Hi all, i belong to the lupus site, but joined this one at the same time. I have never contributed here as i think i am in denial. I have lupus, vasculitus, poss RA, sjogrens and many other autoimmune overlaps. A doctor 20 months ago stopped all my meds including steroids. (Long story). In that time my health deteriorated drastically until another Dr stepped in. My probs ran out of control and he sent me for bloods and chest xray. This was all routine and i didnt have a bad chest. My dr called and asked me to repeat xray. Then Gp called me in to say that hospital said i have bronchiectasis. Gp sent me for ct scan to confirm diagnosis. Ct scan said lupus and meds had damaged my lungs. Had to repeat ct laying on my front. Finally saw thoracic consultant who said stop smoking, you have lung prob because of this. I said what about the other so called diagnosis, and he said no all rubbish. He said he doesnt want to see me again. He wrote to my Gp saying he does not believe i am not chesty or wheezy. I had lung function tests which were good. I have quit the cigs so dont attack me. Do you think there is a cover up going on because of the doc who stopped all my meds. I am totally baffled by it all. My lupus does inflame my lungs sometimes as it does to lupus non smokers. Am i in denial and emphysema will strike at some future time, i dont know. Any views will be welcome.
Have i got self induced emphysema or ... - Lung Conditions C...
Have i got self induced emphysema or is it due to my lupus.
The ability to reply to this post has been turned off.
like all of us you are entilted to see your notes i would ask i cant see that they can cover any thing up hun
So sorry 6161 but I am confused are you saying that they are saying you do not have Lupus now?
I too am glad you have stopped smoking
Love Sohara
The doc who stopped my meds said I have nothing wrong at my lupus appt. this doc had the wrong notes and bloods. As I said it is a Long story. When my reg rheumy saw me he sent me for tests including X-ray. When I was told that lupus had attacked my lungs, I wrote a stiff letter to the doc concerned as my iron was also nearly depleted and my liver was inflamed. I just wanted to get it off my chest. I did not threaten any action. The dr from London who diagnosed me in 2005 with lupus, now works at my local hospital and told me that she is having words about it all. She would not commit to saying that this is why I am worse. Since meds have been back in my system all is calming down a bit. It was the way the thoracic dr was with me that has made me a bit paranoid. All confusing and too many docs I know, but I thought I would know if I had a permanent lung condition.
I can fully understand how upset and confused you must be. It kind of sounds like the doctor in question had someone else s notes when he stopped your meds. Hopefully now they will sort out your meds again and you will get the help and support you need from the doctors
The one thing I forgot to say was that one med called methotrexate really made me cough. I took it for 18 months and repeatedly told all docs about this with no response. My phlebotomist listened and told me that patients on that drug are supposed to have lung function tests because of it. When first ct was done thy said my lungs were damaged by the lupus and the methotrexate. So again I have to wonder at it all. Thanks for your interest.
You have the right to see all your medical records. I had to do this due to horrible lung con telling me nothing wrong with me. I refuse to see him now and demand one of his registrars now.
On my GP practice systems the results & letters from hospitals are separated from gp's notes so it took me a while sitting with the practice manager to get all the copies of pneumonias, chronic bronchitis, X-rays etc. I took them to my 1st visit to lovely registrar and she was bowled over & sent me for CT immediately.
Now I take those copies with me in case I get a new doc. For instance when ambulance took me to another hospital that episode is not on the usual hospital records. Nothing seems to be joined up. B....y nightmare.
We have to be proactive to get the best for ourselves (& hence our loved ones).
My notes only cost £10 for the paper & go back 5 years.
I had to write a formal note requesting them. Receptionists were a bit bristley at 1st until I explained it was only to show hospital con because he didn't believe the GP that I was unwell.
Good luck, be assertive (not aggressive) and get what you need.
Docs & cons are only public servants not Demi-gods. Xxx P
Yes I do agree and have done this years ago with lupus probs. after every X-ray and ct, the GP did copy notes and sent to me. So I have all the initial diagnoses in black and white. I don't need anymore conditions to my health, and do hope that all is ok, but if thoracic say I have, why do they not want to see me anymore. Am seeing lupus doc 23rd jan. I will see what she has been told. Thanks for reply.
It's all very odd. I hope you'll ring the BLF on Monday for there expert advice
Xx
Hi 6161, I have heard stories like this so many times. Ring the BLF helpline even if they cannot resolve the problem it's someone to pour it out to, a listening ear that speaks to you. The advice given here is good be assertive, ask for explanations, don't be afraid to ask to see your medical records if you feel this might help. Lastly keep any written diagnosis details you have safe in case they try changing the treatment that seems to work for you. Every best wish to get it sorted
Thanks so much to all good advice. When I was first thought to have bronchiectasis, before ct, I did ring blf and you are right they were lovely. They were concerned about the methotrexate/cough, and said I must tell Drs. I said I would ring with final outcome but I haven't. I haven't even told my husband or children about it. This has been since October and I stopped the med ages ago, so no longer cough. I think I am hiding away on this site because I'm in denial. I believe lungs are damaged through more than just smoking, but people only see that. My family are all smokers, just don't want to give more worry. I have enough probs worrying them with lupus.
Hi 6161 and welcome to the site I'm in a similar situation as you I started to bruise purple in colour and when I bruise I get this rash over my forehead and under my eyes I get pain in every joint like flu and all I want to do is sleep I went to see a specialist he did not know what the problem was then he realised I took steroids and said it was because before I could tell him the bruises started before I took steroids he discharged me.
Yes these Drs think they are on another 'plane'. Don't get me wrong. My lupus consultant is fine, it was the attitude of thoracic Dr. When I repeated the results of tests, that were sent by letter to me, he was shaking his head before I'd even finnished sentence ! I am glad not to be seeing him again as I am glad that my copd can't be that bad. But the point is as you say, are they listening. And in my case are they all covering up for rheumy Dr who stopped all my meds. Hope you get sorted, are you thinking you may have lupus ? Get your GP to do bloods, sometimes the GP is better as they have more time. In the meantime I wish you well
I don't know about another plane some of these Doctors are on another planet I have been tested for lupus it came back ok but I understand it can take ages to get results for lupus and it does not always show in a blood test.
This is very true and even positive tests can be negative sometimes. I was diagnosed in2005 and have only ever had 4 positives.
The ability to reply to this post has been turned off.
Lung Obstruction From Smoking Cessation
Bad cold good advice from Hospital???
I have my results.
I have joined this forum because my Husband has lung disease he was diagnosed some years ago with Pleural Plaques due to asbestos exposure
