Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@materk

I have been “dealing”‘ with peripheral neuropathy for several years. Mostly increasing numbness , extending from feet up past knees. So far very little pain. I get Massage to feet and legs weekly and tak a lot of Shaklee food supplements. Also am 95 years old and healthy except for the Neuropathy.

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Thanks for sharing your experience, John @johnbroward

Jim

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@mikween

Anyone that has pain with their neuropathy should try something called Ketamine Therapy. It is an IV that they use. It has worked for me so far.
They recommended 4 hour treatments. One day 2 hours and the next day they doubled the dosage for another 2 hours. It is very expensive $700 for 2 hours. But, it has been worth it for me to not have the pain all the time. Look it up.

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I will definitely look it up, thanks

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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.

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@clayhere Hi, Clay. Welcome to the way things really can be. Yes, you have a lot of issues, but I wonder about them. That is, it may well be that you are not having an attack, but something else. I learned the hard way not to be too quick about diagnosing myself. What you have could be spleen, pancreas, or pericardia. Any kind of inflammation will cause this pain. the pericardia might bring in the drop in blood pressure, and the pains in the shoulders, etc. Keep pushing your doctors, and test everything you two can think of. WBC, protein, nerve signals, etc. But hang in there. It has taken me decades to get anywhere near the truth

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@clayhere

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.

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Hello @clayhere, welcome to Connect. I’m glad you found us and thank you for sharing. You have a lot going on. While your post is somewhat different you are not alone. I’m sure other Connect members share some autonomic neuropathy symptoms and I’m hoping they will be able to share what has helped them.

You mentioned you had to go to the Mayo Clinic in Florida to get answers. Can you share what you found out with us?

It is important to keep asking questions and pushing your doctors for answers. You are your best advocate and the more you can learn about what’s going on with your health, the better chance you have of improving your quality of life. Hoping that you will find something that helps you soon.

John

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@clayhere

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.

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Hello John, My problems started July 29th 2016. Everything came together and stopped me. Thought I was having a heart attack. The Dr did a stress test and found nothing. Then August 2nd 2016 I couldn’t take it anymore, went to the ER the same Dr did a heart cath and found 95% blockage in my left artery of my heart. They put in two stents. They thought that would take care of the symptoms. Aug 7th 2016 I was back at his office with the same symptoms. I have had all kinds of test , Ct scan, xrays, upper GI, checked gal bladder, spleen, another heart cath, lung Dr said lungs were in great shape, two endoscopy’s , MRI on neck and up spine, nerve induction test, esophagus test, all showed normal, after trying a dozen medications, My family Dr kept saying that he felt like it was a neuropathy he just didn’t know which one. He said Somatic Neuropathy so I did some research and that’s how I found Mayo Clinic, They did several test and MRI on my brain, They found Small Fiber peripheral neuropathy I was informed 10/12/2017. From what I can find it is rare.

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@oldkarl

@clayhere Hi, Clay. Welcome to the way things really can be. Yes, you have a lot of issues, but I wonder about them. That is, it may well be that you are not having an attack, but something else. I learned the hard way not to be too quick about diagnosing myself. What you have could be spleen, pancreas, or pericardia. Any kind of inflammation will cause this pain. the pericardia might bring in the drop in blood pressure, and the pains in the shoulders, etc. Keep pushing your doctors, and test everything you two can think of. WBC, protein, nerve signals, etc. But hang in there. It has taken me decades to get anywhere near the truth

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Hello old Karl, I have had many test but they showed normal. I found my answer at Mayo in Florida. After they did several test and found small fiber peripheral neuropathy, from what I can find on it, it is a rare condition, I was told on 10/12/2017. The nerves that have damage control the autonomic area.

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@clayhere

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.

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Hi @clayhere, I have idiopathic small fiber peripheral neuropathy but I’m not so sure it’s rare. Here is the best easy to understand explanation of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:

I think mine may be genetic as I recently found out my cousin who is a few years older than me also has idiopathic SFPN. Mine started really gradually in my toes and then worked it’s way up to just below the knees. I only have numbness with mine and had not gotten a diagnosis until last year. Mostly due to my doctor when I started asking about the numbness telling me it was probably nerve damage and that they could run some tests to determine if that’s what it was. When I asked him if they find out it’s nerve damage what can they do about it. He told me nothing and I ignored it for about 20 years. I posted my complete story in another post if you want more info:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985
It sounds like you have been through the wringer for all the tests. Do you have any numbness or pain in the extremities? My Mayo neurologist had told me they usually see it first in the hands and feet. Then over time it will gradually keep getting worse and affects the motor nerves. I have zero medical knowledge or training but I started searching for answers when he told me to let him no if it gets worse since there was nothing that would help with the numbness. That started my search and eventually brought me to Connect. I would keep doing what you are doing and learning as much as you can about your health condition. That will help you relate to the doctor and ask better questions. If you are like me, I would also write down the questions I want to ask and take them with me to the appointments – that’s because I sometimes forget when the pressure is on.

Hoping you find some answers.

John

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@clayhere

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.

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Hello John, My right hand and arm would tingle and go numb also my shoulder was hurting, that was several years ago, the Drs couldn’t find anything. It has progressed now both hands have tingling along with my groin, I get some tingling in my upper legs. The neuropathy is affecting my heart, blood pressure, feeling to touch, hearing, eyes, bladder, bowels. I can not stand anything on my chest it feels like I am being choked, that is what confuses the Drs. The left side of my body has a different pin pick feeling than the right side. The pressure on my chest gets worse with activity to a point that I feel I am choking. It has been a struggle to get out and stay busy.

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@clayhere

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.

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@clayhere, have your doctors offered any kind of treatment to try and help your condition? Since your problems started suddenly a year ago in July, do you think it could be related to diet or something missing in the diet? I did some searching on Google Scholar (https://scholar.google.com/) which can sometimes help you find some research related info and it seems to show diabetes induced autonomic neuropathy with similar symptoms. Here’s the search results I found using the phrase “autonomic neuropathy treatment”
https://scholar.google.com/scholar?as_vis=1&q=autonomic+neuropathy+treatment&hl=en&as_sdt=1,24&as_ylo=2017
John

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