for you. Like you I was running our of air and went on like this for a year, the last couple of months were the worse. ...

Hi Marcy
Oh how I can relate to how you are feeling. I have been so eager to hear someones full success story about how they could hardly breath but after a certain amount of time things improved...

Hi Carol
I have suffered the same feet problems as you. Unfortunatley I had 6 months IV cyclophospamide and that was when my feet problems began. Cant say whether it was the cyclo or just wegeys...

Hi Lucy
Welcome. Your mum is a really lucky lady to have you at her side as she will need all the support you and family and friends can give her at this time. One piece of advice is for her to...

Hi Andrew
Yes I still have it in and will need to have it for approx a year. They are saying they need to get me into remission and then wait a while after that before they would be able to operate...

Hi Terri
I have just got out of hospital. My breathing was so bad I couldnt handle it any more so made a visit with my Dr who sent me straight to Wellington Hospital to see my ENT Specialist. It...

Hi Patricia
Thanks for sharing your story. It is nearly a replay of my wegeners. I also find the hardest part is the shortness of breath. I am reading a book the EAT RIGHT DIET by Dr Peter D'Adamo...

Hi Terri
Like you I find I cry a lot about my predicament, mostly in private, but sometimes when people ask me how Im doing and start asking too many questions I find I break down and cry. Its...

Hi Gwenllian
Unfortunately I think it is probably a symptom of WG. I have had breathlessness for about a year now and it has got to the point where I can really do nothing but sit around. I still...

Hi Andrew
I have inserted a file of my story but not sure if it has worked or not as I havent done this before. I used the attach icon into my doucments but when I preview the post it comes up with...