Hi everyone, I am new to this place. I was dx with RA about 14 years ago, been to several Dr.'s and only one of them seems to understand my disease.
I am a bit disgruntled at this point. when I moved further north, it was nearly impossible to get into a Rheumatologist. When I did, he was an arrogant and innapropriate jackass. He managed to talk me into about 00.00 worth of blood tests and xrays to tell me that I am in remission, have absolutely no erosions, and my MVP is all gone.
SO I thought about it for awhile, and decided that there was not really and truly a reason for my former RD to mislead me as much as he might have secretly loved to (wink). This new RD went on to tell me that I must have been misdiagnosed and so forth. Needless to say I was in shock.
WHen I went in to get the test results on my second visit, I had my sister go with me. That arrogant physician would not even come into the room but had his asst. Dr. come in to tell me the news. I have since learned that his asst. Dr. is leaving the practice. Can't blame him, I am too.
So anyway, here I sit with this huge Dr. bill I must pay on that because their measurement of Rheumatoid Factor tops out at a 10 and in Indiana it tops out at 14,and I am sitting at a 10, I am now viewed by the medical community here as suffering from nothing more than fibro and moving. HA! Don't think so. I really thought that the RHEUMATOID Factor was an all encompassing nation wide determiner. But then what do I know, I am only the patient, only the person with the Rheumatoid....or not with the rheumatoid.
SO back I go to my prior RD. HE knows me and knows that I am not just "faking " the pain, he has told me I have deterioration and so has my orthopedic surgeon. Could they both be wrong? Does the bone tissue actually replenish itself? Does MVP actually heal itself? Does anyone ever really get cured of Rheumatoid?
Ahhhh questions and more questions. I just do not want to be the one patient that falls through the cracks.
Lydia............The Enbrel helped in Indiana, must have CURED me in Michigan
Hi Lydia,
Nice to have you here. yep, sorry to say, I know the feeling. It's not bad enough that you have to deal with this disease, but to have to deal with some of the biggest pr@#k Dr's on the planet just adds insult to injury. I don't really know about the bone tissue "issue"
It seems everyone does have a story and you never feel alone here. If you have been dx'd with Fibro, please don't take that lightly. Fibro is a very real and significant illness.....don't let anyone tell you otherwise. Some of our friends here with both RA and Fibro feel Fibro is the bigger "stinker". Don't give up though, you had a good Dr before, it may take some time but you'll find another. I have had many unpleasant experiences with Dr's over the years, but I do know there are good ones out there and that we'd be sunk without them. I have switched insurance IPA's and am starting my son with yet another new GP in 2 weeks. I will do my best to go in with an open mind and try not to be in defense mode from the get go....that's sometimes hard for me. Welcome to the group! I'd say trust the docs in Indiana! But that's personal
opinion. Ask to see x-rays showing the erosion then next time a
doc says you don't have it...say you've seen it. I do got to ask,
wher in Indiana were you seen by a doc? I miss it there so
much. When I was first dx'ed (21 yrs ago at the age of 7) I was
seen at Riley Hosp. in Indy. My mom was always treated at IU med
and I jus tthink they have a great rheumatology dept. As for
rheumatoid factor, I've never been positive for it. Thank you so much for the replies. I will definately remain with my Dr. in Indiana. No question about it. If I remain to be seen by an RD here, I have to go about 2 or 3 hours North for any taking new patients. I figured if I was gonna drive, I would go to the one person that believes in me and the one Dr. that has treated me successfully over time. Besides, the winters get pretty bad up here so traveling further North would be rather rediculous, at least to me. My RD is in Muncie, Indiana. He is wonderful, big salute to someone that cares and practices medicine at the same time. Indinapolis also has excellant Dr.'s. The one here just took me for money and I did tell him that I have seen the erosions and he said that they were just not there. THe scans must have been misinterpreted, he just could not see them. I wanted to tell him to get his glasses checked but I thought it would be best just to keep my mouth shut. I found myself doubting the dx from the physicians I have had for years, and that was a very difficult time for me. As I have become more ill, I realized I needed to be on something, that although I may not have visible cysts growing in my body at this time, I am experiencing pain that I have not had for years. First time ever in severe knee pain so I knew from all my symptoms something is not right. I am cautious too of the Rheumatoid factor difference. From 14 to a 10 seems rather significant to me and why the difference in dx with such a spread? I good question to ask my RD I suppose. Regardless, this is the next step I am going to take whether it is the right one to take or not, I have to do something so I have decided to go where I can trust the Rheumatologist. Thank you Karen, I was absolutely in shock for several days. Then I got the bill. Then I was angry with my RD in Indiana, then I finally, finally realized that all that we had been through with this disease, that there was noway he would have mislead me, I know this because he worked diligently with me for over 12 years on finding some drug that would help me. And it did. When I was told I was in remission, and that it would not come back, my head just whirled. All the research and all the advice from Dr.'s was wrong? I really don't think so at all. I was certain that it could be alleviated cause I had read countless reports that some drugs do help. But to vanish as a miracle cure......is only a pipe dream. SO at least I know I am on the right track now and for whatever reason this RD up here wanted to tell me those things is still unknown. I would say that their tests are inaccurate to say the least, expensive, but innacurate. I still do not understand why their Rheumatoid factor is set at 10 and not 14. Regardless, thanks for the input! Lydia Hi Lydia, I am a recent joiner to this group. I think your experience points out just how meaningless the RF is. I have only had one positive RF over the years...it was low positive. My current MD checked my RF when I first saw him, but has not attached any great significance to the numbers. Don't get caught up in a number. How you FEEL is what counts. What meds are you taking for pain control and disease control? I think maybe I've welcomed you Lyndia; but just in case I haven't...Welcome to the group. We're glad you're here!! Lovie
This sounds like the case of an idiot doc. Keep doc hunting and
find one similar to your previous rheumy. Ask him for a
recomendation.
Copyright ArthritisInsight.com