Member Neuropathy Journey Stories: What's Yours?

Good afternoon @ean. Thanks for joining us as we pursue solutions for the symptoms of neuropathy. What you need is a friend like John who has tried it all, evaluated it even more, and has a gentle way of introducing you to options and treatments. I have SFN, small fiber neuropathy and have been walking down the path with John for about four years. Generally, our symptoms are similar and we share treatment ideas and experiences.

The only kind of unfair item is that John has no pain. Maybe that is because I have enough for both of us. I offered to trade him one day but he didn't like my offer.......1 day of my pain for 2 days of his numbness. No go!

You see, we all suffer, we all attempt to structure a somewhat pleasant life. We research, we learn, we listen and then we give it a try. Sometimes we share the results, sometimes we are both in different SFN realms. If you do want to verify that you have SFN, you can ask your specialist for a skin biopsy test. Not difficult, no pain, and pretty specific results. At least that is a place to start.

May you be safe and protected.
Chirs

Chris
Thanks for the warm welcome into the group. I feel like I am at the beginning of a long trip.... started in late 2018. I fully agree that skin SFN test is a must and would also like to find the cause of the SFN if possible. The neurologist I went to wasn’t interested in further testing which was quite surprising.
Difficult to get appointments at neuromuscular specialists in Florida either at Mayo Clinic (don’t take Neuropathy patients) or UF (don’t take new patients). The best I could get is a June appointment at USF.

Hi Ea1, I don’t know if I agree, I’ve had SFN for 3 yrs., had all the usual tests minus the skin punch test, had no underlying health issues, no diabetes, no accidental nerve damage, no drugs, drinking, exercised and ate healthy so my neuro said “idiopathic”. She thought the end result would be the same: managing the symptoms and trying to control the progression. I would get a punch test tomorrow if I knew it could make a difference, what is your reason if I may ask? I hope you get some answers that you can share with us. Helen

Hi Hank, I too would be interested (and maybe others) to learn which supplements you take for energy. I am always interested in hearing what works for someone re our neuropathies. Helen P.S. I contacted Horbaach re the RAla and they said it is just a temporary delay.

@bogibus @helennicola
I have discussed these things before on Connect and that was why I said I'd send the info as a PM, plus it really is not a topic related to this discussion, so I just sent you both a PM. Hank

Hank, I guess I need to take something to aid my memory too!🙄😁 Helen

@ea1, and @helennicola, Just the way I see it. I think my neurologist knew my challenge was SFN. He also knew the test evidence would make it easier to get help from pharmacists and financial assistance from insurance companies when there is a definitive diagnosis. Just what percentage of the nerves are in the testing sample can also tell what stage we might be in and where the road might be headed.

@helnnicola and @artscaping
I do have some underlying conditions which could impact SFN and therefore plan on having the skin punch and blood tests. For close to two years, I had numbness only in one foot... why? Now I have it in both feet while not equal.
So far the neurosurgeon ruled out lumber nerve pressure although my spine is far from being perfect.

I hear you. Well, I am in the middle of my journey with Neuropathy or SFN. I am happy for not having pain to date so gabapentin will probably not help. Right?