Not the right Rheumatologist for me
How many times did you change your Rheumatologist?
I'm about 6 months into RA and finally saw my first Rheumatologist in July, after waiting 2 months. I wasn't entirely comfortable with the first visit - very quick; does this or that hurt, bing bam boom - done - see you in 6 weeks and out the door. Yesterday was my 2nd visit and still not impressed, so much so that I'm going to try and get in with another Dr.
Yesterday's appt was asking how I have been feeling, how well did the MethylPrednisolone work since the Prednisone did little, how's sleep, etc. She went through the joints in my hands and wrists asking about soreness, asking about knees, ankles, feet & toes. Some were sore some weren't, but that seems to change randomly - as it did last night. I mentioned my right hip has been really sore, and my left, but not as much and she said that's not RA, it's osteoarthritis. I told her that I've dropped two cups of coffee from my right hand in the past wekk - one in my car! I didn't think about picking up the cups and making sure I had good grips because I've been doing that for years, but now - I have to focus so I'm sure I won't drop them.
So a few things:
1. My hips have never been sore prior to my diagnosis earlier this year, and it's progressively getting more painful. Is she correct? Can you not have RA in your hips? Is it possible to draw that conclusion w/o any examination or x-ray, etc?
2. Joint swelling. She told me that my inflammation marker was normal so no swelling of the joints. I disagree - my hands feel tight most of the time, my rings (biker - so some skull rings 😉 ) are harder to get on or off & my PT says, YES, your hands and fingers are swollen.
3. Dropping the cups of coffee. This is kind of a thing, well to me. She told me that it could be carpal tunnel.
Lastly - She told me that my RA isn't serious. [confused] Guess by not having disfigured joints, etc? So yes, I'm early into RA, but it's not bad RA? But, dammit it hurts every day, some better then others. Am I making a bigger about this then I should? Should I ignore the pain and stop being a whimp? What about the fatigue?
She prescribed me Plaquenil to take for a couple of months with MethylPrednisolone to see if that helps. The MethylPrednisone has some bad side effects for me and the Plaquenil, ugh - have to get an eye exam for a baseline so if my vision becomes blurry there's something to compare it to. [eyeroll]
So there's my venting and whatever else it could be. 😁
Anyone else have Dr. experiences that weren't quite helpful or reassuring?
Thanks all,
Chris
Hi Chris. I'm on my 3rd Rheumatologist. The second one I fired was from the Mayo Clinic. If it doesn't seem that they are responding to your needs, then they aren't the one for you. I look at it as assembling a team. If they can't be part of a collaborative team that includes you, they aren't worth a darn. I don't care where they went to school or what institutions they are associated with.
I have RA in my hips. They can see what are called joint errosions on x-rays. Maybe your doc has x-ray vision?
What inflammation marker is she using? My understanding is that there are a few. Find out and get the number. In fact, get copies of your bloodwork EVERY TIME.
I drop everything. I don't use glass dishes anymore because they are too heavy and it is a big mess when I drop them. My storage containers can be opened by using a spoon as a lever and I can drop them all day long. They don't break and nothing falls out. I have trouble holding a pen. I DON'T HAVE CARPAL TUNNEL.
My joints are not disfigured but my RA is considered moderate to severe. I have many nodules in my lungs. This is not just a joint disease. Pain is a sign that your RA is not well controlled. No, you aren't being a wimp.
I'm on Plaquenil too. Eye exam is no big deal. My understanding is that Plaquenil protects your joints and your insurance company makes you try it first before they approve the bigger guns. Plaquenil ised to cause a detached retina, but my eye doc said it had been reformulated and it doesn't happen any more. He said he has never seen it in 25 years and doesn't know anybody who has. After the reformulation the FDA made them retain the warning though.
Fatigue.... I've got nothing for that. If you figure out how to make that better, please let us ALL know.
Get your blood tests results so we can go through them and compare. That in itself might be enough to make her up her game. If not, maybe you may need to be in the market for a new Rheumatologist.
Good luck.
KT
Whiskersvtwin,
So sorry you are not having a good experience with your Rheumatologist. I am sure others can relate, thank you ktinflorida for chiming in here too and offering some great advice and support!While others have found this link to be helpful when looking for one, you may find it helpful too: http://www.rheumatology.org/Directories/Find-a-rheumatologist
Additionally, here are a few articles that might resonate too:
https://rheumatoidarthritis.net/living/no-3-find-a-rheumatologist-you-trust/
https://rheumatoidarthritis.net/living/meeting-new-rheumatologist/Please check back with us if you have any additional questions or need support!
Best Wishes,
Lauren (RheumatoidArhtritis.net Team)Hi, I see now it's not me it's the dr. I was doing OK with him until he would not refill my meds until I payed my bill in full! So now I'm without any help.
Hi Dammy. Did your doctor tell you why they wouldn't refill your scripts? My first Rheumatologist did that to me. That guy was awful. A lot of people think so. Several years later I ended up in the hospital and he was the only one on staff, so I was stuck with him. He misdiagnosed me in the hospital. I swear that man is dangerous.
Sometimes there are just bad doctors. There are bad teachers, bad police officers, bad accountants, so it stands to reason there can be bad doctors too.
I hope your insurance allows for you to get a second opinion. The trick is trying to keep your job without meds until you get in with a new doctor. My primary care physician ended up writing the scripts for me until I was able to get in with a new Rheumatologist. He saved me.
I hope you find a way to get a lucky break like I did. Take care.
KT
