Small Fiber Neuropathy, Just Diagnosed! Thanks Guys

[JoshuaY46013]

I was finally diagnosed with Small Fiber Neuropathy today using an EMG/NCV

The reason the doctor wanted to repeat the test was because the other neurologist that did the test MISREAD the results.  It was abnormal from the beginning!

I have another APPT in Jan. He is keeping me on current treatment, if it isn't helping as much he said we can switch it around!

I do have a question, I heard it wasn't possible to diagnose Small Fiber Neuropathy with an EMG/NCV, he tested the small fibers on the bottoms of my feet and there was NO response, is it possible to diagnose this with this test?

Thank you for all the support, I feel so relieved!

Josh

[Tuckamore]

You're very welcome. My story is very long and I will not bore you with it. But I have severe SIJ (sacroiliac joint) Dysfunction. It took me almost ten years to find a diagnosis. It is a rare and under diagnosed condition. My condition went too long untreated and there is nothing that can be done to make it "better."

So I know what that is like to wait for that validation. Please keep in touch and become an active member of our community. We are good at listening and will support you the best we can. I am so happy you have answers. Now get the best treatment available.

Take Care,
Tuck

[JoshuaY46013]

It was a long bumpy road, tell me, what are you diagnosed with?  What's going on with you?  Do you have a story?  

I know most if not all of us have struggled in some form or another for validation, it's so difficult to get the acceptance we all need from a diagnosis and I think this is why it's such a sigh of relief, such a "body high" which I too felt!  Even tho, a disease, usually not curable offers so much relief, it's a strange thought to a person that isn't suffering such as I and most around here.  Being diagnosed in our world is VALIDATION, it's hopefully, but not always long awaited understanding!

Thanks again!

[Tuckamore]

Hi Josh,

I know the releif and almost joy that comes from finally having a diagnosis. I know I was on a natural "high" when I finally had a diagnosis after years of searching. I am glad that they were able to get to the root of your symptoms.

You're correct. The information I have read and researched confirms that EMG/NCV is not a reliable diagnostic tool. However I think it is part of the total picture that is used to confirm you diagnosis.  Quantitative sensory testing (QST) is one of the ways this diagnosis is reached. Per your description, your physician did include this in his examination. Tuning forks, touch and similar actions are used in QST.

A diagnosis is often reached by ruling everything else out. Nerve conduction tests and electromyography (EMG tests) are good in diagnosing other neuropathies but  are usually bad in detecting small fiber neuropathies although again play a part in the diagnostic procedure.

You understand that this condition can and usually does effect more than just your extremities. It is my guess that there will be additional testing and close observation in the future.

Congratulations Josh to finally having a diagnosis. I hope you will become an active member of our community. Remember to be assertive in your health care needs. Don't settle for less than you deserve.

Peace,
Tuck