Hello. This is my first post since joining. I have only been ill for a few weeks, an illness that seems to have come out of the blue. But maybe not when I look back.
I will outline my problems in the hope that others have experienced a similar story and in the hope that they can give me some support in what to do next.
Ten weeks ago I had what I thought was a simple viral chest infection for a week which seemed to be resolving. However it then got worse with onset of cough, chest tightness, awful wheezing and secretions so off I went to the GP.over the next few weeks I had three lots of antibiotics, inhalers, and steroids without much response and no history of asthma, increasing shortness of breath and ongoing cough and extreme difficulty coughing up secretions. Three trips to A&E resulted in bloods and X-ray which were essentially normal.
Next I managed to get a chest CT scan which ruled out lung cancer and showed some patchy consolidation but nothing conclusive for the docs. GPs still saying probable viral illness.however no real temperature or muscle aches to go along with this.
Out of frustration I arranged a private rheumatology appointment as I had read up about vasculitis and I have a nursing background. I took copies of my investigations with me which were mostly normal except for one blood test showing raised eosinophils when I wasn't on steroids. Sputum tests were also normal for bugs and allergens. I do have a raised IgE result.
I also have a history of small growths in my nose, biopsied fifteen years ago and showing only inflammatory tissue. More recently I've experienced spontaneous nose bleeds, sores in my nose and intermittent runny nose. I also had a month of aching joints and muscle pains last autumn after the flu jab which were unexplained with normal blood tests and explained by a supposed reaction to the flu jab.
The rheumatologist was not convinced I have vasculitis and since I had already booked to see a chest consultant privately ( as this whole thing seems to take so long) he was feeling he would be more help. I saw him five days ago. He stopped my long term antibiotics and wanted me to wean off the steroids ( currently on 25mg a day) which will take about ten weeks. He will see me in two months for review, he's not really sure what's going on but feels steroids maybe masking the picture as all inflammatory markers are normal.
I have real concerns about the length of time this is taking and the possible damage to my lungs. Thankfully my kidney function is good with no blood in my urine on dipstick. I have just ordered some online to continue to monitor it myself.
As an experienced district nurse I feel frustrated that no one is putting the picture together and joining up the dots. Most of the docs and even my family consider me neurotic and impatient. It's a bit of a lonely place right now. I do have a very good GP but his experience is limited in this area and he is bound by the relevant consultants knowledge.
I have reduced the steroids by 5 mg daily since Wednesday and already my chest is tighter and I am coughing more. The fatigue continues and my voice sounds most peculiar. I had another nosebleed this week out of the blue. And the breathlessness continues.
I can't believe I am here. I thought I was fit and healthy, enjoying Scottish country dancing three times a week and an active lifestyle whilst still working part time. Now it's an effort to have a shower!!
I apologise for the length of this post but I am just so frustrated. Do I push to see someone at a centre of excellence or do I just wait until the steroids are weaned and my lung function is obviously deteriorating? Any advice gratefully received. John, I did speak to you on the helpline and would be grateful for your advice if you have time