Seeing a Rheumatologist
Last updated: July 2022
I decided to see a rheumatologist, after my dry eye specialist asked me a couple of times if I had seen one, to run blood work that would determine if I had a systemic issue causing my chronic dry eye. That, along with some other troubling symptoms, including tingling and numbness in my arms and hands, led me to make the call.
I asked my dry eye doctor to send over a referral, and the rheumatologist’s office scheduled my appointment for about a month away.
Ordering some tests
In the meantime I was feeling extremely fatigued, and I was increasingly worried about my nerve issues in my arms and hands. I work out regularly, so I wondered if I had a pinched ulnar nerve from lifting weights or if it was from a systemic issue. I stopped the weights and went ahead and saw my general practitioner. I told him about my chronic dry eye and my hand tingling and numbness, and he also said he thought that seeing a rheumatologist was a good idea.
To go ahead and get the process started, he ordered a nerve test, as well as a rheumatology panel. A couple of days later my blood test came back, and I had a positive result on my antinuclear antibody test, which could be indicative of an autoimmune condition.
This increased my suspicion that I might have Sjogren’s, a disease that targets the moisture-producing glands in the body, as well as some organs. I had been tested a year earlier, and the test came back negative. However, the disease can take years to show up in a person’s blood work. Also, when I had the nerve test done, the doctor said that he didn’t really see any nerve damage from a specific source, further leading me and him to the conclusion that my issue might be systemic.
Explaining my symptoms
When I was finally able to see my rheumatologist, we met for about 30 minutes, and I told her my story from the beginning of when my chronic dry eye symptoms developed. She, too, suspected Sjogren’s. I’ve read a lot online about Sjogren's disease and the ways that it manifests itself. So I provided her with additional information about myself, beyond just my dry eye symptoms, that I thought might be helpful.
When she asked if I had dry mouth, a marker of Sjogren’s, I told her I thought that I might. However, I didn't really know what was normal for a person. She asked if I were to drink water all morning, if I would still have cotton mouth if I didn’t continue drinking in the afternoon. I said that, yes, my mouth would be dry. I carried water with me everywhere. Also, I let her know that sometimes I had trouble swallowing meat and bread. It would get stuck in my esophagus, and I would feel pain in my chest until it passed through. However, that had improved since I switched to an anti-inflammatory diet.
She said that sometimes Sjogren’s can cause dryness in the mouth and all the way down into the esophagus. She looked in my mouth and noted that there was no pooling of saliva under my tongue. She said, “You do have dry mouth.” She also checked for swelling in my glands around my throat and asked if I had ever noticed any swelling, but I had not, nor did she find any.
Getting blood drawn
She proceeded to order additional blood work to confirm that I do have Sjogren's, to rule out any other conditions, and to check for any deficiencies. When I went to the lab, I noticed that there were probably 12 to 15 vials to be filled up, and I thought, “That’s a lot of blood.” I warned the lady who drew my blood that I sometimes pass out during procedures like this. Once she started, I was doing fine for about 10 minutes, and then the feeling hit me. I became nauseated and lightheaded and told her that I thought I was going to pass out.
The next thing I remember was waking up on the floor with a group of nurses holding me up and hovering over me. “Not again,” I thought to myself. I told the team that I needed to lay down, and they put me in a wheelchair and brought me to a room where I could rest. I ended up calling my husband, and he and my daughter came and picked me up. Since then I’ve read up a little more on this vasovagal response that I tend to have, and I’ve learned that I need to lay down with my feet elevated any time I have blood drawn.
Trying to get answers
My rheumatologist scheduled my return visit, in which I would find out my results, for about three weeks later. As of my writing this, I was still waiting for those results. Honestly, I am hoping that the Sjogren’s test will come back positive, because I will finally get some answers.
Also, if it does not come back in my blood work, my doctor will order a lip biopsy, which is a more definitive way of confirming whether or not a person has Sjogren’s.
Has having dry eye helped you better advocate for yourself?