Doctors can sometimes be really annoying
November 12, 2012 § 4 Comments
I went to see a pulmonary specialist the other day to try and get to the bottom of my chest problems. I came away from that appointment, angry and insulted and let down.
I’ve have had a cough and chest problem since April, which if you’ve been reading my progress you’ll know coincided with all of the muscle involvement. Dermatomyositis can have lung involvement and can cause interstitial lung disease (ILD) which is a very nasty condition and basically, you do not want to get that.
In the early stages of my diagnosis (early June this year) I had a full body CT scan and chest x-ray and various pulmonary function tests and the conclusion after looking at the results of all these tests, was that I must have asthma and I may well have had all my life, but had never been diagnosed (just as an aside, Ive never had any inkling that I had any asthma like symptoms prior to getting this disease).
When I was told this, it was about a month after starting treatment for Dermatomyositis, which includes taking high dose corticosteroids, namely prednisolone. So the doctor said, let’s leave it a few months, as this is the treatment we would give you for asthma anyway, so it should clear it up. Great I thought, kill two birds with one stone and brilliant it’s asthma rather than ILD.
So here we are 4 months later and a hell of a lot of corticosteroids ingested. My chest problems remain. I have good and bad days. My worst days cause me pain on breathing and very shallow, tight breaths and a constant dry cough: It’s just as bad sitting as when I’m moving about. Good days, I have a bit of a cough still and a slight tight chest.
I presented the above to the consultant: A different one to the one I saw initially. He was very young, should that make a difference, maybe? I asked him why, after being on high dose steroids since June, did I still have asthma symptoms? He couldn’t answer that. I asked, could it be muscle involvement, after all, I have a disease that wastes muscle tissue? He said he didn’t see any reason to believe that, as the pulmonary function tests didn’t show muscle involvement.
He then said he needed to consult another doctor and would I mind waiting. He went off and was away a little while. When he came back he said that the only explanation for the continued asthma symptoms was that I was too overweight and I need to cut down on food as I must be overeating.
Ok…well I have put on weight since being on steroids, but seriously I am not that overweight, I am a UK size 14 now, that’s a US size 10. I absolutely do not overeat, my calorie intake is less than 2000 calories a day, I am gluten free, I eat fairly low carbohydrate and I make sure my protein intake is through fish and eggs. I also eat only high cocoa solid chocolate (70%+) as a treat, rarely, I will eat some ice-cream, but in very small amounts, in other words I am very diet aware.
I made sure the doctor knew this, as he did not once ask me about my diet, also he did not once make any comment on my disease and the fact you need to have a good diet. He insisted that because I was on steroids they would effectively force me to eat more (I know some people have food cravings when they take steroids, that has not been the case for me, I eat less now than I did before I was ill).
I explained to him I had a disease that affected my muscles and exercise was difficult, so I ate fewer calories to compensate, but i didn’t want to eat even less as it may affect my nutrient and protein intake. Not once did he offer dietary advise, all he said was that basically it was my fault and I wouldn’t get better unless I accepted that.
I was so angry!
Then to make matters worse, he said I need to take a steroid inhaler and that..wait for this one, this is the most amazing statement…it was a ‘test’ and he didn’t expect it to work, but just in case.
So, now Im expected to take even more steroids into my body, even though it has been shown they are having little, if no affect, on my chest problem.
I don’t expect doctors to be miracle workers, especially when it comes to a rare disease that has had little research, but taking the time to empathise with a patient and ask questions and listen, rather than make assumptions, might actually open up some area that hasn’t been explored and by doing so, we may find out a cause that wasn’t expected. Good science and in turn good medicine, come from an open mind and a willingness to explore.
Intersting, most recently, there’s been some research in the UK that states that, “working out a patient’s preferences is as important as an accurate medical diagnosis”. Hmmmm food for thought (pun intended).
I’ve decided I won’t be using the steroid inhaler and I’ll be seeking the opinion of my local GP instead. In the meantime, i’ll put up with the chest problems and hope they improve as the dermatomyositis improves.
I’m still well annoyed though. ROAAARRRRRRRRR!!!!!!!
And he has spoiled my dinner.