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Undifferentiated Connective Tissue Disease
Autoimmune Diseases | Last Active: May 9, 2023 | Replies (75)Comment receiving replies
Hi Everyone, My 22 y/o son has just been diagnosed with UCTD and Lyme disease. He has had problems with his joints for many years- pain and tears in thumb, wrists, elbows, shoulder ankle, knees . He also has stomach issues - burning in stomach and upset stomach. It is very hard to get to see doctors here in Vermont where we live. I am wondering if anyone can share information about their path to treatment? Is there a clinic at Mayo for this disease? Where they have received excellent care and treatment? My son is really losing hope so we need to find a hospital or clinic who knows something about UCTD. Thank you so much, Jen
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@jenko108 At this stage, seems to me that its time to start grasping at straws. I know I have, and it has helped. I had a bunch of docs make wildly variant diagnoses. So I went to a company and got a limited genome sequencing. It was limited, but it got me started. Then I found the OMIM numbers and gene symbols for most of the diagnoses I had been given, and checked them out to see if I had any of them. I did, so I made my list and took it to me doc. He said That was a good thing to start with. Then He check it out, and settled on a few "most likely" candidates. He also found some lists of lab tests for these genes, and started making them. Finally, he was satisfied that he had found the answers I needed. Anyway, he said he had learned one thing from this. Gene sequencing is not always perfect, but it is very good place to start when you think you may need help. Some of these can be treated, some may not have a non-palliative treatment., but treatments are coming for many once a good diagnosis is made.