I was diagnosed with SFN recently. I have read a lot of post but mine is different. I feel like I am having a heart attack everyday. I had to go to Mayo Clinic in Florida to get answers. I have shortness of breath, pressure in the center of my chest with pain in the same place, get sharp stabbing pains on both sides mostly on the left side around my heart, tingling in hands, groin, and face. I also hurt in between my shoulder blades, bowel and bladder issues, blood pressure drops when I stand up and stays low. I have been dealing with this for over a year. I am unable to work because of it. I also can not sleep, I have PLMD. My feet stay sore and swell. Eyes are effected, my hearing also. There is more but as you can see I have not quality of life.
I was diagnosed with SFN recently. I have read a lot of post but mine is different. I feel like I am having a heart attack everyday. I had to go to Mayo Clinic in Florida to get answers. I have shortness of breath, pressure in the center of my chest with pain in the same place, get sharp stabbing pains on both sides mostly on the left side around my heart, tingling in hands, groin, and face. I also hurt in between my shoulder blades, bowel and bladder issues, blood pressure drops when I stand up and stays low. I have been dealing with this for over a year. I am unable to work because of it. I also can not sleep, I have PLMD. My feet stay sore and swell. Eyes are effected, my hearing also. There is more but as you can see I have not quality of life.
The only one you really have to be careful of is B6...not your typical B vitamin as far as water soluble. And if you are one that has high levels of it already, you have to be careful of any supplement you take because some of them have a lot of B6 in them.
I was diagnosed with SFN recently. I have read a lot of post but mine is different. I feel like I am having a heart attack everyday. I had to go to Mayo Clinic in Florida to get answers. I have shortness of breath, pressure in the center of my chest with pain in the same place, get sharp stabbing pains on both sides mostly on the left side around my heart, tingling in hands, groin, and face. I also hurt in between my shoulder blades, bowel and bladder issues, blood pressure drops when I stand up and stays low. I have been dealing with this for over a year. I am unable to work because of it. I also can not sleep, I have PLMD. My feet stay sore and swell. Eyes are effected, my hearing also. There is more but as you can see I have not quality of life.
I was diagnosed with SFN recently. I have read a lot of post but mine is different. I feel like I am having a heart attack everyday. I had to go to Mayo Clinic in Florida to get answers. I have shortness of breath, pressure in the center of my chest with pain in the same place, get sharp stabbing pains on both sides mostly on the left side around my heart, tingling in hands, groin, and face. I also hurt in between my shoulder blades, bowel and bladder issues, blood pressure drops when I stand up and stays low. I have been dealing with this for over a year. I am unable to work because of it. I also can not sleep, I have PLMD. My feet stay sore and swell. Eyes are effected, my hearing also. There is more but as you can see I have not quality of life.
I learned about the B6 toxicity from members of the closed Facebook group...some of whom were affected by it and made pretty sick until it was identified as the cause of some of their health issues.
I was diagnosed with SFN recently. I have read a lot of post but mine is different. I feel like I am having a heart attack everyday. I had to go to Mayo Clinic in Florida to get answers. I have shortness of breath, pressure in the center of my chest with pain in the same place, get sharp stabbing pains on both sides mostly on the left side around my heart, tingling in hands, groin, and face. I also hurt in between my shoulder blades, bowel and bladder issues, blood pressure drops when I stand up and stays low. I have been dealing with this for over a year. I am unable to work because of it. I also can not sleep, I have PLMD. My feet stay sore and swell. Eyes are effected, my hearing also. There is more but as you can see I have not quality of life.
I've been taking 1000 mg of B6 for more than 35 years when it was discovered that my body did not handle B6 properly. Under any kind of stress, I pee out all B6 leaving not enough for my body's needs. So I take the large doses in order to have the very small amount needed for proper functioning. Whenever my B6 level has been tested, it shows up as normal. I have an appointment next February with a neurologist in Dr. Oaklander's network, and will be interested to see what he has to say about my B6.
Thanks @steeldove, It is an interesting article. It reminded me of a statement about if you live long enough you'll get PN made by Dr. William Kennedy at the Minnesota Neuropathy Association 20 year celebration in Sept 2016. My notes from his speech:
3rd Speaker – Dr. William Kennedy – “Simple inventions that quantify touch on finger, vibration on toes and sweating in neuropathy”
My favorite speaker of the day. All of the speakers had a Q & A after their talk and one of the burning questions of the day was how many people are affected by neuropathy in the U.S. and around the world. Pam and Dr. Walk had both said they thought the numbers were around 20 million in the U.S. and up to 128 million in China. Dr. Kennedy said he would take exception with his younger counterparts and said it’s more like 100% if you live long enough. Since there was some discussion of idiopathic PN, Dr. Kennedy asked if we knew how the diagnosis is made for idiopathic. Got my best laugh of the day when he told us it got the name from the idiot neurologist who diagnosed it.
Dr. Kennedy went on to talk about his research work on developing a tool he would like to make available in every GPs office to easily test for neuropathy. More information can be found on his website: The William R. Kennedy Lab - http://kennedylab.med.umn.edu/.
@johnbishop. I understand that such a device already exists, but it's pricey. My neurologist in Massachusetts mentioned such a device when we were discussing the "sweat test" I underwent at Mayo last January. She said that a small device can detect SFN by scanning a patients hands when they are placed on the screen.
Hi @steeldove, I had not heard of a hand scanning device to detect neuropathy. I did find a couple of references about it. It's called a Sudoscan. It sounds interesting. The actual product looks like it was only released last year so probably not too many facilities have it or are aware of it. Hope it works out.
i like the title of this thread... Anyone here dealing with PN? Well, PN is making a mess out of my life. I was putting on my compression stocking s a couple days ago. In the process, I unknowingly caught my pinky toe in the stocking, and pullet it off to the side. I can not feel a think with that foot. Consequently, I broke that pinky toe. Snapped the bone in half. CRAP. I think I am losing calcium in my bones as well, due to the hATTRwt amyloidosis. Yes, someone here is dealing with PN.
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@jimhd and @johnbishop
Biotin is a B-vitamin. B-vitamins are water soluble, therefore you don't have the same risk of overdosing. Here is some information from WebMD regarding Biotin that you might find interesting, https://www.webmd.com/vitamins-supplements/ingredientmono-313-biotin.aspx?activeingredientid=313&activeingredientname=biotin
Based on this information, I may take some as well 🙂
Teresa
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1 ReactionThe only one you really have to be careful of is B6...not your typical B vitamin as far as water soluble. And if you are one that has high levels of it already, you have to be careful of any supplement you take because some of them have a lot of B6 in them.
http://www.easy-immune-health.com/vitamin-b6-toxicity.htmlJohn
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2 Reactions@johnbishop Thanks for that information, John. I was not aware of the problems that can occur with B6 - this was all new to me.
Teresa
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1 ReactionI learned about the B6 toxicity from members of the closed Facebook group...some of whom were affected by it and made pretty sick until it was identified as the cause of some of their health issues.
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1 ReactionI've been taking 1000 mg of B6 for more than 35 years when it was discovered that my body did not handle B6 properly. Under any kind of stress, I pee out all B6 leaving not enough for my body's needs. So I take the large doses in order to have the very small amount needed for proper functioning. Whenever my B6 level has been tested, it shows up as normal. I have an appointment next February with a neurologist in Dr. Oaklander's network, and will be interested to see what he has to say about my B6.
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2 ReactionsAnother interesting article from NIH concerning Neuropathy Pain due to Small Fiber Neuropathy in Aging, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4548010/
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3 ReactionsThanks @steeldove, It is an interesting article. It reminded me of a statement about if you live long enough you'll get PN made by Dr. William Kennedy at the Minnesota Neuropathy Association 20 year celebration in Sept 2016. My notes from his speech:
3rd Speaker – Dr. William Kennedy – “Simple inventions that quantify touch on finger, vibration on toes and sweating in neuropathy”
My favorite speaker of the day. All of the speakers had a Q & A after their talk and one of the burning questions of the day was how many people are affected by neuropathy in the U.S. and around the world. Pam and Dr. Walk had both said they thought the numbers were around 20 million in the U.S. and up to 128 million in China. Dr. Kennedy said he would take exception with his younger counterparts and said it’s more like 100% if you live long enough. Since there was some discussion of idiopathic PN, Dr. Kennedy asked if we knew how the diagnosis is made for idiopathic. Got my best laugh of the day when he told us it got the name from the idiot neurologist who diagnosed it.
Dr. Kennedy went on to talk about his research work on developing a tool he would like to make available in every GPs office to easily test for neuropathy. More information can be found on his website: The William R. Kennedy Lab - http://kennedylab.med.umn.edu/.
John
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1 Reaction@johnbishop. I understand that such a device already exists, but it's pricey. My neurologist in Massachusetts mentioned such a device when we were discussing the "sweat test" I underwent at Mayo last January. She said that a small device can detect SFN by scanning a patients hands when they are placed on the screen.
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1 ReactionHi @steeldove, I had not heard of a hand scanning device to detect neuropathy. I did find a couple of references about it. It's called a Sudoscan. It sounds interesting. The actual product looks like it was only released last year so probably not too many facilities have it or are aware of it. Hope it works out.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3817891/
https://www.sudoscan.com/who-we-are/
John
i like the title of this thread... Anyone here dealing with PN? Well, PN is making a mess out of my life. I was putting on my compression stocking s a couple days ago. In the process, I unknowingly caught my pinky toe in the stocking, and pullet it off to the side. I can not feel a think with that foot. Consequently, I broke that pinky toe. Snapped the bone in half. CRAP. I think I am losing calcium in my bones as well, due to the hATTRwt amyloidosis. Yes, someone here is dealing with PN.
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