1. < Neuropathy
Mentor

Member Neuropathy Journey Stories: What's Yours?

Posted by John, Volunteer Mentor @johnbishop, May 12, 2020

This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.

— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?

Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?

What's your neuropathy story?

Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.

Interested in more discussions like this? Go to the Neuropathy Support Group.

ea1 | @ea1 | Jan 27, 2021
In reply to @artscaping "Good afternoon @ean. Thanks for joining us as we pursue solutions for the symptoms of neuropathy...." + (show)
@artscaping

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

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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.

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1 reply
helennicola | @helennicola | Jan 27, 2021
In reply to @ea1 "Chris Thanks for the warm welcome into the group. I feel like I am at the..." + (show)
@ea1

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.

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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

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1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jan 27, 2021
In reply to @helennicola "Hi Ea1, I don’t know if I agree, I’ve had SFN for 3 yrs., had all..." + (show)
@helennicola

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

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@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.

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1 reply
Hank | @jesfactsmon | Jan 28, 2021
In reply to @helennicola "Hi Hank, I too would be interested (and maybe others) to learn which supplements you take..." + (show)
@helennicola

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.

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@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

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1 reply
helennicola | @helennicola | Jan 28, 2021
In reply to @jesfactsmon "@bogibus @helennicola I have discussed these things before on Connect and that was why I said..." + (show)
@jesfactsmon

@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

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

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1 reply
Hank | @jesfactsmon | Jan 28, 2021
In reply to @helennicola "Hank, I guess I need to take something to aid my memory too!🙄😁 Helen" + (show)
@helennicola

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

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@helennicola
Oh my gosh Helen don't worry! I forget 99% of what I read on Connect. Hank

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ea1 | @ea1 | Jan 28, 2021
In reply to @artscaping "@ea1, and @helennicola, Just the way I see it. I think my neurologist knew my challenge..." + (show)
@artscaping

@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.

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@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.

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1 reply
helennicola | @helennicola | Jan 28, 2021
In reply to @ea1 "@helnnicola and @artscaping I do have some underlying conditions which could impact SFN and therefore plan..." + (show)
@ea1

@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.

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ea1, I hope you get some answers which enable you to help resolve your symptoms. I have had upper and lower spine problems for a while but my ortho dr. always said “that could be a factor but I don’t think so”, so I just went with “idiopathic” and take the gabapentin et al. my neuro recommended (for now) Helen

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ea1 | @ea1 | Jan 28, 2021

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?

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2 replies
helennicola | @helennicola | Jan 28, 2021
In reply to @ea1 "I hear you. Well, I am in the middle of my journey with Neuropathy or SFN...." + (show)
@ea1

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?

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gabapentin also puts me to sleep, I take it 2hrs. before bed but if you have no pain I would not take it as it does not seem to help numbness.(which I don’t have) Helen

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