Hello scottgirl21,
I would have keep pushing for resolution positively to rule out any doubt that Wegs, does or doesn't exist!
I say this because I had prior issues before my dx.
Leading up to my wegs dx, I had suffered with sinus problems for 2 or more years and it was chronic! I was told that I had sinuitis and had seeked out treatment no more than a couple times and tried to heal myself! I eventually had sinus surgery with minimal relief. This was in Dec. 2009
In late 2010 I was dx with COPD was coughing up blood. A scope found a growth in the airway of my right lung and could not be removed in office like a polyp. I ended up having 2 lobes of right lung removed 2 weeks later! Still no suspician of Wegeners but was told that health problems were expected from a radical cancer surgery in 2006.
They told me the tumor removed with the lung was a hematora tumor, non cancerous. <sp>
In Febuary, 2011 I was hospitalized for pneumonia, Fourteen days in the hospital! In April 2011 I was hospitalized with a rash on my legs and ER Dr said it looked like vasculitis and I had pneumonia symptoms! Thats where my journey took off. They did a kidney biopsy and found it to be wegeners. I began my regiment of standard meds, Cytoxun, Pred, etc.! At a later appointment, I asked the rheumatologist how it is determined if I am in remission or relapsing? He said there are no real standards as far as blood test go, but they can look at some markers such as the white blood cell count being abnormal. He did tell me to watch for symptoms like I had at the start and told me that they could test a random person on the street and they can test positive for ANCA but not have Wegs but would raise a red flag for other problems! Also you can test negetive for ANCA and that person could be afflicted! ANCA one way to watch for remission or relapse!
In other words, I went to him the year before with swollen, sore joints. The swelling went down by the time I got to my appointment date and he could not treat for RA as my family Dr tested a high RA factor and my cancer history prohibited him from treating for RA since the RA treatment involves some cancer drugs and I had my life time limit and had to have special clearance to be treated, Albeit, there was no choice but to treat!
So to sum up, I made complaints over a 5 year period of aches and pains and my oncologist felt it was a result of life saving surgery for my cancer! He apologized as well as other Drs I had seen over the years that they didnt find it sooner and that all my complaints with the total Wegs flare with the purpura, made things fall together like a giant puzzle!
I was also told that insurance companies didnt like to pay for a vasculitis test because there was blood test were simply to unreliable to make the diognosis and a biopsy was the most effective test but was more costly and so they didnt like to pay for the test!
I guess what I would suggest is to keep making the complaints to your Dr! If you have a family Dr, keep them in the know and they can get you into specialist faster than a normal waiting period!
I don't fault the Drs for not finding mine sooner, but I hate that I lost most of my lung and my lungs were shot by this point any way but they had to get the airway opened again. On background, I went from severe stage COPD to very severe stage with in 2 weeks of waiting for the kidney biopsy and the decision on the type of treatment for me as I was a conundrum! BTW, it did get my kidneys and the nephro doesnt know why they are functioning normally but I think its the pred and I know from attempts to taper, the pred is helping my lungs and I cant get below 20 mg and the RA thinks I may never get off of them! Some people dont I guess.
Stay vigilant and good luck!
Its just that I hate taking all these meds and still cant breathe like I want and recenty was told that working was done for me and any exercise should be done by walking as comfortable to me !
Have them tell you definitively that you do not have WEGENERS or vasculitis of any form! Your symptoms are not unlike mine or others I have seen posting on here or other sites!
Your symptoms sound like mine in the start of all of this and when it flared,it escalated fast!
Nobody knows how we got to the top of the hill. But since were on the way down, we might as well enjoy the ride!
James Taylor, Secret Of Life
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