Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@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.

Jump to this post

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.

@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

Jump to this post

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.

@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.

Jump to this post

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

@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.

Jump to this post

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.

@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.

Jump to this post

@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

@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.

Jump to this post

Hi, @clayhere – I learned recently that I have small fiber neuropathy, as well. I’ve known I have peripheral neuropathy for a few years, but a puncture biopsy narrowed it down to small fiber. I haven’t yet figured out what that means. Maybe John @johnbishop would be able to recommend some articles that would help us better understand the disease. I had a spinal cord stimulator implant in June to treat the burning pain in my feet. It has helped a lot, but the pain hasn’t disappeared. I’m seeing the technician next week to make adjustments to the stimulator so it will hopefully extend the treatment to my toes. The neurologist also told me a couple of weeks ago that I have myelin deterioration, and that’s another thing I need him to explain to me. I don’t think that anyone can predict the progression of neuropathy, which is adding to my anxiety disorder level.

Has any treatment been suggested? Will you be seeing your doctor again soon? Let us know how things go.

Jim

@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.

Jump to this post

Hi Jim (@jimhd) and @clayhere – let me preface this by saying I have no medical training or background. All of the information I have learned is from doing my own research on what is available online. With that said, from what I understand from various information sources I’ve read is that neuropathy is caused by damaged nerves. The damage can be caused by diabetes, chemotherapy, accidents, surgery, etc. The damage equates to the myelin sheath protecting the nerves is no longer protecting the nerves – it’s gone or damaged. This is sort of like an electrical wire with no insulation and the electricity is free to roam wherever the bare wire touches something. Treatments currently are aimed at making the pain go away with drugs and medications that block the pain signals at the brain (my words) and a lot of those drugs were originally developed to prevent seizures so they mess with your brain and come with a lot of not so nice side effects. Most of my research and inspiration has come from reading Dr. Terry Wahls story and how she was able to reverse some of the debilitating symptoms of MS through changing her diet so that she was addressing what was going on in her body using cellular nutrition (IMHO). Here is her story – http://terrywahls.com/about/about-terry-wahls/.

Here are some articles I’ve found that may help:

Myelin Function – Easier to read – https://www.news-medical.net/health/Myelin-Function.aspx
NCBI Resources on The Myelin Sheath – https://www.ncbi.nlm.nih.gov/books/NBK27954/

Plymouth University – New research may pave the way for peripheral nerve damage repair
https://www.plymouth.ac.uk/news/new-research-may-pave-the-way-for-peripheral-nerve-damage-repair

UCSD “Blocking Neuron Signaling Pathway May Lead to New Treatments For Peripheral Neuropathy.”
NeuroscienceNews, 17 January 2017:
http://neurosciencenews.com/peripheral-neuropathy-signaling-pathway-5958/

Hoping for a pain free day (numbness too!) for all of you out there. Keep looking for answers and keep asking questions to get answers from your medical team/doctors.

John

@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.

Jump to this post

Hello John, My symptoms started several yrs ago. They came to surface together July of last year. The Dr told to me to take B12. I am taking 2000 mg a day. They also to me its very important to keep my appointments Nov 13. I am seeing a pain Dr and Neurologist. I have turned down pain meds I don’t want to go that route unless I have too.

@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.

Jump to this post

Hello Jim All this is confusing to me as well. My neuropathy has been different. Mine is not bothering my feet much, no tingling or burning. Mine is in my upper body. From the research I have found is that the neuropathy progress’s but I don’t know what rate. The Dr told me to take B12 2000 mg a day and told me is very important to keep my appointments Nov 13th. I am seeing a pain Dr, and Neurologist.

@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.

Jump to this post

Hi Clay, I also take B12 along with my other supplements for my PN. I take the liquid version because it’s supposed to be absorbed better into the system. I really try to avoid drugs if possible too. I do have to take blood pressure pills and also on prednisone for my polymyalgia rheumatica but I’m trying to taper off of it now to see if the PMR pain goes away.

John

@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.

Jump to this post

@johnbishop

Thank you, John, for pointing out the articles, which I read. It gives me one more thing to discuss with the neurologist on the 7th. My sister has MS, and was just prescribed Biotin (vitamin B7) 300mg daily. It’s also been used to treat neuropathy.

Jim

@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.

Jump to this post

@clayhere – I have appointments with the neurologist and the pain specialist on the 7th. I hope they have time to answer my questions.

Jim

@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.

Jump to this post

Hi Jim, I take 2×10,000 mcg caps of Biotin every day at noon. I have to take it at noon because it would negatively impact the R-ALA I take in the morning and evening with my other PN supplements.

John

@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.

Jump to this post

Wow! That’s a lot. But I read that there’s no risk of overdose by taking too much. I guess you’re proof of that.

Jim

@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

Jump to this post

@clayhere Hi, friend! I guess a good sense of humor is the most important part of recovery or even staying alive. Yesterday I was putting on my compression sox and broke or dislocated my pinkie toe. I did not feel anything, but I heard a POP, and the toe was off at a 90 degree to the other toes. Today the whole area of the toe and outside area of the ball are purple and blue. RATS! First bone I have ever broken, apart from the bone around my nose. With this stuff, I hear that broken bones are rather the norm.

Please login or register to post a reply.