nangnoi
10-02-2013, 09:25 PM
:unsure:Hi, My name is Nang-noi I live in Canberra, Australia and was diagnosed with GPA/Wegener's in July 2013.
It started in December 2012 when I lost my voice, I thought nothing of it as I hate seeing a doctor or taking any medicine. After Christmas the symptom was still there so I went to see my GP, he told me to stop talking (as usual - Male GPs always think that women all talk non-stop) for a week or two but still it didn't work. I still lost my voice so I asked to be referred to an Otolaryngologist (ENT).
Within a week of seeing the ENT, I was in hospital to have a polyp removed from the left side of the larynx, the biopsy was clear of cancer but suggested that there's possibility of Wegener's. I had chest Xray and blood test and everything was OK. ENT was happy that my voice came back. I was happy and went overseas for 2 months. During this trip my voice was coming and going and when I came back in May and went to see my ENT again. He told me that the polyp came back again and the only option I had was to take it out again.
So I was back to hospital early June thinking that this time the polyp will be removed. I found out afterwards that ENT only took a sample to do the biopsy on that polyp (but of course charged the full fee for this second operation). One week after I went back to see the result, he told me that he couldn't do anything for me and referred me to see another ENT in Sydney.
In Sydney, the ENT was concerned about the hoarseness of my voice, he was concerned about a progressive form of granulomatosis inflammation so he sent me back to Canberra to see an immunologist. I had lots of CT scans, blood tests, lung lesion biopsy, Mantoux test (as I come from Thailand - I might have a Tuberculosis infection). From these tests, I found out that I have got a non-infectious TB that needs to be treated as well as Wegener's. So the immunologist A had to refer me to an immunologist B at National Capital Medical Specialists as immunologist A has no facility at his hospital to deal with my condition.
Saw immunologist B at National Capital Medical Specialists and found out that the treatment of TB has to begin before he can start on my Wegener's. Getting an appointment to see TB doctor in public hospital is very difficult. I received the positive Mantoux test in August and the appointment is going to be late October and I will see Wegener's doctor in November. Meantime I am suffering from a husky voice and no one can understand me on the phone and I cough a lot.
That's my long introduction and hope that I will have something to say later concerning the medication.
It started in December 2012 when I lost my voice, I thought nothing of it as I hate seeing a doctor or taking any medicine. After Christmas the symptom was still there so I went to see my GP, he told me to stop talking (as usual - Male GPs always think that women all talk non-stop) for a week or two but still it didn't work. I still lost my voice so I asked to be referred to an Otolaryngologist (ENT).
Within a week of seeing the ENT, I was in hospital to have a polyp removed from the left side of the larynx, the biopsy was clear of cancer but suggested that there's possibility of Wegener's. I had chest Xray and blood test and everything was OK. ENT was happy that my voice came back. I was happy and went overseas for 2 months. During this trip my voice was coming and going and when I came back in May and went to see my ENT again. He told me that the polyp came back again and the only option I had was to take it out again.
So I was back to hospital early June thinking that this time the polyp will be removed. I found out afterwards that ENT only took a sample to do the biopsy on that polyp (but of course charged the full fee for this second operation). One week after I went back to see the result, he told me that he couldn't do anything for me and referred me to see another ENT in Sydney.
In Sydney, the ENT was concerned about the hoarseness of my voice, he was concerned about a progressive form of granulomatosis inflammation so he sent me back to Canberra to see an immunologist. I had lots of CT scans, blood tests, lung lesion biopsy, Mantoux test (as I come from Thailand - I might have a Tuberculosis infection). From these tests, I found out that I have got a non-infectious TB that needs to be treated as well as Wegener's. So the immunologist A had to refer me to an immunologist B at National Capital Medical Specialists as immunologist A has no facility at his hospital to deal with my condition.
Saw immunologist B at National Capital Medical Specialists and found out that the treatment of TB has to begin before he can start on my Wegener's. Getting an appointment to see TB doctor in public hospital is very difficult. I received the positive Mantoux test in August and the appointment is going to be late October and I will see Wegener's doctor in November. Meantime I am suffering from a husky voice and no one can understand me on the phone and I cough a lot.
That's my long introduction and hope that I will have something to say later concerning the medication.