Athenalee, I was hoping that medication adjustment would be the solution for you. I can feel your disappointment and discouragement After seeing your response, I had to look up Sjogren's Syndrome, as I had always associated it with dry mouth and eyes. I also did not realize that it is commonly associated with PBC.
You are wise to seek medical diagnosis now, rather than putting it off. I hope that the rheumatologist and the oncologist-hematologist can provide some you with possible interventions to help you manage the symptoms. In the meantime, I hope and pray that you find some relief from what you are now suffering.
What has your liver transplant team had to say about the post-transplant occurrence of Sjogren's after your transplant for PBC? Do they suggest any additional liver monitoring? Will they be in contact with the specialists?
Now that I’m researching Sjogren’s, I’ve found there are a lot more symptoms, including pain, neuropathy, a persistent dry cough (which I’ve actually had for years), and a number of other systemic issues. I did some searching Wednesday night for Sjogren’s experts in northern New England. I came up with a Dr. Bloch, whose with the Center for Immunology & Inflammatory Diseases at Mass General.
So, I put together a short medical history and some of my lab results and sent it off to him and another research lab at the Center. He actually called me! We discussed Sjogren’s for about a half hour and he ask me to send him my labs. I did, and he responded via email with a lengthy list of his additional observations and lab tests I should have, as well as other medical specialists I should see. It was such a thrill to have this fabulously nice and knowledgeable person who addressed the whole body system for a change to explain to me about Sjogren’s.
My liver doctors told me to see a neurologist sue to the symptoms, I haven’t discussed the Sjogren’s diagnosis with them. So, at least now I have a better understanding of what I face. There’s no cure, not a lot of MDs who’ve treated people with it, and no single treatment for the disease, just the different symptoms. So thank you for your concern and I’m still feeling down, but definitely encouraged by Dr. Bloch’s kindness.