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The appointment didn't turn out quite as I imagined that it would, but it did end on a positive note. Sort of.
The doctor is British, so he has his own way of approaching patient interaction; that way is really quite different from this American's way. Thankfully I had a Canadian with me to act as mediator and interpreter :) I like him. Or at least I grew to appreciate him as the meeting went on. It didn't get off to a great start, though, because in very short order he told me that he could not diagnose lupus because I wasn't showing enough solid evidence of the disease. Yeah, floored me. Dar and I just looked at each other like "WTF?"
I tried very hard not to cry (which I seem to do with annoying frequency lately), and I think I held it together as I asked if he then thought that all of the many symptoms I had were simply coincidental. He didn't go that far, but he had an alternative explanation for each of them. He said that all he'd be willing to say at the moment what that I had rheumatism. Which is 19th century speak for "lots of aches and pains."
Things started to take a positive turn - well, "positive" being a relative term - when he noticed that my cognitive functions really are kind of fubar. He asked what other illnesses I've had, and I just blanked. All that came to mind was pneumonia and bronchitis, so that's all I mentioned. I saw Dar stare at me for a second, and then she said, "Asthma. She has asthma." I think I actually slapped my forehead, because really . . . how could I have forgotten that?? Sigh.
Moving along. He tested me for Sjogren's Syndrome, and surprisingly I tested positive on one side even though I had no antibodies for SS. I also have psoriasis and not eczema as I'd been told previously. He found some problems with my sacrum; I'd had lumbar problems a few years ago, but it seems as if things have deteriorated since then.
He's most concerned about the brain involvement, and now so am I. He said that lupus rarely affects the brain, so he's looking at other reasons. I have a brain scan scheduled for next Tuesday morning and an EEG scheduled in about a month. He's trying to set up a referral to a neurologist, but that's going take a miracle. They couldn't even reach the neuro's office by phone; they had to fax the referral request, at which point the neuro's clerk called to say that he's not even going to look through all of the faxes for another two weeks. I figure this guy is going to be booking appointments sometime next June. I'm serious.
He sent me off to get more blood work done, and I had a series of x-rays on my pelvis. I have to go back to him a few weeks when some of these test results are in. Dar has the right take on him: he's a thinker. He's not going to jump to conclusions, and he's not going to give me any bad news until he's positive.
So who knows. Maybe this is a series of unrelated things. I was very disappointed that I didn't get a firm diagnosis. Dar laughed, because she said most people would be happy not to have the dx of lupus, but I'm anxious to get on with the cure. Or if there's not cure, then at least something to still the symptoms. I want my life back.
Dar is working her contacts to see if I can get a PETscan, which is the gold standard for brain scans. I'll be calling my own doctor tomorrow to get him working on a referral to a neurologist, too. Maybe he'll have better luck than the rheumatologist is having. While the day didn't bring the clean results I was hoping for, it still brought forward momentum. I guess it was too much to hope that it would be a simple diagnosis.
Thank you all for your good wishes and your support. This is incredibly frustrating and stressful; having you all in my corner is a blessing.
The doctor is British, so he has his own way of approaching patient interaction; that way is really quite different from this American's way. Thankfully I had a Canadian with me to act as mediator and interpreter :) I like him. Or at least I grew to appreciate him as the meeting went on. It didn't get off to a great start, though, because in very short order he told me that he could not diagnose lupus because I wasn't showing enough solid evidence of the disease. Yeah, floored me. Dar and I just looked at each other like "WTF?"
I tried very hard not to cry (which I seem to do with annoying frequency lately), and I think I held it together as I asked if he then thought that all of the many symptoms I had were simply coincidental. He didn't go that far, but he had an alternative explanation for each of them. He said that all he'd be willing to say at the moment what that I had rheumatism. Which is 19th century speak for "lots of aches and pains."
Things started to take a positive turn - well, "positive" being a relative term - when he noticed that my cognitive functions really are kind of fubar. He asked what other illnesses I've had, and I just blanked. All that came to mind was pneumonia and bronchitis, so that's all I mentioned. I saw Dar stare at me for a second, and then she said, "Asthma. She has asthma." I think I actually slapped my forehead, because really . . . how could I have forgotten that?? Sigh.
Moving along. He tested me for Sjogren's Syndrome, and surprisingly I tested positive on one side even though I had no antibodies for SS. I also have psoriasis and not eczema as I'd been told previously. He found some problems with my sacrum; I'd had lumbar problems a few years ago, but it seems as if things have deteriorated since then.
He's most concerned about the brain involvement, and now so am I. He said that lupus rarely affects the brain, so he's looking at other reasons. I have a brain scan scheduled for next Tuesday morning and an EEG scheduled in about a month. He's trying to set up a referral to a neurologist, but that's going take a miracle. They couldn't even reach the neuro's office by phone; they had to fax the referral request, at which point the neuro's clerk called to say that he's not even going to look through all of the faxes for another two weeks. I figure this guy is going to be booking appointments sometime next June. I'm serious.
He sent me off to get more blood work done, and I had a series of x-rays on my pelvis. I have to go back to him a few weeks when some of these test results are in. Dar has the right take on him: he's a thinker. He's not going to jump to conclusions, and he's not going to give me any bad news until he's positive.
So who knows. Maybe this is a series of unrelated things. I was very disappointed that I didn't get a firm diagnosis. Dar laughed, because she said most people would be happy not to have the dx of lupus, but I'm anxious to get on with the cure. Or if there's not cure, then at least something to still the symptoms. I want my life back.
Dar is working her contacts to see if I can get a PETscan, which is the gold standard for brain scans. I'll be calling my own doctor tomorrow to get him working on a referral to a neurologist, too. Maybe he'll have better luck than the rheumatologist is having. While the day didn't bring the clean results I was hoping for, it still brought forward momentum. I guess it was too much to hope that it would be a simple diagnosis.
Thank you all for your good wishes and your support. This is incredibly frustrating and stressful; having you all in my corner is a blessing.
