A few months ago I had a not so normal eye exam. The optometrist noted an irregularity with one of my tests that I take for my main Lupus medication, Plaquenil. That meant the medication was starting to effect my eyes. So my new rheumatologist had me see an eye doctor (ya know, because they want to make sure to see a “M.D.” behind the name) and go off the medication. The new eye doctor said it looked fine so I’m back on the medication for the time being. I go back in for another round of tests to make sure everything is still okay at the end of October.
I decided to change my rheumatologist as I felt my current one wasn’t working enough for my health. I told my rheumy about my symptoms of my Gastroparesis (my stomach is not working properly) and she never bothered to look further into it or to send me to a GI doctor.
The first meeting with my new rheumy went well! He also is seeing my sister for MCTD (Mixed Connective Tissue Disease). It was a relief because I had a “feeling” that he would tell me that I didn’t have Lupus, but have what my twin has.
The second meeting with my new rheumy soon came up and my view on him suddenly changed. He told me he didn’t think I had Lupus but I had a disease called Sjogren’s (sounds like “show grins”). He said the Lupus marker never showed up on my blood work but came up on the Sjogren’s marker. And the Sjogren’s marker can mean the person has Sjogren’s…or LUPUS! Think about that for a moment. He kept asking if I had any seizures or heart attacks and I replied with a no. I think he is having a hard time believing that I have Lupus because I haven’t had one or the other, but the thing is having one or the other is NOT a prerequisite for Lupus! So he ordered a bunch of more blood work. I see him again at the beginning of October but wasn’t sure if I wanted to. Suddenly after 20 years I just don’t have Lupus?? Plus, I have had three different doctors tell me that I have Lupus. So at my next appointment I am going to talk to him more of why I “don’t have Lupus.” I didn’t get any of my thoughts/opinions out when he mentioned this shocker because I was so dumbfounded on what he all said. If I’m not satisfied, I am going back to my other doctors that believe that I have it!