Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Sorry, . The diagnosis does matter. For example, even though RA and lupus can begin with similar symptoms, the treatment and monitoring for each disease is very different. Is this the one and only rheumatologist you have seen? Maybe a second opinion would be a good idea. Not an MD On Fri, Mar 6, 2009 at 8:30 PM, Overell <patricia.overell@...> wrote: > as my rheumy keeps telling me, it probably doesn't really matter what > we call it, he treats me based on my physical symptoms no matter what > label he puts on it for the insurance company. But, today, he said > something I hadn't heard before in the 5 years I've been seeing him. > For the first time, he mentioned joint damage even though I always > test negative for RA. Why the change? He drew fluid off my knee last > visit, and the white count was sky-high. My knee is better, but my > shoulder hurts. He says the inflammation is still there, bouncing > around my joints. > > I started with a dx of Polymyalgia Rheumatica, then went to > " unspecified Auto-immune arthritic disease " , and am now at > sero-negative RA. > > So today, he doubled my Avara to 20 mg a day, and wants me to come > back in two weeks. Then, he's probably going to start the paperwork > for Orencia.unless by some miracle the Avara really drops my sed rate, > and I have no signs of inflammation in my joints. > > Does a name really matter? It really doesn't change anything, but > offically calling it RA is a bit upsetting. Guess I'll get used to > that, too. Sigh. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2009 Report Share Posted March 8, 2009 Sorry about the new diagnosis . I was mortified when I was diagnosed as well. But I was glad to have a name for the symptoms and the things going on in my body. I hope your meds help the inflammation soon, (Upstate New York) ________________________________ From: Overell <patricia.overell@...> A_Different_Reality <A_Different_Reality@...>; Sent: Friday, March 6, 2009 9:30:57 PM Subject: [ ] Got a new dx today as my rheumy keeps telling me, it probably doesn't really matter what we call it, he treats me based on my physical symptoms no matter what label he puts on it for the insurance company. But, today, he said something I hadn't heard before in the 5 years I've been seeing him.. For the first time, he mentioned joint damage even though I always test negative for RA. Why the change? He drew fluid off my knee last visit, and the white count was sky-high. My knee is better, but my shoulder hurts. He says the inflammation is still there, bouncing around my joints. I started with a dx of Polymyalgia Rheumatica, then went to " unspecified Auto-immune arthritic disease " , and am now at sero-negative RA. So today, he doubled my Avara to 20 mg a day, and wants me to come back in two weeks. Then, he's probably going to start the paperwork for Orencia.unless by some miracle the Avara really drops my sed rate, and I have no signs of inflammation in my joints. Does a name really matter? It really doesn't change anything, but offically calling it RA is a bit upsetting. Guess I'll get used to that, too. Sigh. South Pasadena, CA / Lilydale, MN You can see my galleries at http://www.pbase. com/arenared986 M. Schulz - " All you need is love. But a little chocolate now and then doesn't hurt. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2009 Report Share Posted March 8, 2009 Hi , I know how you feel. My mother had Polymyalgia Rheumatica and was able to put it in remission after a year or so with prednisone. When I first started getting symptoms and hearing RA I was devastated. That's pretty much " forever " ... but some of the other ones are " treatable " ... but in actuality, every case is different... whatever it's name, it all sucks. Wishing you success with the Avara Jill Long Island, NY > ________________________________ > From: Overell <patricia.overell@...> > A_Different_Reality <A_Different_Reality@...>; > Sent: Friday, March 6, 2009 9:30:57 PM > Subject: [ ] Got a new dx today > > > as my rheumy keeps telling me, it probably doesn't really matter what > we call it, he treats me based on my physical symptoms no matter what > label he puts on it for the insurance company. But, today, he said > something I hadn't heard before in the 5 years I've been seeing him.. > For the first time, he mentioned joint damage even though I always > test negative for RA. Why the change? He drew fluid off my knee last > visit, and the white count was sky-high. My knee is better, but my > shoulder hurts. He says the inflammation is still there, bouncing > around my joints. > > I started with a dx of Polymyalgia Rheumatica, then went to > " unspecified Auto-immune arthritic disease " , and am now at > sero-negative RA. > > So today, he doubled my Avara to 20 mg a day, and wants me to come > back in two weeks. Then, he's probably going to start the paperwork > for Orencia.unless by some miracle the Avara really drops my sed rate, > and I have no signs of inflammation in my joints. > > Does a name really matter? It really doesn't change anything, but > offically calling it RA is a bit upsetting. Guess I'll get used to > that, too. Sigh. > > > South Pasadena, CA / Lilydale, MN > You can see my galleries at http://www.pbase. com/arenared986 > > M. Schulz - " All you need is love. But a little chocolate now > and then doesn't hurt. " > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2009 Report Share Posted March 8, 2009 Maybe I didn't explain very well. Yes, I have had a second opinion - at my rheumy's insistence. I didn't like her, she really didn't want to bother with a second opinion, and her way of practicing was to give a diagnosis and a treatment plan and send you back to your PCP. She agree with the Polymyagia at the time, but wasn't at all sure about the Fibro. So I happily went back to my rheumy, whom I love. He goes by what he sees. I am sure that, if he saw any signs of lupus, for example, he would start treating for it. I see him every six weeks or so, and he always starts by asking about my symptoms, pain levels, etc. Then he does a pretty thorough exam, poking and prodding, listening to my heart and lungs, etc. Sometimes I get a cortisone shot, thought he limits those pretty severely. He's drawn the fluid off my knees several times. We talk about my meds, my last lab reports, and he sends me off for more blood work. Usually about 2 tubes worth, but it's been as high as six. And the usual urine sample. He's very thorough. He just doesn't like to put a label on, he's thinks it limiting because there's a lot of overlapping with AI. He's a professor at the Keck School of Medicine at University of Southern California, and he'll be gone for the next week or so because he's lecturing on AI at several other universities across the country. I will be seeing him in two weeks this time, he wants to see how the increase in the Avara is working, and to check my liver function on the higher dose. BTW, his nurse always emails me my lab results, so I know before I go in. He was very disturbed by the high white count, and I never seen him anything but upbeat before. That's probably why I'm worried! South Pasadena, CA / Lilydale, MN You can see my galleries at http://www.pbase.com/arenared986 M. Schulz - " All you need is love. But a little chocolate now and then doesn't hurt. " On Sat, Mar 7, 2009 at 9:14 AM, <Rheumatoid.Arthritis.Support@...> wrote: > Sorry, . > > The diagnosis does matter. For example, even though RA and lupus can > begin with similar symptoms, the treatment and monitoring for each > disease is very different. > > Is this the one and only rheumatologist you have seen? Maybe a second > opinion would be a good idea. > > > Not an MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2009 Report Share Posted March 9, 2009 , your rheumatologist sounds like a good one. In your case, he may have been keeping RA in mind and watching and testing for proof of it. Try not to worry about the white count. In general, getting an accurate diagnosis, or at least narrowing the possibilities down, is desirable. Some developments in rheumatic diseases can occur with no outward signs or symptoms. For example, in rheumatoid arthritis, erosions can happen silently. If one isn’t being monitored for them, they may be missed. Certain symptoms aren’t specific to any one disease, so, if the working diagnosis doesn’t exist or is incorrect, the symptoms may be treated inappropriately. For example, one with a terrible headache could be assumed to have migraine and prescribed sumatriptan when the diagnosis should be temporal arteritis. In that case, the misdiagnosis could be sight-threatening. Often, especially early in the development of a rheumatic disease, it is difficult for physicians to make the diagnosis, but they try to narrow it down so that whatever treatment is chosen is appropriate for the logical possibilities. They also monitor for the possibilities. It’s true though that some patients don’t ever fit neatly into one diagnostic category, and the rheumatologist must treat and monitor as best he can. Not an MD On Sun, Mar 8, 2009 at 1:40 PM, Overell <patricia.overell@...> wrote: > Maybe I didn't explain very well. Yes, I have had a second opinion - > at my rheumy's insistence. I didn't like her, she really didn't want > to bother with a second opinion, and her way of practicing was to give > a diagnosis and a treatment plan and send you back to your PCP. She > agree with the Polymyagia at the time, but wasn't at all sure about > the Fibro. So I happily went back to my rheumy, whom I love. > > He goes by what he sees. I am sure that, if he saw any signs of > lupus, for example, he would start treating for it. I see him every > six weeks or so, and he always starts by asking about my symptoms, > pain levels, etc. Then he does a pretty thorough exam, poking and > prodding, listening to my heart and lungs, etc. Sometimes I get a > cortisone shot, thought he limits those pretty severely. He's drawn > the fluid off my knees several times. We talk about my meds, my last > lab reports, and he sends me off for more blood work. Usually about 2 > tubes worth, but it's been as high as six. And the usual urine > sample. He's very thorough. He just doesn't like to put a label on, > he's thinks it limiting because there's a lot of overlapping with AI. > > He's a professor at the Keck School of Medicine at University of > Southern California, and he'll be gone for the next week or so because > he's lecturing on AI at several other universities across the country. > I will be seeing him in two weeks this time, he wants to see how the > increase in the Avara is working, and to check my liver function on > the higher dose. BTW, his nurse always emails me my lab results, so I > know before I go in. > > He was very disturbed by the high white count, and I never seen him > anything but upbeat before. That's probably why I'm worried! > > Quote Link to comment Share on other sites More sharing options...
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