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What is my Doc doing? What is she thinking?

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Rheumatoid Arthritis
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Posted 5/16/2009 2:52 AM (GMT 0)

I have RA and I would like to know what the Rheumy is feeling for when she presses into my finger joints at my visit?  What exactly is she feeling for?  Is she looking for a pain reaction?  Is it a "squishyness" in the joint?  Is is a thickening of the hard surface within the joint area?  I'm they type that needs to know what she is looking for- and she is not the type to answer those type of questions fully. 

When I ask she says "you feel good" in a non-committal tone of voice.  What is that??  Good compared to my last visit?  Good compared to other RA patients?  Good compared to what she was expecting to see after the medications changes?  I want a more complete answer, and it seems that I need to know what it is she is looking for to be able to ask a specific question to receive the type of answers I want to get.  She will not volunteer information I do not request directly.

I had the RH factor come up really high a year ago February, and continue to have varying amounts of pain, stiffness and (I think) slight swelling.  Every time the Rheumy sees me she seems to think that the swelling is "good" or "fine" despite the discomfort.  The WBC count every month (for MTX) is a bit high, but the other test for inflammation is always on the high side of normal.  Could the RH factor have been a fluke?  Could it have been high and now be normal, or lower?  Is it just the meds causing me pain?  I wish I could get these answers, but my Rheumy is so hurried she doesn't have time for these questions.  She stated that she is convinced that I have RA, but she didn't give any follow-up reasons that brought her to this conclusion.

Dose anyone have any insight or know the answers to some of these?  I obviously would appreciate any info I can get.

Posted 5/16/2009 3:01 AM (GMT 0)
I would talk to your doc-tell her you need more information and ask if you should schedule a longer appointment next time so there would be time to talk.
If she isn't willing to do that then get a new doc.

Let me tell you what my doc is looking for when she probes my hands and feet.
She is looking for detectable inflamation-thickening in the joints-she can usually tell better then I can if inflamation is present. I have a "marker" joint in the middle finger of my right hand-it is always a bit swollen but the amount of inflamation is a good indicator of how I am doing so she pays particular attention to that.
I also get inflamtion in my toes and that causes tendon problems so she probes them too.

I saw my Rhuemy on Monday and I told her I was doing great but that my shoulder hurt. She had me describe the pain, she said it sounded like it was unrelated to the RA and mostly a muscular problem-then even though it wasn't the RA, she probed the shoulder muscles, did range of motion and resistance testing on my shoulder to be sure and prescribed PT.
I think that is how a Dr. appointment should go-the doctor should listen to you, respond to your concerns, and explain her diagnosis-my doc told me in detail why she did not think this was RA related and what I should expect from PT.
If your doc won't do that it may be time for a new doc.
Posted 5/16/2009 11:29 AM (GMT 0)
I have thought about that a few times now. There is a Rheumy in a town 40 miles away that stood in for this doc while she was on maternaty leave that I could transfer to. He was nice and seemed to take me more seriously than this one does. He was also the one who explained what to expect with progression and treatment. He is just so far away- this rheumy is just 15min away in the hospital my hubby works in.
Posted 5/16/2009 3:23 PM (GMT 0)
Hello, My arthritus started last November and completely floored me. I was only 35 and I believe it was a result of discolated hips at birth. I was unable to walk up stairs, get out of bed and my doctor could only offer me paracetamol. Luckily for me I was involved with a cellular nutrition company in America which produces pharmaceutically graded vitamins and supplements. After taking the specific supplement for arthritus I was amazed at the difference. Within a short time I had pain free full mobility. This route obviously worked for me and I have not suffered since and I have heard it work for others, although I would not like to suggest it would work for everyone. Has anyone else tried this route? 

Posted 5/18/2009 12:58 AM (GMT 0)
If I had a choice between driving 15 minutes to see a Dr. that did not take me seriously or that I did not think addressed my concerns etc or 45 minutes to see one that did I would choose the longer drive.
In fact, I just moved to Virginia and my Rhuemy is an hour and a half away in Maryland-I now need to take a full day off work in order to see her. But, in addition to how great she is in appointments she also returns phone calls herself the same day I call her.
So, I am driving an hour and a half instead of transfering to the hospitals rhuematology clinic ten minutes from my new house.
Posted 5/20/2009 12:48 AM (GMT 0)
Good point.
Posted 5/20/2009 12:50 AM (GMT 0)

Hi Christina, I agree with Sjkly I would drive to see the sympathetic rheumy. Its such a horrible disease you need a caring person to take you seriously and answer all queries. I love my rheumy, she is so wonderful, listens to all my concerns and will sympathise when I'm flaring, always reassures me we will find relief together. I don't feel alone plus she includes my other specialists in her treatment plans so everyone knows whats going on, she's brilliant.

Ellis I tried vitamin and mineral supplements initally they worked for me too, but now are not enough, though I still take them. If they work for you thats great. Long may it last.

I doubt its the meds causing pain, my rheumy also looks for nodules on the joints as well as inflammation. It lets them know whether its osteoarthritis or rheumatoid, she keeps an eye on the swelling, to check if my current level of meds is working enough. If you are too swollen it can damage the joint permanently and thats what she is trying to assess. Hope that helps

Posted 5/21/2009 3:59 AM (GMT 0)

 Don't get me wrong, The rheumy that I have is a good person, and I am sure that she is a decient Dr, but I don't think that she is right for me.  Now all I have to do is pluck up the courage to go do what it takes to switch Drs.

Posted 5/22/2009 2:07 AM (GMT 0)
You need to have a doctor that you are comfortable with. Sometimes it is simply a compatability issue sometimes it really is a poor doctor. Either way if you are not comfortable with your doc you will not end up with the best care or the best outcome.
Go to the doc you like.
(Did I mention I love my rhuemy).
Posted 8/4/2009 4:50 PM (GMT 0)
A doctor who is communicative and you feel comfortable with is critical, no matter what your diagnosis. It has take some time to find one I really like - I did have a great one, but my insurance changed and seeing him would mean thousands in out of pocket I can't afford.

I saw the 'wrong' doctor for 18 months and deeply regret it as my RA got much worse and was poorly managed.
Posted 8/9/2009 11:02 AM (GMT 0)
My Rheumy does not like to be questioned about my meds.  Currently on Methotrexate, Folic Acid and Plaquenil which don't seem to be helping much.  She is hard to understand (from India) and I have to ask her to repeat sometimes which seems to irritate her.  I don't have a problem with her being from India, but I do have a real problem with not being able to discuss my meds.  I have an appt. in Sept. with a new Rheumy my mother saw and I know of several others who go to her and have gotten much better, it's not farther for me to drive but I'd still change.  Doctors that don't take time to answer questions or become defensive are not in my opinion good doctors.

Posted 8/16/2009 12:00 AM (GMT 0)
definately worth the ride to see a good doc. I drive 45 minutes all the time to see docs. I was also born with dislocation of the hip...very bad osteoarthritis but no rheumatoid problems, thank you god!
Posted 8/17/2009 11:48 AM (GMT 0)
I've seen a number of doctors, specialists mostly, for the past 12 years, and have learned that my quality of life is too important to waste time on doctors who don't sit well with me. I seem to receive better treatment from doctors who don't give me a knot in my stomach when I see them. I also will drive to H**L and back to see a good one. I pray before I ask for referrals (My own personal belief) and have been fortunate. Good doctors tend to know, if not hang out with, other good doctors, so once I got a really good one, I had her recommend other good ones. I print up the list of specialists that my insurance will allow me to see, show the list to my appropriate doctor, and usually get at least 3 or 4 recommendations like that. Just something I've picked up over the years. I drive 20 miles to see my rheumy, but if I had to I'd drive 2 hours to see him-he's just that good and is helping me so much.
Posted 8/22/2009 5:40 AM (GMT 0)
I drive 2 1/2 hours to see my rheumy because the ones in my town are jerks. It is worth the drive and she works with me by ordering the lab tests locally and minimizing the trips.
Posted 8/24/2009 5:42 AM (GMT 0)
Same here.  Agree with the others.  The fact you still have questions shows she is not the one for you.  If you can get her to understand she needs to explain more then that's fine, otherwise I would look for one who does.  I was dx'd with RA in '96 and have had more than a few RA doctors.  I too need to know what's going on with my body.  My grandmother is 86 and could care less about what is going on with her body. Just does whatever the doctors says.  Those are the type patients they prefer.  However, these diseases are affecting us younger and younger.  Our minds are much more curious and there is still a great deal of fight for life in our spirits so the doctors cannot get by with just do what I say and take these pills or this test without telling us why.

good luck in finding the right doctor for you.  take care.

Posted 8/31/2009 9:42 AM (GMT 0)
I have been diagnosied with RA and have been on meds for a year, although I have been keeping a pain diary for three years tracking which months I suffered, as well as where it traveled and level of pain 1-10. My pain would rotate around my body affecting different joints
When I have flare-ups the pain feels like I have a toothache in the marrow of my bones that burns and no matter how you position the affected limb,(wrist, shoulder, knee whatever area is flared up) you cannot get it to subside.
This would hit a shoulder one night and be gone only to appear in a wrist or a knee the next. The first year I suffered in Feb, and Nov, the following year it was six months and the third, once it began it didn't seem to go away. I dragged myself into a Rheumatogolist last August and have been on Methotrexate/folic acid for a year, and predisone for the first six months. My pain levels are much better, but the doc wants to put me back on predisone and now start humira. I have no medical insurance and have applied to Abbots patient prescription program last week.
Meanwhile I have a chiropractor who believes I have lymes disease mimicking RA, I am willing to be tested but I feel stuck between two worlds of medicine. Has anyone had any experience or heard of lymes mimicking RA or any other disease for that matter?
NorCal
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