Tuesday, January 09, 2007
Bad rheumy!
My new insurance only covers two rheumatologists in Sioux Falls. I looked them up and discovered they were both board certified, so I figured it didn't matter which one I picked since they were in the same office anyway. Now I think I made a mistake.
The first thing the new doc asked me yesterday was why I moved from Colorado to South Dakota. I replied that it was a financial decision, that we could no longer afford to live in Denver since I'd gone on SSDI. His reply was, "What's SSDI?"
I explained that SSDI stood for Social Security Disability Insurance. He claimed he'd never heard of it. Then he said, "How did you get approved for disability for Sjogren's? That isn't disabling!"
He commented that he'd never heard of anyone with Sjogren's who was disabled. I told him that in the case of someone like me with multiple medical conditions including fibromyalgia, the sum total of them could be considered disabling, and that my former doctors agreed on this. I added that the Social Security Blue Book was going to be listing Sjogren's syndrome as a disabling condition very soon. He was amazed.
We went on to discuss my medications. I told him that ever since the new insurance company refused to cover Evoxac and had me switch to pilocarpine, I'd been sweating and drooling excessively from the new med (rather embarrassing in public), and I wanted to know if he could write a letter to the insurance company asking if I could go back to Evoxac, which had no side effects. He said that sweating and drooling were no big deal and that I could either put up with it or pay full price out of my own pocket (over $300 a month) for the Evoxac.
He then looked at my list of supplements and told me to stop taking them. He didn't ask why I took them, whether my former docs approved of them (they did) or whether they helped. I asked why I should stop them if they helped me, and his reply was that it would make my life simpler.
This man also decided, despite a wealth of medical records from two reputable rheumys stating otherwise, that the arthritis in my spine, knees, hands and feet could not be from Sjogren's and must be osteoarthritis from age. I'm only 42; how could I have that much age-related arthritis when I was perfectly fine 10 years ago? He also kept changing the subject whenever I mentioned the fibromyalgia complicating the joint problems from Sjogren's.
He then proceeded to do an hour-long physical exam, which I know was necessary, but he seemed skeptical when I told him how much it hurt. Um, wouldn't most people with fibromyalgia yell when smacked repeatedly on the back with a mallet?? It's a pain amplification disorder, for God's sake! He seemed incredibly impressed with my range of motion even though I told him that I did daily stretching and weekly aquacise; I think maybe he believed someone with fibromyalgia would have to have limited range of motion?
To his credit, he was thorough and sent me out to have five vials of blood drawn and a full set of x-rays. By the time everything was finished, I'd been there for FOUR HOURS! Thank goodness the drive home was less than 15 minutes.
I am quite concerned about having this guy for a rheumatologist. I am due for a continuing disabiity review next year, and I don't believe his views would be at all supportive. I am shocked at his disregard for the opinions of my two prior rheumatologists, both of whom were also board certified and one of whom is quite famous for his research on Sjogren's syndrome.
The only other choice I can afford is to go to his partner. Would he have the same biases being in the same office? There may be other rheumatologists in town, but my insurance won't cover them.
I don't know what to do. I feel as if seven years of progress treating my fibromyalgia and Sjogren's has been undermined. I don't expect miracles; I just want a doc who knows that sometimes fibromyalgia and Sjogren's are disabling, particularly if a person has both. Any idiot could go to the National Institutes of Health website or something equally reputable and read about Sjogren's syndrome causing irreversible liver damage, kidney damage, non-Hodgkins lymphoma and vasculitis. Wouldn't those be considered disabling? And books on Sjogren's syndrome are available in regular shops like Barnes and Noble. One of those books, which I have packed away in a box somewhere in this house, contains articles written by my former doc.
I am quite sore from yesterday's exam, and of course the exhaustion is awful too. I had thought I was in a flare before the appointment, but I'm definitely worse now. Yuck.
And I'm depressed. I can't help it.
Dammit.
The first thing the new doc asked me yesterday was why I moved from Colorado to South Dakota. I replied that it was a financial decision, that we could no longer afford to live in Denver since I'd gone on SSDI. His reply was, "What's SSDI?"
I explained that SSDI stood for Social Security Disability Insurance. He claimed he'd never heard of it. Then he said, "How did you get approved for disability for Sjogren's? That isn't disabling!"
He commented that he'd never heard of anyone with Sjogren's who was disabled. I told him that in the case of someone like me with multiple medical conditions including fibromyalgia, the sum total of them could be considered disabling, and that my former doctors agreed on this. I added that the Social Security Blue Book was going to be listing Sjogren's syndrome as a disabling condition very soon. He was amazed.
We went on to discuss my medications. I told him that ever since the new insurance company refused to cover Evoxac and had me switch to pilocarpine, I'd been sweating and drooling excessively from the new med (rather embarrassing in public), and I wanted to know if he could write a letter to the insurance company asking if I could go back to Evoxac, which had no side effects. He said that sweating and drooling were no big deal and that I could either put up with it or pay full price out of my own pocket (over $300 a month) for the Evoxac.
He then looked at my list of supplements and told me to stop taking them. He didn't ask why I took them, whether my former docs approved of them (they did) or whether they helped. I asked why I should stop them if they helped me, and his reply was that it would make my life simpler.
This man also decided, despite a wealth of medical records from two reputable rheumys stating otherwise, that the arthritis in my spine, knees, hands and feet could not be from Sjogren's and must be osteoarthritis from age. I'm only 42; how could I have that much age-related arthritis when I was perfectly fine 10 years ago? He also kept changing the subject whenever I mentioned the fibromyalgia complicating the joint problems from Sjogren's.
He then proceeded to do an hour-long physical exam, which I know was necessary, but he seemed skeptical when I told him how much it hurt. Um, wouldn't most people with fibromyalgia yell when smacked repeatedly on the back with a mallet?? It's a pain amplification disorder, for God's sake! He seemed incredibly impressed with my range of motion even though I told him that I did daily stretching and weekly aquacise; I think maybe he believed someone with fibromyalgia would have to have limited range of motion?
To his credit, he was thorough and sent me out to have five vials of blood drawn and a full set of x-rays. By the time everything was finished, I'd been there for FOUR HOURS! Thank goodness the drive home was less than 15 minutes.
I am quite concerned about having this guy for a rheumatologist. I am due for a continuing disabiity review next year, and I don't believe his views would be at all supportive. I am shocked at his disregard for the opinions of my two prior rheumatologists, both of whom were also board certified and one of whom is quite famous for his research on Sjogren's syndrome.
The only other choice I can afford is to go to his partner. Would he have the same biases being in the same office? There may be other rheumatologists in town, but my insurance won't cover them.
I don't know what to do. I feel as if seven years of progress treating my fibromyalgia and Sjogren's has been undermined. I don't expect miracles; I just want a doc who knows that sometimes fibromyalgia and Sjogren's are disabling, particularly if a person has both. Any idiot could go to the National Institutes of Health website or something equally reputable and read about Sjogren's syndrome causing irreversible liver damage, kidney damage, non-Hodgkins lymphoma and vasculitis. Wouldn't those be considered disabling? And books on Sjogren's syndrome are available in regular shops like Barnes and Noble. One of those books, which I have packed away in a box somewhere in this house, contains articles written by my former doc.
I am quite sore from yesterday's exam, and of course the exhaustion is awful too. I had thought I was in a flare before the appointment, but I'm definitely worse now. Yuck.
And I'm depressed. I can't help it.
Dammit.
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