Now I'm getting angry

[spiritscript]

PJ

Thank you! When my pitifully small divorce settlement comes, the first thing I'm going to do is get an appt. and take a bus to to a dental university for my denture nightmare!

[spiritscript]

He's nuts! These doctors are terrible these days!

Just had my six monthly tests and appointment with my specialists and I walked out feeling like it's all in my mind.

This idiot doctor tells me all my blood and urine tests are normal and my X-rays show no signs of infection. He asked me who diagnosed me and how was the diagnosis confirmed. All this information is documented in my files and he obviously couldn't be bothered to check.
I said angrily that they did a biopsy on the pseudo tumour behind my eye that was progressively sending me blind.

After nearly 5 years of living hell with this disease and this quack was trying to throw doubt on my diagnosis. What a waste of time.

I complained to him about the infection in my sinus. About the great chunks of green and yellow coloured scab material I have to blow from my nose constantly. His comment was I have no infection and smoking does that.

I told him the night sweats have returned and my eyes are so sore. I asked him if something might be done about my hearing which has noticeably and recently got worse. I told him my taste and smell is gone. He has ignored all this.

I recently tested positive to an FOBT test showing I have blood in my stools. I'm having no luck in getting a colonoscopy. I asked him if he could fast track this as I've read WG can cause bleeding from that area. He said that's rubbish. That WG doesn't cause bleeding from the bowel. Again he did nothing.

In the last week I'm noticing a lump growing rapidly on the side of one nostril. I had this happen when my disease was active.

Im getting to to the point where I'm giving up on the medical system. I think to myself that it's probably better I cut ties with these idiots that I think might think I'm a hypochondriac. Just let the disease go for it and deal with the consequences then.

[PJ2010]

Thought I might throw a positive into this thread. I know I've started a huge response from so many who have had terrible experiences from the medical field but my very recent dealings with a surgeon here in the Ballarat Base Hospital have just proved to me that there are still some knowledgable and caring doctors out there.

I have just recently had my third colonoscopy in as many months to remove some large polyps from my large intestine. Traditionally, the positioning of the last big one normally requires removal by surgury of a large section of the intestine. I was aware that that procedure would have life long effects. There was also a very high risk that it may have been cancerous.

Dr. Timothy Elliott, who has his own rooms in Drummond Street, had studied this special procedure overseas. Upon coming across my case he met with me and went through all the pros and cons with carrying out this procedure.

The colonoscopy was completed with almost no problems. I was kept in hospital for 2 nights due to bleeding. In hospital Dr. Elliott visited me a number of times and for the rest of the week he was in touch often to ensure everything was right.

The nursing staff in the hospital were fantastic. As far as Dr. Elliott goes, I've never met a more caring and professional doctor in my memory. Through his expertise he has saved me a major operation that would have changed my life forever and possibly saved my life. The polyps were benign. I now have some years added to my useful life.

Why can't other doctors be like this? Even someone with a cold needs some care and attention. It makes all the difference when you know someone genuinely cares.

If anyone in medical field is reading this, please make it know that GPA is not just a cold but is a very serious and life changing disease and the poor people that are suffering this terrible affliction need extra care and attention.


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[mishb]

That is awesome news

I'm glad everything worked out.

[MikeG-2012]

Well said! And, I am glad you had this experience!! Positive news is always good news!

Congrats!

[Jaha]

PJ, I'm so glad that you got the treatment and attention that you and everyone of us deserve. Very happy that things turned out alright with the polyps. Congrats and take care of yourself.

[PJ2010]

Thank you all for your support.

Just wondering, I'm supposed to be in remission and taking no meds at all, but I feel so bad nearly all the time.

I wont go to the doctor because I appear to be well and blood pressure etc are normal. I would just be wasting my time.

Most mornings I wake up feeling worn out and my body aches. Many times I feel sick but not in the stomach if you
understand what I mean. I often wonder how I could feel so bad when I'm not sick. After showering I feel able to cope with the day ahead. Throughout the day my eyes become much more sore, my moods become worse, I find my concentration diminishes and I feel fatigue kicking in.

By by the end of the day all I want is to lock myself away in privacy and have my dinner. Very soon after I'm in bed. I'm often in bed by 6.30 pm and fall to sleep like I had passed out. I always wake at least once through the night. Night sweats come and go. As a result, I get out of bed and maybe have a cup of tea or maybe eat something. I stay up for a few hours and then go back to bed and as before, drop into a deep sleep within minutes.

Every day is like this. I know something is wrong with my body because I feel so bad.

I do wonder if anyone else with wegeners feels like this. When I was on meds I did feel like this but much worse. I used to think the meds were the cause but now I can't blame meds. Is this what wegeners feels like when it's not fully active??

Im worried that this is how I'm going to feel for the rest of my life. I've forgotten what normal feels like.

[Pete]

If you're having night sweats and fatigue, you're probably flaring. Are you having any bloodwork done on a regular basis? My doc has me get a CBC, comprehensive metabolic panel, sedimentation rate, C-reactive protein, and urinalysis done every month. These let us know if anything is going on that needs to be treated.

Hope you get to feeling good soon!

[Debbie C]

I agree with Pete, sounds like you are having a flare. You need to check with your doc. before it gets worse.

[drz]

If you're having night sweats and fatigue, you're probably flaring. Are you having any bloodwork done on a regular basis? My doc has me get a CBC, comprehensive metabolic panel, sedimentation rate, C-reactive protein, and urinalysis done every month. These let us know if anything is going on that needs to be treated.

Hope you get to feeling good soon!

My monthly labs are about the same.