Moving right along #lupus

I went to see a Lupus expert in my area. I’m thinking he’s my new doctor.

He’s equally as far away as my current rheumatologist, so I’m not saving any time in the car. But if the doctor is good, the drive is always worth it. His office has valet parking, which I hate. You never know if the guy that parks your car has a cold or scratched his ass and didn’t wash or what. His office is equally as small as my other doctor’s office, except he has a separate office next door that serves as an infusion center. It would be nice to get infusions at a center instead of a tiny office. I was told that he is very “scientific” and given the impression that he wasn’t a “people-person” so to speak. But when I met him, the exact opposite was true. I felt comfortable talking to him immediately, which I can’t say about my current doctor. I find my current doctor to be very dismissive sometimes and it makes me hold back. Some appointments with her are better than others.

I of course had to summarize my entire health history, which gets more complicated as time goes. It can be easy to forget things or forget what order they happened. I don’t like having to recount everything like that, but every doctor has you do it for your first appointment.

After that I changed into a gown so he could examine me, which was interesting, because most doctors don’t really examine me for some reason. It’s nice that he’s thorough. He wrote me a prescription for a calcium-channel blocker to help with the Raynaud’s. We talked about the fact that I was there for a second opinion, and that Rituxan has been considered. I talked about my headaches and how vasculitis was suspected, and that I was having a hard time getting approved for a spect scan. He told me that he could draw some blood and send it to Cedars instead of the lab my other doctor uses for more accurate and specific testing. He might be able to tell just with blood if I have inflammation in my brain, and some other lupus markers. He said that vasculitis and brain inflammation should be diagnosed with a spinal tap, but that we’d see what the blood says and go from there. He seemed a little irritated that other doctors haven’t gone this root yet, or done much of anything progressive. It seems he thought the idea of a spect scan was strange too.

He said he would contact me with the results in a week, and if not, I could email him. Yes, HE would contact ME. That’s new. A doctor I don’t have to babysit, and that uses email.

My headaches are still really bad every day. I’ve been in a flare lately, too. I’m crossing my fingers that I start a new treatment soon.

So, hopefully, things are finally moving forward. I feel like I’ve been at a stand-still in my treatment for the past 6 months.





  1. Finding the right doctors make a world of difference! It took me two tries to find the right Hematologist to over see that side of my Antiphospholipid care. Then he immediately wanted to involve a Rheumatologist as well because he felt I had more going on than just APS, which is an autoimmune blood clotting disorder. It likes to show up with Lupus in some folks. Sure enough after originally being told I did not have Lupus by my old PCP because of one negative test result in December, I was officially diagnosed with SLE/Lupus in March by my new PCP and Rheumatologist. There are amazing doctors out there. It sucks that we have to work hard to find them at times, but the work pays off once we do find them. I wish you well on your journey, look forward to hearing more about your story, and hope we can stay in contact.

  2. I loved reading this post! You are exactly where I was 8 months ago i my own Lupus issues. I too had rain inflammation, which was aggravated to a point that I was ‘stroking out’ I’ve lost some sight and exist within a migraine kinda world now but yo seem to have a positive-yet-realistically-dark impression of your illness, as do I. I will be keeping a close eye on you and thank you for sharing!

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