Hello Amber Rose and I want to say how sorry I am at the appalling appointments you have been through.
To have a Dr rolling his eyes at you, at any time is inexcusable and his opinion is already invalid in my book !
It sounds to me as if you have had one bad appointment after another. For your first Rheumy to suggest she won't prescribe immunosuppressants suggests to me that she knows very little about autoimmune diseases and Lupus. The whole point of effective medications is to STOP the organ damage rather than wait until it has done it's worst before prescribing. I would not spend another minute under her care anyway. You are very reasonable to question this policy of hers.
Next..... most people's hair loss through SLE is calmed right down when their system is calmed with meds...yours obviously has not been well managed and your body has not got to that point. It is true that Discoid can cause scarring...and I agree that he is getting muddled up with that, which makes me roll my eyes !
I would think to know whether Fibromyalgia does/doesn't exist he would have had to run a very extensive research program and it sounds like a personal opinion to me, which has no place in medicine.
Do you have any other Rheumy you can go to, even if it means travelling ? Do you have any family support whilst going to these appointments? somebody who is calm but assertive ? That can be really helpful.
It is also good to go with a plan of what you need to say in a reasonable, concise and intelligent manner; so writing it all out and questioning in a rational way can make the time spent more fruitful; however, I am not sure that you would have much faith in their responses anyway given their track record so far.
There are good Rheumy's out there , so don't give up and do keep a daily diary of events noting your pain/symptoms and pain grading them, note what they stop you doing and how you feel, jot down the weather pattern and the activities you are doing. Make specific observations ie I can't lift the pan out of the cupboard etc That way they can assess how well controlled you are with your joint /mobility pain...or not.
I am glad you felt you could come here...... let us know how you get on and what your next step is....whatever is going on with you...it needs to be sorted and if they say it is not Lupus and/ or fibromyalgia...then the question is...What is it and what is causing the high anti ds dna ?.......................Take care, Claire
To have a Dr rolling his eyes at you, at any time is inexcusable and his opinion is already invalid in my book !
It sounds to me as if you have had one bad appointment after another. For your first Rheumy to suggest she won't prescribe immunosuppressants suggests to me that she knows very little about autoimmune diseases and Lupus. The whole point of effective medications is to STOP the organ damage rather than wait until it has done it's worst before prescribing. I would not spend another minute under her care anyway. You are very reasonable to question this policy of hers.
Next..... most people's hair loss through SLE is calmed right down when their system is calmed with meds...yours obviously has not been well managed and your body has not got to that point. It is true that Discoid can cause scarring...and I agree that he is getting muddled up with that, which makes me roll my eyes !
I would think to know whether Fibromyalgia does/doesn't exist he would have had to run a very extensive research program and it sounds like a personal opinion to me, which has no place in medicine.
Do you have any other Rheumy you can go to, even if it means travelling ? Do you have any family support whilst going to these appointments? somebody who is calm but assertive ? That can be really helpful.
It is also good to go with a plan of what you need to say in a reasonable, concise and intelligent manner; so writing it all out and questioning in a rational way can make the time spent more fruitful; however, I am not sure that you would have much faith in their responses anyway given their track record so far.
There are good Rheumy's out there , so don't give up and do keep a daily diary of events noting your pain/symptoms and pain grading them, note what they stop you doing and how you feel, jot down the weather pattern and the activities you are doing. Make specific observations ie I can't lift the pan out of the cupboard etc That way they can assess how well controlled you are with your joint /mobility pain...or not.
I am glad you felt you could come here...... let us know how you get on and what your next step is....whatever is going on with you...it needs to be sorted and if they say it is not Lupus and/ or fibromyalgia...then the question is...What is it and what is causing the high anti ds dna ?.......................Take care, Claire
