Pain and frustration out of control!

Forgive me in advance as this may be kind of long. I live in a town where there are only two rheumatologists. The first one I saw last year wrote me off as “it’s all in my head.” He looked at my hands and saw no joint destruction and sneered at me when I asked about RA (I had had a moderate positive CCP test but a negative ANA test.) I have been seeing the other one, Dr. VD, since November of last year. She has been consistently telling me to just exercise and that I will be up and running marathons in no time. At my last appointment last month, she told me that she really only treats people with “serious” diseases (my diagnosis was fibromyalgia.) She did do some blood work but I promptly forgot about it as I have gotten used to being told there was nothing there and that there was nothing wrong with me. Meanwhile, I started into a huge flare that has put me in bed for most of the past week and for all of the last three or four days.

On July 23, I got a call from Dr. VD’s nurse. She said that the doc had diagnosed me with Mixed Connective Tissue Disorder and that she planned to start me on plaquenil but I had to have an eye exam first. On July 30, I had the eye exam and then called Dr. VD’s office to let them know the report was coming and to ask what the next step was. The nurse was a little vague but said that she would call me after the doc had looked at the report from the eye doc.

I didn’t hear anything so I called Dr. VD’s office on Monday. The nurse told me they hadn’t gotten the report from the eye doc yet. I said i had a lot of questions for the doc and that i wanted an appointment and she said that the doc would go over all the results with me at my next scheduled appt (in four months.) Tuesday morning I called the eye doc and she said that she knows that Dr. VD’s office had gotten the report because they had faxed it back asking the eye doc to change the way they addressed Dr VD. So I called Dr VD’s office back and told the nurse that. She said that the doc had not reviewed it yet. I again asked for an appointment because I was doing so poorly and because I had a lot of questions that I felt we’re not being answered. She asked me what the questions were, I rattled off a few of them, she called me back later and answered one of them (sort of) and said that the doc would talk to me at my next appt. I felt like screaming at her.

I went to my primary care doc, Dr. R, this morning. I filled him in on all this and he said that he didn’t understand what was going on with them not being willing to give me an appointment as 1) it is hard to practice medicine by phone and 2) he only makes money if he sees patients. He increased my pain meds (temporarily, to get through this flare) and he also started me on plaquenil which my husband will pick up in a little while. He also suggested that I call Dr. VD’s office and just ask for an appointment (bypass the nurse.) My husband and I walked into Dr. VD’s office on our way home (she is in the same building as Dr. R) and asked for an appointment. The front desk person called the nurse and I told her no, I didn’t want to talk to the nurse, I wanted to talk to the doc.) the front desk person to me that all appt. s have to go through the nurse because the doc has to approve them. Huh? WTH?

I was wondering how you all handle this kind of situation. It has been so long of being told that it is all in my head or that I am not doing enough to make myself better, etc. that I don’t want to wait four freaking months to have my questions answered or to possibly get on a medication that might help me (and that cold take months to start working.) I am not happy to have MCTD but I AM happy to finally have a diagnosis and a possible helpful treatment.

Sorry for the long rant and thanks so much for listening!

The town closest to me doesn't have a rheumy but the one about 25 min away has 3. I drove an hour and a half for 2 years to see the 2nd one I had. Now I use one closer. The 1 st one I had was the only one in the area I lived and after I saw her it took 4 days for her to call and say I had an infection and she was calling in meds. I told her I had called every day since the apt and kept getting put of and that I would not be back. Is their another town close you could go to.

Actually Plaquenil is the medication usually prescribed as a starting drug and it takes a few months to be effective so may be a blessing in disguise to have a delay in seeing the rheumy. It is not all that unusual for your family doctor to treat for maintenance or mild disease. Although it would be nice for your rheumy to answer questions your family doctor should be able to answer questions also.

The next closest town where there are rheumatologists is 1 1/2 hours away. I am seriously considering either looking for one in that area or going to either Atlanta or Birmingham (both 4 hours away.) however, I would have to get someone to take me, and find somewhere to stay the night. Finances are an issue as my husband is chronically unemployed and I am unable to work right now. I have applied for SSI (I am waiting on a hearing for my disability). My primary care doc prescribed the plaquenil but he doesn’t want to follow me on that because that is the rheumy’s job and he feels a bit out of his depth with this. I would like him to do the maintenance and perhaps he will after we get this under control. I would love to have just one doc who does the majority of my treatment.

Honestly, I would find another rheumatologist and have all your records and labs sent to the new place for review. Even if it's a bit of a drive, it'd be worth it to have some answers. I have never heard of a doctor having to approve appointments and everyone having to go through a nurse. Seems to me the doctor just doesn't want to be bothered.