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Tremors post kidney transplant

Transplants | Last Active: Sep 4, 2022 | Replies (44)

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Thank you for asking. My liver is doing fine. Unfortunately the rest of me continues to slide rapidly down hill. Tremors are worse, muscle and joint pain is severe, my legs and feet have become numb, feet and hands tingle, fatigue, sharp nerve pains, oral ulcers, and more. I saw a neurologist last month who thinks I have Sjogren’s Syndrome, which the labs I took seem to suggest this. It’s another autoimmune disease that can be associated with PBC, which caused my liver cirrhosis. There’s no cure and I’ve found nothing on post transplant occurrences of it. I’m to see a rheumatologist and an oncologist-hematologist. The rapid onset is disconcerting and the whole ordeal very discouraging after having just gone through liver disease and transplant which I’d hoped was giving me a new happy life!

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Replies to "Thank you for asking. My liver is doing fine. Unfortunately the rest of me continues to..."

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?

@athenalee, I'm sorry to hear about the additional complications and conditions. You may wish to share with others dealing with Sjogren's here:

- Sjogren’s Syndrome: Introduce yourself and meet others https://connect.mayoclinic.org/discussion/sjogrens/