← Return to Biopsy-confirmed NLD-SFN + autonomic symptoms - What caused yours?

Discussion
Comment receiving replies
Profile picture for dfgriggs @dfgriggs

Hello kjammer21,
Your symptoms are an almost exact match to mine. I do see symptom exacerbation with excessive or increased activity. I also am basically seronegative on most standard bloodwork for typical rheumatologic conditions. I have had a UC diagnosis (18 mos ago) that is currently well managed with just mesalamine. While I cannot offer any input on causation as I am also seeking answers; I can offer that I will be meeting initially with internal medicine at Mayo in the coming weeks. Hopefully, they will be able to add to this conversation and provide some answers relating to underlying disease or condition so that possible healing avenues can be explored vs symptom management.

Jump to this post


Replies to "Hello kjammer21, Your symptoms are an almost exact match to mine. I do see symptom exacerbation..."

@dfgriggs I hope you can find some answers! I am blown away by the lack of knowledge and understanding of our issues and how difficult it is making the root cause mission! I am
Also finding it difficult to get to specialist with proper autonomic testing equipment and capabilities. If you are comfortable and remember please share any updates on your investigation process and if you find anything that provides relief or insight. Best of luck to you 🤞