Living with Neuropathy - Welcome to the group

@mandyschneider0 -- my post was answering a private message sent to me from another member. Are you able to share a little more about where you received the treatment? I looked into one of the neuropathy clinics that used low level laser therapy but it was expensive with zero guarantees and it would take 6 to 8 treatments according to them before I could expect any results.

Thanks! John

It's mineral and vitamin shots in between your feet and hands. Then they put suction cups on where it hurts. Which puts a electrical current like a vibration in through nerves. It takes up to 25 treatments. In my case it only took 10 because I young. The clinic also takes Medicare and Medicaid.

I have been diagnosed with idiopathic progressive neuropathy. Has anyone had this problem

I have been diagnosed with a severe case a peripheral neuropathy and the doctor also said it was hitting my small nerves. So I know what it feels like when when someone like you is in so much pain. So I'm so sorry you're in that much pain.

Hello @anniemae, Welcome to Mayo Clinic Connect. I also have idiopathic small fiber peripheral neuropathy and I'm sure other members here also have similar symptoms and conditions. Are you able to share a little about your symptoms? Which bothers you the most?

Each day is different, sometimes my mouth will be numb and now the tingling is worse in my lower legs and feet. I have been on gabapentin and it doesn't seem to help much

Hi anniemae, You're the first person I've 'met' who talks about SFPN affecting their mouth!

My entire face is a nightmare. Even my eyelids burn, sting, and itch. The area around my mouth is very difficult. Even with 4200 mg of Gabapentin, daily, I'm still left with tingling lips and the tip of my tongue feels like I've burned it on something hot.

Gabapentin works fairly well for me. Without Gabapentin my fingertips feel as it needles are stabbing into them, all of my skin feels like a terrible sun burn, and the pain and burning, tingling in my face causes me to just sit very still with my eyes closed.

So I'm lucky that all I'm 'left with' is slight skin burning, and the burning of my lips and numbness of my tongue. The entire area around my mouth is also slightly numb. I cannot feel any food that might be on my face when I'm eating. That's embarrassing.

Since over the years my neuropathies have continued to increase, affecting different organs/systems of my body, I have to seek 'acceptance' of my conditions, in order to achieve some level of sanity.

Every day is indeed different.

Regards, ElaineD

I wondered if there were any tests at Mayo Clinic that might diagnose the real cause... Or, is this the way that the progression will get worse?? Guess I might as well get used to the idea that this is the way it will be!!! I enjoy hearing from someone has some of the problems. Anniemae

Hi @anniemae, you mentioned earlier that you were diagnosed with idiopathic progressive neuropathy. Idiopathic means that they could not determine the cause of your neuropathy when they did the testing. Mine is also idiopathic (small fiber peripheral neuropathy). The neurologist told me it was most likely hereditary and I think he's correct. I've been corresponding with a cousin who has it and I'm pretty sure my sister who passed away a few years ago also had it. This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.
https://www.youtube.com/watch?v=3FrQ7Glvgok

John, thank you for this information. I have had several tests so will look this information up. Anniemae