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gfisher100
@gfisher100

Posts: 8
Joined: Jul 16, 2017

Not exactly sure what I have Some say Neuropathy

Posted by @gfisher100, Jul 26, 2017

I was told by an foot doctor that I had symptoms of Neuropathy. My basic systems are that my ankles swell up during the day and go down and normal when I get up in the morning. While sitting is the worse for the ankles and feet. While driving for long periods of time is the worse for my feet and ankles. I do have tingling in the toes and bottom of the feet all of the time. Walking and exercise seems to help with minimal pain. It is annoying mostly when my ankles swell during the day especially the right one. I have on occasion sharp pin like pain on occasion in the caves. Just wondering if anyone have similar problems. My daughter has a mild case of the tingling in the ankles and feet.
I have had my veins worked on thinking this could of been the problem but the annoying symptoms still remain. I am not diabetic and not over weight. I eat mostly veg and fruits with on occasion have protein of some sort.

REPLY

Hello @gfisher100, welcome to Mayo Connect. I’m glad you found us. This is a good place to share health issues, ask questions and learn what others with similar health issues are doing for treatments. The symptoms do sound like neuropathy but the only way to know for sure is to be tested for nerve damage (EMG) and meet with a neurologist. There are many types of autoimmune diseases that share the symptom of neuropathy. Have you seen a doctor or a neurologist?

Here is one of the easiest to understand explanations of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:

John

@johnbishop

Hello @gfisher100, welcome to Mayo Connect. I’m glad you found us. This is a good place to share health issues, ask questions and learn what others with similar health issues are doing for treatments. The symptoms do sound like neuropathy but the only way to know for sure is to be tested for nerve damage (EMG) and meet with a neurologist. There are many types of autoimmune diseases that share the symptom of neuropathy. Have you seen a doctor or a neurologist?

Here is one of the easiest to understand explanations of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:

John

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Hi John,
Thanks for the information. It is a little above my degree of ability to actually comprehend all of what the video explained but it helps me to further some understanding. I am wondering when you say the symptoms seem to point toward Neuropathy. I have been taking some vitamins that were recommend by some supposedly experts. They don’t seem to make a lot of effect with the swelling of the ankles.
I would be interested in my symptoms that I have presented which ones would lead you to believe it is a form of neuropathy?
Not knowing much about this disease I was unaware it even existed until someone made the suggestion that it was neuropathy. Since then I have been trying to find out more and what to do about it? Is there anything that will help? I have read the idea about shock, heat, magnets and a few others. Any of these really work?
Thanks

@johnbishop

Hello @gfisher100, welcome to Mayo Connect. I’m glad you found us. This is a good place to share health issues, ask questions and learn what others with similar health issues are doing for treatments. The symptoms do sound like neuropathy but the only way to know for sure is to be tested for nerve damage (EMG) and meet with a neurologist. There are many types of autoimmune diseases that share the symptom of neuropathy. Have you seen a doctor or a neurologist?

Here is one of the easiest to understand explanations of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:

John

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Hi @gfisher100, the tingling in the toes and the bottom of the feet is what made me think it sounds like neuropathy. I have no medical training and am not a medical professional but I do have peripheral neuropathy (PN) and have had it for over 20+ years. Mine is only numbness and tingling in the feet and ankles now. It started in my toes and similar to what you describe. The only real way to know is to have an EMG test and go to a neurologist to see if they can give you a diagnosis from the test and exam. I still have swelling and discomfort with my feet when I’ve been driving a long distance or sitting/standing for a long time…just have to keep moving. Unfortunately there are a lot of schemes out their to get money off of people suffering from PN so you really have to do your research.

I found something that has worked for me and others but may not work for everyone. You can view my story here on Connect at this link below:

https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=33#comment-36103

You might want to read through what others have shared in the discussion “Anyone here dealing with peripheral neuropathy?” under the Neuropathy Group. Here is the link: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/bookmark/?ajax_hook=action&_wpnonce=d2c60c017b

John

Hi John,
Thanks for your explanation and your history, I am not real sure when I started feeling the tingling in the toes and bottom of the feet. Reflecting back I am sure it has been around for awhile. When I first noticed it I didn’t really take notice because it was not really all that bad. I would guess it has been around for at least 12 years but not really sure. Your information seems to be similar to my situation, I see so many ads for the miracle drug or what ever they were peddling. It is a real shame that this occurs but we all need to be aware. From what you are saying I have come to the same conclusion that there really is nothing that will reduce the tingling or swelling in the ankles. My only relief in the swelling is during the time we are sleeping.
I would like to find mainly the reduction of swelling in the ankles while I am driving. It seems that not moving the foot very often from the gas peddle is a real problem that seems to irritates the swelling and the problem. This makes it real difficult to do lots of traveling in a day in our RV.
Hopefully, someone will come up with some relief that reduces the tingle and swelling. Until then I guess we just live with it.
Garry

@gfisher100

Hi John,
Thanks for your explanation and your history, I am not real sure when I started feeling the tingling in the toes and bottom of the feet. Reflecting back I am sure it has been around for awhile. When I first noticed it I didn’t really take notice because it was not really all that bad. I would guess it has been around for at least 12 years but not really sure. Your information seems to be similar to my situation, I see so many ads for the miracle drug or what ever they were peddling. It is a real shame that this occurs but we all need to be aware. From what you are saying I have come to the same conclusion that there really is nothing that will reduce the tingling or swelling in the ankles. My only relief in the swelling is during the time we are sleeping.
I would like to find mainly the reduction of swelling in the ankles while I am driving. It seems that not moving the foot very often from the gas peddle is a real problem that seems to irritates the swelling and the problem. This makes it real difficult to do lots of traveling in a day in our RV.
Hopefully, someone will come up with some relief that reduces the tingle and swelling. Until then I guess we just live with it.
Garry

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I added a couple of natural supplements in hopes of reducing the inflammation – turmeric and collagen that is cold water soluble and tasteless (more or less). I even have my wife on the collagen because I told her it also helps the nails and hair. She saw a definite improvement in the growth of her nails – she’s 73 and a whole lot healthier than me. It also helps me drink more water. Water and staying hydrated is another really important thing that I try to do.

Keep searching, there’s an answer out there somewhere! … John

@gfisher100

Hi John,
Thanks for your explanation and your history, I am not real sure when I started feeling the tingling in the toes and bottom of the feet. Reflecting back I am sure it has been around for awhile. When I first noticed it I didn’t really take notice because it was not really all that bad. I would guess it has been around for at least 12 years but not really sure. Your information seems to be similar to my situation, I see so many ads for the miracle drug or what ever they were peddling. It is a real shame that this occurs but we all need to be aware. From what you are saying I have come to the same conclusion that there really is nothing that will reduce the tingling or swelling in the ankles. My only relief in the swelling is during the time we are sleeping.
I would like to find mainly the reduction of swelling in the ankles while I am driving. It seems that not moving the foot very often from the gas peddle is a real problem that seems to irritates the swelling and the problem. This makes it real difficult to do lots of traveling in a day in our RV.
Hopefully, someone will come up with some relief that reduces the tingle and swelling. Until then I guess we just live with it.
Garry

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Hi All,
Because this is a new thing for me Neuropathy, it is very difficult to hear so many tell their stories and no one has a solution to this disease. I read that it is only going to get worse and the years spent keeping health and eating properly and exercising daily comes down to nothing that I did prevented this from happening. I still wonder if this is inherited type of disease, From what I see swelling of the ankles, tingling of the toes and feet and difficulty walking soon to be.
How does the rest of the group see there situation?

I know those of us who have neuropathy have been saying a lot about the pain of the disease and the hopeless ness of having no cure but that’s the beauty of groups like this. Your friends & family don’t understand what we go through & everyone in the group is going more or less through the same. It helps to be able to say it to people who understand. By the way, I don’t know any way to prevent. I find I am so very thankful for those days or hours that aren’t as painful but that has taken quite a long time.
There are many meds etc talked about here & it’s a great resource.

@gfisher100

Hi John,
Thanks for your explanation and your history, I am not real sure when I started feeling the tingling in the toes and bottom of the feet. Reflecting back I am sure it has been around for awhile. When I first noticed it I didn’t really take notice because it was not really all that bad. I would guess it has been around for at least 12 years but not really sure. Your information seems to be similar to my situation, I see so many ads for the miracle drug or what ever they were peddling. It is a real shame that this occurs but we all need to be aware. From what you are saying I have come to the same conclusion that there really is nothing that will reduce the tingling or swelling in the ankles. My only relief in the swelling is during the time we are sleeping.
I would like to find mainly the reduction of swelling in the ankles while I am driving. It seems that not moving the foot very often from the gas peddle is a real problem that seems to irritates the swelling and the problem. This makes it real difficult to do lots of traveling in a day in our RV.
Hopefully, someone will come up with some relief that reduces the tingle and swelling. Until then I guess we just live with it.
Garry

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Hello @gfisher100 – I was diagnosed with idiopathic small fiber peripheral neuropathy and the neurologist thought it may be hereditary but the only way to prove it was testing relatives and that’s not really possible for me plus I’m not really sure about the value of knowing it’s hereditary. The best line I have heard about where the diagnosis “idiopathic neuropathy” came about was from an 80+ year old neurologist doing research to develop an easy test for primary care doctors to determine if you have peripherall neuropathy. He said the term came from the idiot neurologist who did the diagnosis. He got quite a laugh from the crowd – all of who had peripheral neuropathy.

I don’t see the situation as hopeless. Would I like not to have PN – you bet but I was dealt these cards and just have to play them out the best that I can. I try to learn as much as I can from any resource that I can find. Mayo Connect is one of those resources – no better way to gather information and compare symptoms, treatments and at the same time share your own story that may help others who are reading but not posting or just don’t know what to ask. Connect members have a lot of experience of what has worked for them and what hasn’t worked.

Don’t give up your search and keep asking questions. The more we learn about our health issue, the better questions we can ask our doctors and help them help us.

John

I keep hearing doctors dumping so many things on heredity. I would truly like to know what they base this on. There are things that are hereditary altho not always convinced as to genetics being a factor. I believe that many doctors say this as they “do not want” to admit they do not have an answer. Far too many people that “cannot” admit they do not know the reason for something…make something up and others believe what is said and before long many people believe thus…
@johnbishop Great joke and I like humor…you see I read the word and thought that sounds idiotic and it is…an Idiopath right here.

Neuropathy of any type is not easy to live with-no one in my immediate family has neuropathy. Not even any grandparents or great grandparents. No diabetics either and so oft the “N” thing is associated with diabetes.

What do I know? Zilch. I do know I have neuropathy. Why? I don’t know and have not even asked that insurmountable question as I am fearful of cold-cocking an MD for blaming DNA. I do not believe there is any type of insurance for this kind of behavior. Can assure all I “DO” know where I would be and I am not the “bar” type.

Not being argumentative…clarify, always clarify.

@parus

I keep hearing doctors dumping so many things on heredity. I would truly like to know what they base this on. There are things that are hereditary altho not always convinced as to genetics being a factor. I believe that many doctors say this as they “do not want” to admit they do not have an answer. Far too many people that “cannot” admit they do not know the reason for something…make something up and others believe what is said and before long many people believe thus…
@johnbishop Great joke and I like humor…you see I read the word and thought that sounds idiotic and it is…an Idiopath right here.

Neuropathy of any type is not easy to live with-no one in my immediate family has neuropathy. Not even any grandparents or great grandparents. No diabetics either and so oft the “N” thing is associated with diabetes.

What do I know? Zilch. I do know I have neuropathy. Why? I don’t know and have not even asked that insurmountable question as I am fearful of cold-cocking an MD for blaming DNA. I do not believe there is any type of insurance for this kind of behavior. Can assure all I “DO” know where I would be and I am not the “bar” type.

Not being argumentative…clarify, always clarify.

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Here’s the notes I took of the 20 year celebration meeting for the Minnesota Neuropathy Association (http://www.neuropathy-mn.org/):

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/.

Interesting guy to say the least…

John

I find neuropathy is uncomfortable and can even be discouraging…Once I came to accept and “sort of” embrace the condition (I prefer condition to disease, my issue). The meds that were prescribed did negative things that were worse than the Neuropathy. I know others that can and do take them as it helps. I was angry for a while because nothing helped “me”. Anger or negative feelings can cause the neuropathy to be worse for for this Idiopath…grin.

@parus

I find neuropathy is uncomfortable and can even be discouraging…Once I came to accept and “sort of” embrace the condition (I prefer condition to disease, my issue). The meds that were prescribed did negative things that were worse than the Neuropathy. I know others that can and do take them as it helps. I was angry for a while because nothing helped “me”. Anger or negative feelings can cause the neuropathy to be worse for for this Idiopath…grin.

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Yup, been there and done that – Psst, my English teacher taught me better but it’s all because as a technical writer with “iv’e been moved”, I was forced to write to the 8th grade language level. I had many angry sessions with translation centers in the early days but had to resign to doing the best job I could with what tools I had. I let my PN go and did nothing about it for close to 20 years. But it started walking up my legs which made me rethink my options. That’s when I went to the neurologist, had the EMG and exam and was given the idiopathic small fiber peripheral neuropathy diagnosis. Even though I only have the numbness I didn’t like the neurologist telling me their was no real treatment that was going to help and to just let him know when it got worse….HELLO, I don’t want to wait. I started doing my own research and found Mayo Connect and more.

So, my new motto is never give up (could change it to never give up the ship since I was in the Navy).

Happy Tuesday!

John

Liked by keeptrying

Okay, I have been to PT this morning-for my knee. Anyone w/ neuropathy can well imagine what this has done to all other parts of the anatomy as if neuropathy is not enough (:- p). I am 3 wks. into this. An effort to get prior insurance authorization for an injection and I was approved-that takes place on 8/10. Insurance had already approved 6 wks. of PT. Yup, I will finish out that 6 wks. too. I can be as stubborn as a hog on ice at times.

@johnbishop off the topic of “N”. The old cowboy I worked w/ in the early 70’s was in WWII. He never talked about it and never said which branch. He and I were a team and could rope and brand calves in the Spring that would have put rodeo hero’s to shame. When the weather warmed and we could work the higher altitudes we worked on Dude Ranch’s. His wife was 100% Cherokee and he was 1/2. The things I learned by watching.

We had taken a pack trip into the Bridger Wilderness and a retired NY cop was allowed to tag along for free. It was when this cop shoved me aside while the old cowboy (Oscar) and I were packing a horse and said, “This is man’s work!” No doubt which branch he had been in as I not ever heard a profane word from him. The retired cop was silent the rest of the trip. Also explained his strong dislike for high water.

We all have pasts and when you stated you were in the Navy this past popped into my mind. TMI perhaps, but a happy memory.

English teacher?? Correct grammer only makes enemies. :-p

@parus

Okay, I have been to PT this morning-for my knee. Anyone w/ neuropathy can well imagine what this has done to all other parts of the anatomy as if neuropathy is not enough (:- p). I am 3 wks. into this. An effort to get prior insurance authorization for an injection and I was approved-that takes place on 8/10. Insurance had already approved 6 wks. of PT. Yup, I will finish out that 6 wks. too. I can be as stubborn as a hog on ice at times.

@johnbishop off the topic of “N”. The old cowboy I worked w/ in the early 70’s was in WWII. He never talked about it and never said which branch. He and I were a team and could rope and brand calves in the Spring that would have put rodeo hero’s to shame. When the weather warmed and we could work the higher altitudes we worked on Dude Ranch’s. His wife was 100% Cherokee and he was 1/2. The things I learned by watching.

We had taken a pack trip into the Bridger Wilderness and a retired NY cop was allowed to tag along for free. It was when this cop shoved me aside while the old cowboy (Oscar) and I were packing a horse and said, “This is man’s work!” No doubt which branch he had been in as I not ever heard a profane word from him. The retired cop was silent the rest of the trip. Also explained his strong dislike for high water.

We all have pasts and when you stated you were in the Navy this past popped into my mind. TMI perhaps, but a happy memory.

English teacher?? Correct grammer only makes enemies. :-p

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I have been suffering from Ulnar Neurpathy and Brain Shrinkage. Not able to work with tiredness throughout the day. Doctors prescribed only sedative tablets for sleep during night times which effects in day time also. CSVD problem also. None of the doctors in India feel the difficulty faced by these problems. Kindly advice. Venkatesan.

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