Good evening @roslyn2314, Greetings......I just read your posts. Let me see if I understand what you are asking. You want to know about diagnostic tests for SFN because you are faced with a long wait for clinicians in Australia.
How was your SFN diagnosis made? Did you have the skin biopsy which is usually done around your ankles? That is the only definitive test I know of for SFN. Were you told the probable cause of your condition? For example, mine is the result of a long series of accidents and surgeries that created a traumatic form of neuropathy.
You also ask about a cure. Unfortunately, there is no cure for neuropathy of any kind at this time. The key is to find a way to ramp up the replacement of the nerves which no longer serve you. At this point, the process takes way too long even though our bodies work hard at it. So we are left with a strong need for something that will mask the pain caused by the lack of sufficient nerves.
I am fortunate to have found the support of medical cannabis. It doesn't wipe out the pain and insufficient functioning of muscles. It just keeps it under control so that we can continue to live and enjoy a reasonably stable existence
Can you purchase medical cannabis in your area?
May you be free of suffering and the causes of suffering.
Chris
Thanks for your reply. My diagnosis initially was made in the surgery of a neurologist..mHe did some walking tests most of which I failed then cold and feeling tests. Said it was SFN and said keep taking Endep and Lyrica. See you in a month for nerve conducting tests. These tests produced an extension of of the diagnosis Long fiber as well. Go off sugar .. See you in 2 months. So no talk of skin tests. He said something has happened to me prior to this .The only thing was a shingles vaccine. I think he likes to string appointments out at $500 a pop.
Since then I have been doing a bit of research. Apparently sugar alcohols empty carbs all exacerbate nerves ..So onto the diet we go to see if I improve
I am reading a book Sugar Crush by Dr Richard Jacoby neurologist who swears sugar is the root of all nerve problems. It’s an interesting read.
Will look into canabis. You can get it here in OZ now. Still can’t believe USA hasn’t got a cure for this .. It’s where all amazing things hatch.. The leaders in everything…maybe not ..Thanks again for your reply
Thanks for your reply. My diagnosis initially was made in the surgery of a neurologist..mHe did some walking tests most of which I failed then cold and feeling tests. Said it was SFN and said keep taking Endep and Lyrica. See you in a month for nerve conducting tests. These tests produced an extension of of the diagnosis Long fiber as well. Go off sugar .. See you in 2 months. So no talk of skin tests. He said something has happened to me prior to this .The only thing was a shingles vaccine. I think he likes to string appointments out at $500 a pop.
Since then I have been doing a bit of research. Apparently sugar alcohols empty carbs all exacerbate nerves ..So onto the diet we go to see if I improve
I am reading a book Sugar Crush by Dr Richard Jacoby neurologist who swears sugar is the root of all nerve problems. It’s an interesting read.
Will look into canabis. You can get it here in OZ now. Still can’t believe USA hasn’t got a cure for this .. It’s where all amazing things hatch.. The leaders in everything…maybe not ..Thanks again for your reply
Good morning. Thanks for filling me in. I have a couple more thoughts....(which is unusual in the morning). I understand the nerve conducting tests. However, the standard for SFN is the skin biopsy which is a 10-second test. However, it has to be sent off for analysis which then enables the neurologist to know what capacity you now have in the nerve cells. Mine was .09 which was quite low.
Good for you doing research on your own. I usually start with the Mayo Clinic site. Then I go to the following sites for additional information: https://www.foundationforpn.org/ https://neuropathycommons.org/
You may want to ask for some dietary help at this point. I gave up sugar (as best I can) coffee, and alcohol. Instead of a cocktail, I make a fruit/vegetable smoothie with my zero-sugar yogurt and some fruit crystals.
@roslyn, I noticed your expectation that a cure for neuropathy needs to be on someones priority list here in the USA. At this point, there is no cure. Nerve regeneration takes a long time and so far there has been no discovery of a "hurry up" button. What we do by sharing on Connect is find folks dealing with similar symptoms who have found mitigating solutions.
Please share the results of your research. There are thousands of folks who follow and read responses on Connect even though they, themselves, do not post. Your help is appreciated.
What was the "surgery of a neurologist" that you had done?
May you find comfort and ease.
Chris
Good morning. Thanks for filling me in. I have a couple more thoughts....(which is unusual in the morning). I understand the nerve conducting tests. However, the standard for SFN is the skin biopsy which is a 10-second test. However, it has to be sent off for analysis which then enables the neurologist to know what capacity you now have in the nerve cells. Mine was .09 which was quite low.
Good for you doing research on your own. I usually start with the Mayo Clinic site. Then I go to the following sites for additional information: https://www.foundationforpn.org/ https://neuropathycommons.org/
You may want to ask for some dietary help at this point. I gave up sugar (as best I can) coffee, and alcohol. Instead of a cocktail, I make a fruit/vegetable smoothie with my zero-sugar yogurt and some fruit crystals.
@roslyn, I noticed your expectation that a cure for neuropathy needs to be on someones priority list here in the USA. At this point, there is no cure. Nerve regeneration takes a long time and so far there has been no discovery of a "hurry up" button. What we do by sharing on Connect is find folks dealing with similar symptoms who have found mitigating solutions.
Please share the results of your research. There are thousands of folks who follow and read responses on Connect even though they, themselves, do not post. Your help is appreciated.
What was the "surgery of a neurologist" that you had done?
May you find comfort and ease.
Chris
Good evening @davidpress. Congratulations on your teaching career. I hope you have wonderful memories of your students and colleagues.
To answer your question about examples of "letting go". Yes, it has helped. Giving up alcohol was easy when I started using medical cannabis. It only took one "accident" to make me sit up and take notice. I had a Jack Daniels Special Select one evening (my all-time favorite). Later I took my cannabis dosage. Well, it wasn't late enough and I had an "overkill" reaction. I also gave up my favorite red wine which wasn't so hard because the owners of the winery retired and it was no longer available. Coffee was a no-brainer. If you are trying to stay calm mentally and have your body stay calm physically....why would you drink coffee. And you are chatting with someone who was the Marketing Director for a coffee company where every employee was required to drink the product.
......and now for the most difficult.....finding ways to let go of "sugar". I had to do a lot of research to find out how sugar just appears to sneak into everything. I make my own fruit and vegetable smoothies and add just a bit of agave. I have never liked the cake and always just ate the icing.
Let's just say, I give it my best shot.
Are you thinking about or trying to let go of some habitual behaviors?
May you have happiness and the causes of happiness.
Chris
Good morning. Thanks for filling me in. I have a couple more thoughts....(which is unusual in the morning). I understand the nerve conducting tests. However, the standard for SFN is the skin biopsy which is a 10-second test. However, it has to be sent off for analysis which then enables the neurologist to know what capacity you now have in the nerve cells. Mine was .09 which was quite low.
Good for you doing research on your own. I usually start with the Mayo Clinic site. Then I go to the following sites for additional information: https://www.foundationforpn.org/ https://neuropathycommons.org/
You may want to ask for some dietary help at this point. I gave up sugar (as best I can) coffee, and alcohol. Instead of a cocktail, I make a fruit/vegetable smoothie with my zero-sugar yogurt and some fruit crystals.
@roslyn, I noticed your expectation that a cure for neuropathy needs to be on someones priority list here in the USA. At this point, there is no cure. Nerve regeneration takes a long time and so far there has been no discovery of a "hurry up" button. What we do by sharing on Connect is find folks dealing with similar symptoms who have found mitigating solutions.
Please share the results of your research. There are thousands of folks who follow and read responses on Connect even though they, themselves, do not post. Your help is appreciated.
What was the "surgery of a neurologist" that you had done?
May you find comfort and ease.
Chris
My world-class neurologist in Pittsburgh told me 12 years ago, when they finally figured out that I had NLDSFN, “This is probably not going to kill you, but it’s going to make you a miserable son-of-a-bitch”…..He was entirely accurate.
Good evening @davidpress. Congratulations on your teaching career. I hope you have wonderful memories of your students and colleagues.
To answer your question about examples of "letting go". Yes, it has helped. Giving up alcohol was easy when I started using medical cannabis. It only took one "accident" to make me sit up and take notice. I had a Jack Daniels Special Select one evening (my all-time favorite). Later I took my cannabis dosage. Well, it wasn't late enough and I had an "overkill" reaction. I also gave up my favorite red wine which wasn't so hard because the owners of the winery retired and it was no longer available. Coffee was a no-brainer. If you are trying to stay calm mentally and have your body stay calm physically....why would you drink coffee. And you are chatting with someone who was the Marketing Director for a coffee company where every employee was required to drink the product.
......and now for the most difficult.....finding ways to let go of "sugar". I had to do a lot of research to find out how sugar just appears to sneak into everything. I make my own fruit and vegetable smoothies and add just a bit of agave. I have never liked the cake and always just ate the icing.
Let's just say, I give it my best shot.
Are you thinking about or trying to let go of some habitual behaviors?
May you have happiness and the causes of happiness.
Chris
I have given up sugar almost entirely. I still eat some blackberries and strawberries with nuts and almond milk in the morning (they have low actual fructose or glucose), but I gave up just about everything that could include sugar or gluten (e.g. bread, pasta, alcohol etc.). It was challenging in the beginning, especially once I understood that agave and other replacements are as bad as sugar. But I made it through and I can't put anything in my mouth that is sugary at all now. I check all labels, and I eat tons of plants which have no sugar or added sugars. Yep - a bit extreme. But my health was much worse until I tackled food as being part of the problem. The good news is that I'm so religious about food that I'm able to have the odd day (maybe once/month) where I allow myself a drink or something that has gluten (e.g. plant-based tacos include gluten). I also don't drink coffee. Its a big change - but if your health is not good this type of change is required and believe me it makes a BIG difference. Food is medicine. I wish you well in your changing life, and am open to sharing recipes and tidbits that might help you through crunch times. 😊
Good morning. Thanks for filling me in. I have a couple more thoughts....(which is unusual in the morning). I understand the nerve conducting tests. However, the standard for SFN is the skin biopsy which is a 10-second test. However, it has to be sent off for analysis which then enables the neurologist to know what capacity you now have in the nerve cells. Mine was .09 which was quite low.
Good for you doing research on your own. I usually start with the Mayo Clinic site. Then I go to the following sites for additional information: https://www.foundationforpn.org/ https://neuropathycommons.org/
You may want to ask for some dietary help at this point. I gave up sugar (as best I can) coffee, and alcohol. Instead of a cocktail, I make a fruit/vegetable smoothie with my zero-sugar yogurt and some fruit crystals.
@roslyn, I noticed your expectation that a cure for neuropathy needs to be on someones priority list here in the USA. At this point, there is no cure. Nerve regeneration takes a long time and so far there has been no discovery of a "hurry up" button. What we do by sharing on Connect is find folks dealing with similar symptoms who have found mitigating solutions.
Please share the results of your research. There are thousands of folks who follow and read responses on Connect even though they, themselves, do not post. Your help is appreciated.
What was the "surgery of a neurologist" that you had done?
May you find comfort and ease.
Chris
I changed the way I eat significantly, and this helped a lot with nerve pain (reduced it). I've not found any neurologist in Canada who has a tool to diagnose peripheral neuropathy. The diagnosis has always been a guess based on available data. this nerve-based disease is not a good one to deal with for a lifetime (which I have for at least 50 years). But eating well and keeping my stress level down helps a lot. I wish I had a miraculous cure I could share...🥲
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Thanks for your reply. My diagnosis initially was made in the surgery of a neurologist..mHe did some walking tests most of which I failed then cold and feeling tests. Said it was SFN and said keep taking Endep and Lyrica. See you in a month for nerve conducting tests. These tests produced an extension of of the diagnosis Long fiber as well. Go off sugar .. See you in 2 months. So no talk of skin tests. He said something has happened to me prior to this .The only thing was a shingles vaccine. I think he likes to string appointments out at $500 a pop.
Since then I have been doing a bit of research. Apparently sugar alcohols empty carbs all exacerbate nerves ..So onto the diet we go to see if I improve
I am reading a book Sugar Crush by Dr Richard Jacoby neurologist who swears sugar is the root of all nerve problems. It’s an interesting read.
Will look into canabis. You can get it here in OZ now. Still can’t believe USA hasn’t got a cure for this .. It’s where all amazing things hatch.. The leaders in everything…maybe not ..Thanks again for your reply
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4 ReactionsGood morning. Thanks for filling me in. I have a couple more thoughts....(which is unusual in the morning). I understand the nerve conducting tests. However, the standard for SFN is the skin biopsy which is a 10-second test. However, it has to be sent off for analysis which then enables the neurologist to know what capacity you now have in the nerve cells. Mine was .09 which was quite low.
Good for you doing research on your own. I usually start with the Mayo Clinic site. Then I go to the following sites for additional information:
https://www.foundationforpn.org/
https://neuropathycommons.org/
You may want to ask for some dietary help at this point. I gave up sugar (as best I can) coffee, and alcohol. Instead of a cocktail, I make a fruit/vegetable smoothie with my zero-sugar yogurt and some fruit crystals.
@roslyn, I noticed your expectation that a cure for neuropathy needs to be on someones priority list here in the USA. At this point, there is no cure. Nerve regeneration takes a long time and so far there has been no discovery of a "hurry up" button. What we do by sharing on Connect is find folks dealing with similar symptoms who have found mitigating solutions.
Please share the results of your research. There are thousands of folks who follow and read responses on Connect even though they, themselves, do not post. Your help is appreciated.
What was the "surgery of a neurologist" that you had done?
May you find comfort and ease.
Chris
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10 ReactionsDo cortisone shots given on top of the foot relieve non diabetic peripheral neurotomy?
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1 Reaction@artscaping
So, has giving up sugar, coffee and alcohol helped?
Good evening @davidpress. Congratulations on your teaching career. I hope you have wonderful memories of your students and colleagues.
To answer your question about examples of "letting go". Yes, it has helped. Giving up alcohol was easy when I started using medical cannabis. It only took one "accident" to make me sit up and take notice. I had a Jack Daniels Special Select one evening (my all-time favorite). Later I took my cannabis dosage. Well, it wasn't late enough and I had an "overkill" reaction. I also gave up my favorite red wine which wasn't so hard because the owners of the winery retired and it was no longer available. Coffee was a no-brainer. If you are trying to stay calm mentally and have your body stay calm physically....why would you drink coffee. And you are chatting with someone who was the Marketing Director for a coffee company where every employee was required to drink the product.
......and now for the most difficult.....finding ways to let go of "sugar". I had to do a lot of research to find out how sugar just appears to sneak into everything. I make my own fruit and vegetable smoothies and add just a bit of agave. I have never liked the cake and always just ate the icing.
Let's just say, I give it my best shot.
Are you thinking about or trying to let go of some habitual behaviors?
May you have happiness and the causes of happiness.
Chris
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Helpful -
Hug
5 ReactionsThanks for your great reply. Surgery just means consultation room here in Australia
My world-class neurologist in Pittsburgh told me 12 years ago, when they finally figured out that I had NLDSFN, “This is probably not going to kill you, but it’s going to make you a miserable son-of-a-bitch”…..He was entirely accurate.
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7 ReactionsCan you define NLDSFN please? Are you talking about peripheral neuropathy, or some other neuropathy?
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2 ReactionsI have given up sugar almost entirely. I still eat some blackberries and strawberries with nuts and almond milk in the morning (they have low actual fructose or glucose), but I gave up just about everything that could include sugar or gluten (e.g. bread, pasta, alcohol etc.). It was challenging in the beginning, especially once I understood that agave and other replacements are as bad as sugar. But I made it through and I can't put anything in my mouth that is sugary at all now. I check all labels, and I eat tons of plants which have no sugar or added sugars. Yep - a bit extreme. But my health was much worse until I tackled food as being part of the problem. The good news is that I'm so religious about food that I'm able to have the odd day (maybe once/month) where I allow myself a drink or something that has gluten (e.g. plant-based tacos include gluten). I also don't drink coffee. Its a big change - but if your health is not good this type of change is required and believe me it makes a BIG difference. Food is medicine. I wish you well in your changing life, and am open to sharing recipes and tidbits that might help you through crunch times. 😊
-
Like -
Helpful -
Hug
2 ReactionsI changed the way I eat significantly, and this helped a lot with nerve pain (reduced it). I've not found any neurologist in Canada who has a tool to diagnose peripheral neuropathy. The diagnosis has always been a guess based on available data. this nerve-based disease is not a good one to deal with for a lifetime (which I have for at least 50 years). But eating well and keeping my stress level down helps a lot. I wish I had a miraculous cure I could share...🥲
-
Like -
Helpful -
Hug
6 Reactions