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.
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Athenalee, Wow! A phone call and a conversation with this specialist is fantastic. This guy certainly is demonstrating top medical interest in your situation. I am overjoyed that you have made a connection and that you can can feel a glimmer of hope about managing the Sjogren's.
Can you get those labs and observations locally? How will you proceed from here?