“Should I Stay, Or Should I Go?” The words to that old song kept running through my head as I sat at my work desk staring at my computer screen, but seeing nothing. I was fighting back tears. Concentrating on my work was next to impossible. I was so tired, I just wanted to put my head down on my desk and close my eyes. I felt awful, and I was terrified that another level nine flare was just around the corner.
I finally moved from my statue-like stance and picked up the handset on my phone. I called my orthopedic surgeon and left a message that I was ready to see the rheumatologist that one of his other patients had recommended. I was at the end of my rope, and grasping for help. It was time to “go”.
I started having symptoms of RA over ten years ago. I saw a rheumatologist at that time who prescribed 2400 mg of Ibuprofen a day for a year. The Ibuprofen helped with the symptoms, but completely tore up my stomach. I still have chronic gastritis.
This first rheumy did not x-ray my hands or feet. He spent very little time with me during my appointments, and he explained nothing. I remember asking him once about my hair falling out by the root. His answer: “You were very sick.” I didn’t like this guy, so I just quit going to see him. I spent the next nine years or so on my own, coping as best I could with OTC medications. That was a mistake.
In May of 2010, I had a serious flare. I was attending a seminar in a town an hour and a half from my home. I had to leave the seminar and go back to my hotel room. I finally found some Celebrex in my purse, and it helped ease the pain a bit. This was a scary experience, because the pain in my feet was so intense, I could barely walk.
Off to my PCP I went, and she referred me to a rheumatologist who has an office two hours away from my home. He did come to a clinic a few times a month in a town only 15 miles from my home. I was happy to have a specialist so close.
This rheumatologist had a much nicer “bedside manor”, but he is way too busy with his main practice to be branching out to clinics in smaller communities. He is a nice, compassionate man, but he is not a good rheumatologist. He did not x-ray my hands or feet, did not order the blood tests he should have ordered, and did not diagnose my illness correctly.
This particular rheumatologist told me I had Erosive Inflammatory Osteoarthritis. He was wrong. It is no wonder he was wrong, because he didn’t examine any of my joints. Twice in the nine months that I saw this doctor, he looked at my hands. He turned them over in his hands and mumbled something to himself that I could not discern. I should have run. I did not.
During the nine months I saw this doctor, I had three level nine flares. I was miserable. I just wanted to close my eyes and go to sleep. I honestly thought it would be OK to not wake up. That was a wake-up call to me. That is when I called my orthopedic doctor, who had been so helpful to me during this time, and asked for a Medrol pack to help me get through the flare.
My orthopedic doctor immediately called in the script for prednisone, and suggested I see another rheumatologist. I didn’t agree to see a new rheumatologist at first, but that day at work when I was so miserable, I called my othro’s office and put the wheels in motion to see my current specialist.
That was the absolute best decision I have made in the last year. I don’t know why I waited so long to change docs. Perhaps it was because I felt so sick, and the effort of looking for a new doctor seemed to just be too much. I am so grateful to my orthopedics’s NP who helped me make the transition to a new doctor. She is also the one who made sure I had a script of prednisone when I needed it. She is definitely an angel in my book
I saw my new rheumatologist, a woman, last Tuesday. She is in a college town an hour away from my home. Seeing my new doc was worth the drive. Spending time in a car is so painful for me, but I would drive four hours if necessary to see this doctor.
My new doc spent over an hour with me. She asked questions. She examined almost every joint in my body. She ordered x-rays of my hands and feet. She shook her head a the treatment I received from my previous two doctors.
Doctor M, as I call her, quickly dismissed the diagnosis of Erosive Inflammatory Osteoarthritis. She diagnosed Seronegative RA before she even ordered the x-rays. At this point, because of the insufficient care I was receiving from my old rheumatologist, I have swollen wrists, hands, elbows, knees and ankles.
I start MTX next Friday. I had to delay starting this med until I am finished taking the Sulfa drug prescribed for me by my PCP for a sinus/ear infection. Interestingly enough, Bactrim, or sulfa antibiotics, should not be taken simultaneously with MTX. Dr M explained that taking these drugs in combination could lower my white blood cell count to much.
I will see Dr M again in June. I have an order for blood tests to check my liver function and some other things that I will have that done a week before my appointment.
Dr M’s practice operates so differently from any others I have seen. She sent several pages of paperwork for me to fill out and bring to my first appointment. She has one nurse who makes all the appointments for patients, and is very professional and thorough.
They made it clear to me that I will be working with the nurse and Dr M directly. There will be no “floating” nurses or office personnel to deal with who might not understand or be unfamiliar with RA and the other autoimmune disorders. I found this especially reassuring.
Dr M did not take long in diagnosing Seronegative RA. She wanted the results of my latest blood test from my PCP, so she had her nurse call, and she had the test results in her hands in a matter of minutes.
These people know how to get things done, and get them done quickly. I was amazed and slightly amused. This is a no-nonsense doctor who is good at what she does. She is a down-to-earth character, and I like that!
The reason I am sharing all of this is to encourage those of you who are seeing doctors who are not helping you to find a new one. There are other doctors out there who are competent. Please don’t settle for sub-standard treatment.
I wish I had found this rheumatologist years ago. The x-rays of my hands show early joint damage from RA. Perhaps I could have avoided that if I had seen a good rheumatologist from the start.
I remember thinking that I would be fine. I thought I could take care of myself with OTC drugs. I thought that because I didn’t understand how RA works. I didn’t understand that it is a chronic illness that requires ongoing treatment. I was so, so wrong. My first two rheumys didn’t seem all that concerned, so I wasn’t as concerned as I should have been.
I hope those of you who need to see a different rheumatologist will learn from my experience. I hope you will be able to discern when it is time to move on. If you are thinking, “Should I Stay, Or Should I Go?”, it is most probably time to go.