visit to new rheumatologist #lupus

I spent the day in Los Angeles on Tuesday. I first visited my cardiologist to check in with him about my blood pressure. He raised the dose of bp medication and we’ll go from there. It was a pretty short appointment.

From there I went to see a new rheumatologist. I’ve seen him once before, but I’m hoping he will take me on as a new patient. I brought him up-to-date with my current treatments and problems. He seemed surprised that the Rituxan hasn’t improved anything yet. Even though my SPECT scan shows evidence of severe vasculitis in my brain, he seems to be unsure what the cause is. My other doctor didn’t do a spinal tap, which would ultimately show what’s going on in my brain. My new doctor ordered one, and I’m having it done tomorrow morning. He is looking for lupus activity, but also a couple other things, like a virus or fungal infection. He said that someone with a compromised immune system like mine could be susceptible to infections like that. There was an undertone of irritation from the doctor about how my other doctor has been handing everything. He also talked about doing an experiment with Solu Medrol, likening it to the “Pepsi Challenge”. I would take a gram of Solu Medrol every day for 3 days and if I respond to it, then we’ll know it’s the lupus causing my headaches.

Obviously, I’m not looking forward to getting a spinal tap done. I had a bad one done about 5 years ago. But this time, it won’t be at a local hospital (which may as well be “Bob’s spinal taps, hair care, and tire center”) I’m getting it done at Cedars-Sinai, and it will be guided by ultrasound with a pediatric needle. They were originally going to make me wait until next Thursday to get it done, but the doctor called the hospital to get me in sooner. I’d much rather get it over with than think about it for another week.

I found out my other rheumatologist was billing my insurance for more time than I was at the office, which is one of the reasons why I wanted to switch. Sometimes while I was there for an infusion, I wouldn’t even get to talk to her, and I don’t think it’s good practice for her to bill my insurance as if she spent time with me. Some of my infusions were over in 2 and 1/2 hours, and she billed the insurance for 4 hours. It makes me question the legitimacy of the co-pays I owe. They would never let me pay the co-pays while I was at the office, it was more like a “we’ll send you a bill” kinda thing. And lately, I have an outstanding balance and they are threatening sending me to collections. My information has been given to receive statements a hundred times, but I still haven’t gotten anything, and no one has been willing to explain why. It’s all a bunch of horse shit to me.

Last time I was at her office, she was having a meeting in her tiny waiting room with a couple other ladies about how to attract more “high-end patients”. I was pretty insulted. I didn’t know the Hippocratic Oath stated to “only treat rich sick people” somewhere.

So those two incidents, along with the fact that I’m not doing better and that she seems unwilling to get to the bottom of it, I decided I need to look for care elsewhere. I hope I chose the right path.

My neurologist is giving me nortriptyline for my headaches. I’m not excited about taking it since it’s an antidepressant, but from what I’ve read, it has been really helpful for people with migraines, and also helps people sleep too. I have a migraine almost every day. I sleep for shit, too. Both of these things are keeping me from having a life beyond the couch.

The heart palpitations are still bad, and I have an appointment with my Endocrinologist late September. I’m gonna have him check my thyroid.

Other than that, same old shit. Still in pain, still not sleeping, still have no social life.

That’s it for now, I guess.

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