Thank you for your response. I appreciate all the information you sent and will read it through. Yes, I am concerned about whether I have this for sure or not and of the progression. My neurologist said that even if I did a skin biopsy and it came back negative, that I could still have it because it might have been that it didn’t show up in the piece they took. So that really confused me as to whether it would be worth it for me to do this test. My neurologist feels that is what I have, even though my last neurologist said I didn’t have it. So I’m just trying to learn as much as I can.
I just read your journey. Is there somewhere on this thread I can go to see what your vitamin and supplement regimen is that helped you? I would really prefer that to trying any medications. I tried acupuncture, but it didn’t help. Thanks!
Hello @joypalmer1 and welcome to Mayo Clinic Connect. It is great to have you here and reaching out to connect with others as you learn of this diagnosis.
You will notice that I moved your post into an existing discussion on neuropathy to allow you to better connect with other members. Members who have recently been part of this discussion and who may be able to share more about their specific experience with their evolution of symptoms and current state include @kfrenc04@retired123@jkcampbell and @kmst1994. kmst1994.
In the meantime, I thought you might like some of the information that can be found in the link below regarding symptoms and causes.
I just read your journey. Is there somewhere on this thread I can go to see what your vitamin and supplement regimen is that helped you? I would really prefer that to trying any medications. I tried acupuncture, but it didn’t help. Thanks!
Good afternoon @joypalmer1, I notice that Amanda has reached out to some other SFN (Small Fiber Neuropathy) members. I didn't see my name......so I am kind of butting in here. However, there is one easy way to validate the SFN diagnosis and that is a simple skin punch biopsy. It just takes seconds and then is sent to a special lab where the number of nerve cells can be counted, My result was .09% which is considered severe. I also have the standard burning and pain as well as the other symptoms of tingle tangles. (that's what I call them).
The cause of my SFN is trauma to include quite a few falls, accidents, and surgeries. You will also hear from @johnbishop who has SFN but only numbness and tingling. Each of us has physical challenges in different ways.
And now for your other question......and that is about COVID. I have had all of the vaccines and boosters without any SFN reaction. However, right now I do have COVID....the newest variant. Why and how I got it I don't know. I do know that COVID on top of SFN is quite a tough challenge. Today is day 13 and I am beginning to feel a bit better and may be on the road to recovery.
Would you mind sharing what treatments and medications you are using or have tried. That would be helpful.
May you be free of suffering and the causes of suffering.
Chris
Thank you for reaching out. My neurologist has been discouraging me from doing the skin biopsy for several reasons. He said he is pretty sure that’s what I have, so why do something invasive that isn’t necessary. He also said if it comes back negative, that doesn’t mean I don’t have it, it could just be that it didn’t show up in the piece they took. So I thought I wanted to do the test to know for sure, but am now pretty confused if I won’t know either way. I just recently found out this might be the diagnosis, so I haven’t tried a lot of things yet. I did try acupuncture, and that didn’t help. I am also taking a 5000 mg of Vitamin B12 every day. I guess I could have SFN without pain and burning. I’m just fearful of what is to come and how fast the progression will be.
Thank you for reaching out. My neurologist has been discouraging me from doing the skin biopsy for several reasons. He said he is pretty sure that’s what I have, so why do something invasive that isn’t necessary. He also said if it comes back negative, that doesn’t mean I don’t have it, it could just be that it didn’t show up in the piece they took. So I thought I wanted to do the test to know for sure, but am now pretty confused if I won’t know either way. I just recently found out this might be the diagnosis, so I haven’t tried a lot of things yet. I did try acupuncture, and that didn’t help. I am also taking a 5000 mg of Vitamin B12 every day. I guess I could have SFN without pain and burning. I’m just fearful of what is to come and how fast the progression will be.
Hi there Joy (if I can call you by your name?), I understand. It is frustrating. I guess you can wait on the skin biopsy........it is just that a confirmed diagnosis tells other medical entities and professional clinicians what they are dealing with in order to help you. You can have multiple punches, e.g. ankle, leg, etc. They are hardly invasive. It takes about 3 seconds and a small bandaid. As long as your neurologist is the only clinician you have and he treats you for SFN, you should be fine. However, if you want to seek help at another facility like Mayo Clinic, you will need the skin biopsy results. And if you want to take advantage of MFR or other therapies, your insurance may require confirmation of the diagnosis.
Now....let's focus on something else.......medical cannabis. Do you live in a state in which medical marijuana is legal? Have you had any experience with medical cannabis? I have managed to control my SFN pain and discomfort without any other pain medicine. I happen to be highly sensitive to medications so this is perfect for me.
I do have GAD.....general anxiety disorder as a result of my SFN and so I use Duloxetine (Cymbalta). Since anxiety creates pain and pain creates anxiety, this helps me avoid that whole merry-go-round.
I see that you are learning a lot from John Bishop about the supplements which help him tremendously.
We are here for you..........no questions or thoughts are ever unwelcome.
I just read your journey. Is there somewhere on this thread I can go to see what your vitamin and supplement regimen is that helped you? I would really prefer that to trying any medications. I tried acupuncture, but it didn’t help. Thanks!
I’m sorry to hear Acupuncture didn’t work. I went to an Integrative Medicine doctor last week and she strongly suggests Acupuncture for the Idiopathic PN part of my health issues. I thought I’d give it a try if it doesn’t hurt me! I’m scheduled for my first (of the 4 she says is needed to see if it helps) next week. Would you mind sharing a little more of your Acupuncture therapy?
Thank you for reaching out. My neurologist has been discouraging me from doing the skin biopsy for several reasons. He said he is pretty sure that’s what I have, so why do something invasive that isn’t necessary. He also said if it comes back negative, that doesn’t mean I don’t have it, it could just be that it didn’t show up in the piece they took. So I thought I wanted to do the test to know for sure, but am now pretty confused if I won’t know either way. I just recently found out this might be the diagnosis, so I haven’t tried a lot of things yet. I did try acupuncture, and that didn’t help. I am also taking a 5000 mg of Vitamin B12 every day. I guess I could have SFN without pain and burning. I’m just fearful of what is to come and how fast the progression will be.
I also have little feeling in my hands, feet and lower legs, but no pain. I had to give up golfing and bowling because of the balance problem and stopped driving when I couldn't feel the gas and brake pedals. I also tried acupuncture, but it did not help. My father and one sister had the same problems so I am convinced mine are genetic.
I am new to this forum. I have been recently diagnosed with small fiber neuropathy. I experience tingling in my hands and feet that started at the same time. I have had many blood tests and a nerve conduction test, and brain, neck and back MRI’s. They didn’t find anything. My neurologist doesn’t seem to think a nerve biopsy is necessary, since he is pretty sure that’s what I have. Has anybody been diagnosed with small fiber neuropathy who doesn’t have pain or burning, just the tingling and pins and needles? I don’t know if this is just the beginning, and the pain is yet to come? I am told 50% of the people diagnosed with this have no cause as to how this happened. I have also heard that there might be some connection to this and the COVID vaccine. Any thoughts on these issues would be much appreciated. Thanks, Joy
I'm 78yrs old now. I was finally diagnosed with small fiber neuropathy several yrs ago. It was puzzling why it presented that way. Awhile later, it occurred to me that I was a heavy alcohol drinker until about age 30yrs. I mentioned it to my doctor and was told it could cause it. The affected area is just on the facial side, down to behind the toes. I experience all the sensations such as tingling, burning, numbness. After trying a few medications, which none helped, I was started on Amitriptyline and it was substantial help immediately. That's what I take now. I discovered a balm called +Plus CBD, 100mg. When it bothers me more than usual, I apply the balm to the affected area and it gives substantial relief. It's something I live with anymore - don't know if this helps anyone but that's my experience.
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Thank you for your response. I appreciate all the information you sent and will read it through. Yes, I am concerned about whether I have this for sure or not and of the progression. My neurologist said that even if I did a skin biopsy and it came back negative, that I could still have it because it might have been that it didn’t show up in the piece they took. So that really confused me as to whether it would be worth it for me to do this test. My neurologist feels that is what I have, even though my last neurologist said I didn’t have it. So I’m just trying to learn as much as I can.
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1 ReactionI just read your journey. Is there somewhere on this thread I can go to see what your vitamin and supplement regimen is that helped you? I would really prefer that to trying any medications. I tried acupuncture, but it didn’t help. Thanks!
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2 ReactionsThank you.
Here is the discussion - Have you tried the new Protocol 525 product for neuropathy relief?: https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/
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1 ReactionThank you for reaching out. My neurologist has been discouraging me from doing the skin biopsy for several reasons. He said he is pretty sure that’s what I have, so why do something invasive that isn’t necessary. He also said if it comes back negative, that doesn’t mean I don’t have it, it could just be that it didn’t show up in the piece they took. So I thought I wanted to do the test to know for sure, but am now pretty confused if I won’t know either way. I just recently found out this might be the diagnosis, so I haven’t tried a lot of things yet. I did try acupuncture, and that didn’t help. I am also taking a 5000 mg of Vitamin B12 every day. I guess I could have SFN without pain and burning. I’m just fearful of what is to come and how fast the progression will be.
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2 ReactionsThank you!
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1 ReactionHi there Joy (if I can call you by your name?), I understand. It is frustrating. I guess you can wait on the skin biopsy........it is just that a confirmed diagnosis tells other medical entities and professional clinicians what they are dealing with in order to help you. You can have multiple punches, e.g. ankle, leg, etc. They are hardly invasive. It takes about 3 seconds and a small bandaid. As long as your neurologist is the only clinician you have and he treats you for SFN, you should be fine. However, if you want to seek help at another facility like Mayo Clinic, you will need the skin biopsy results. And if you want to take advantage of MFR or other therapies, your insurance may require confirmation of the diagnosis.
Now....let's focus on something else.......medical cannabis. Do you live in a state in which medical marijuana is legal? Have you had any experience with medical cannabis? I have managed to control my SFN pain and discomfort without any other pain medicine. I happen to be highly sensitive to medications so this is perfect for me.
I do have GAD.....general anxiety disorder as a result of my SFN and so I use Duloxetine (Cymbalta). Since anxiety creates pain and pain creates anxiety, this helps me avoid that whole merry-go-round.
I see that you are learning a lot from John Bishop about the supplements which help him tremendously.
We are here for you..........no questions or thoughts are ever unwelcome.
Chris
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Like -
Helpful -
Hug
1 ReactionI’m sorry to hear Acupuncture didn’t work. I went to an Integrative Medicine doctor last week and she strongly suggests Acupuncture for the Idiopathic PN part of my health issues. I thought I’d give it a try if it doesn’t hurt me! I’m scheduled for my first (of the 4 she says is needed to see if it helps) next week. Would you mind sharing a little more of your Acupuncture therapy?
I also have little feeling in my hands, feet and lower legs, but no pain. I had to give up golfing and bowling because of the balance problem and stopped driving when I couldn't feel the gas and brake pedals. I also tried acupuncture, but it did not help. My father and one sister had the same problems so I am convinced mine are genetic.
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Like -
Helpful -
Hug
2 ReactionsI'm 78yrs old now. I was finally diagnosed with small fiber neuropathy several yrs ago. It was puzzling why it presented that way. Awhile later, it occurred to me that I was a heavy alcohol drinker until about age 30yrs. I mentioned it to my doctor and was told it could cause it. The affected area is just on the facial side, down to behind the toes. I experience all the sensations such as tingling, burning, numbness. After trying a few medications, which none helped, I was started on Amitriptyline and it was substantial help immediately. That's what I take now. I discovered a balm called +Plus CBD, 100mg. When it bothers me more than usual, I apply the balm to the affected area and it gives substantial relief. It's something I live with anymore - don't know if this helps anyone but that's my experience.
-
Like -
Helpful -
Hug
3 Reactions