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Small Fiber Neuropathy

Neuropathy | Last Active: Oct 3, 2023 | Replies (213)

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@dancing1

Thank you so very much. I had blood tests yesterday and have biopsy soon and a test with needles soon. I have Sjogrens and Scleroderma and I just thought it was because of those. My fatigue is the hardest to manage and now leg weakness. I appreciate your reply. Thank you. Finding a good Neurologist has helped that is understanding !

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Replies to "Thank you so very much. I had blood tests yesterday and have biopsy soon and a..."

Hi, dancing1! I used to love to dance before my health decline and do miss it! 😔 I hear you about extreme fatigue! Make sure you have your doctor fully listening to your symptoms and not just look at the blood tests. Sometimes, tests cans come out “normal” but what is normal for some is not normal for you. My iron blood work showed normal but when my neurologist sent in for a more detailed iron panel, it showed deficiency! Same for thyroid. I spent thousands on very expensive blood tests that showed my body was attacking my thyroid gland (thyroid auto-antibodies aka Hashimoto’s thyroiditis) but my rheumatologist never said anything to me about it (my mother had Hashimoto’s and sister had thyroid cancer). The rheumatologist did multiple tests over 2 years and never referred me to an endocrinologist to monitor my thyroid. I went on my own when I wasn’t feeling better to have a thyroid nodule checked and it was suspicious so they recommended removal. That surgery and pathology proved Hashimoto’s and incidentally found a micro cancer and the nodule was affecting my ability to swallow/speak at times (it was over 2.5cm). Btw…I found my own nodule on a ct scan for cervical spine surgery when paying a bill! I happened to look at the pre-surgery work up and noticed the nodule on the report. Do you think any doctor saw this and raised this to me? No!!! Good luck with the blood tests and biopsy and advocating for yourself!

I had leg weakness too. Sjogrens I thought was the easiest. Can come with some interesting symptoms that go far beyond dry eyes/ dry mouth