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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
I was diagnosed with idiopathic SFN after having a negative result from EMG testing in my feet and legs. I had burning, tingling in my feet and hands and take gabapentin and R -Alpha lipoic acid. It has been 16 mo. since the sudden onset and it has gotten somewhat worse and I have increased my dosage 2x but I have only ever had 1 EMG test done. I think that drs. are only able to treat the pain unfortunately so I have never requested further testing. Whether or not this is smart I don’t know. My greatest hope is that it does not progress too far and that the drug co.’s come up with something better than Gabapentin in the near future. I wish you well.
Replies to "I was diagnosed with idiopathic SFN after having a negative result from EMG testing in my..."
Hello! Im sorry tp hear of ypur pain. Skin punch biopsy is a simple and factual determination for SFN. Tests for underlying causes include genetic testing, multiple blood draws and spinal tap. I have full body SFN caused by B12 deficiency. Outside of Gabepentin, Lyrica is one to try. I have benefited from the controlled release version of it. I also take Cymbalta for anxiety due to the complexity of the disease and receive lidocaine infusion therapy. A multidisciplinary approach is typically used for SFN. I wish you well and hope you continue to communicate with your neurologist and find what may be able to help you.
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@helennicola, Good afternoon, thanks for responding today. I will cut right to the chase. The tingling in hands and feet may be one thing. The fact that you have burning and possibly pain is another story. May I ask, when do you take the gabapentin? Before bedtime? Throughout the day? What is your current dosage? Do you go for myofascial release therapy (MFR)? There is a discussion here to outline the potential benefit of this treatment.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain
The one test that you might explore is the skin biopsy. This is a non-discomfort two-minute test that extracts a small amount of tissue from your leg, for example. The specimen is sent to a special lab that will measure the percentage of living small fiber neuropathy cells in your sample.
I sure would like to think that the medical community is close to a discovery of some way to get our nerves to come alive and be free of symptoms. And someday that might happen. In the meantime, I would like to do what I can to be as pain and irritation-free as possible. Unfortunately, at this point, there is no cure from neuropathy....just some relief and lifestyle adjustments that can help with the quality of life issues. We can be right here to help you discover what is possible. Be healthy and pain-free today. Chris