Not exactly sure what I have Some say Neuropathy

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

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

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:

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

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

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.

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.

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