Monday, March 12, 2007
The lesser of two rheumatologists, I mean evils?
I got a very surprising letter in the mail over the weekend. It was from the first rheumatologist I saw in Sioux Falls, the one I went to in January. This was the guy who told me that I didn't have Sjogren's, that Sjogren's is never disabling and doesn't cause arthritis, that most of my symptoms are from fibromyalgia only, and that the arthritis I do have is from "old age".
It seems that he got a letter from one of my former rheumatologists in Denver who is a famous expert on Sjogren's. Former doc informed current doc that while my bloodowrk is negative, my positive lip biopsy plus undeniable symptomology put me in the "probable" category for Sjogren's syndrome. I won't argue with that because it absolutely fits the diagnostic criteria.
So Sioux Falls rheumy admits I should continue to be treated for Sjogren's even though he doesn't believe I will experience extra-glandular activity, which is ludicrous because I already HAVE extra-glandular activity! The neuropathy, vasculitis, severe reflux, gastroparesis, horrendous fatigue, Raynaud's and neurological symptoms are indicative of the disease affecting my entire body, not just my eyes and mouth. And he didn't say anywhere in his letter whether he has changed his mind about whether or not Sjogren's can be disabling.
Sioux Falls rheumy has agreed to keep me on the Restasis, Plaquenil, and Salagen but did not mention whether he'll continue to prescribe the Mobic which helps my joints. He wants to monitor me on a yearly basis whereas I had been checking my liver and kidney function every three months because of all the medication I'm on. I'm hesitant to see a rheumy so infrequently because I'll be quite lacking in the documentation that SSDI and my long term disability insurance company require.
So while it is a good thing that this rheumy decided to agree with my Sjogren's diagnosis, I don't know if it is enough to persuade me that this is the doctor I want to decide my medical future. How's he going to respond to queries about my ability to work if he only sees me once a year? And even if he saw me more often, would he acknowledge that I am indeed disabled?
On the other hand, the rheumy I saw a few weeks ago is less experienced than rheumy #1, absolutely convinced that I must be lazy just because I have fibromyalgia and insists that my lip biopsy was inadequate despite evidence to the contrary. I don't think she would be any more likely to support a disability claim than the other guy. She wanted me to come in every six months, which would provide more of a chance for me to demonstrate that my limitations are not exaggerated.
Do I go with the board certified guy with outdated notions about Sjogren's or with the woman who hasn't had enough patients to see firsthand the consequences of exercising oneself into a flare? It really is a choice between the lesser of two evils. Which doc would be less of a jerk in the long run?
I see my primary care doc tomorrow, and I will mention my dilemma to her and ask for her professional advice. But ultimately, I suppose the decision is mine to make. I really miss all the choices I had in Denver.
Does anyone have a crystal ball I can borrow?
It seems that he got a letter from one of my former rheumatologists in Denver who is a famous expert on Sjogren's. Former doc informed current doc that while my bloodowrk is negative, my positive lip biopsy plus undeniable symptomology put me in the "probable" category for Sjogren's syndrome. I won't argue with that because it absolutely fits the diagnostic criteria.
So Sioux Falls rheumy admits I should continue to be treated for Sjogren's even though he doesn't believe I will experience extra-glandular activity, which is ludicrous because I already HAVE extra-glandular activity! The neuropathy, vasculitis, severe reflux, gastroparesis, horrendous fatigue, Raynaud's and neurological symptoms are indicative of the disease affecting my entire body, not just my eyes and mouth. And he didn't say anywhere in his letter whether he has changed his mind about whether or not Sjogren's can be disabling.
Sioux Falls rheumy has agreed to keep me on the Restasis, Plaquenil, and Salagen but did not mention whether he'll continue to prescribe the Mobic which helps my joints. He wants to monitor me on a yearly basis whereas I had been checking my liver and kidney function every three months because of all the medication I'm on. I'm hesitant to see a rheumy so infrequently because I'll be quite lacking in the documentation that SSDI and my long term disability insurance company require.
So while it is a good thing that this rheumy decided to agree with my Sjogren's diagnosis, I don't know if it is enough to persuade me that this is the doctor I want to decide my medical future. How's he going to respond to queries about my ability to work if he only sees me once a year? And even if he saw me more often, would he acknowledge that I am indeed disabled?
On the other hand, the rheumy I saw a few weeks ago is less experienced than rheumy #1, absolutely convinced that I must be lazy just because I have fibromyalgia and insists that my lip biopsy was inadequate despite evidence to the contrary. I don't think she would be any more likely to support a disability claim than the other guy. She wanted me to come in every six months, which would provide more of a chance for me to demonstrate that my limitations are not exaggerated.
Do I go with the board certified guy with outdated notions about Sjogren's or with the woman who hasn't had enough patients to see firsthand the consequences of exercising oneself into a flare? It really is a choice between the lesser of two evils. Which doc would be less of a jerk in the long run?
I see my primary care doc tomorrow, and I will mention my dilemma to her and ask for her professional advice. But ultimately, I suppose the decision is mine to make. I really miss all the choices I had in Denver.
Does anyone have a crystal ball I can borrow?
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