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.

@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 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

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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 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

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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 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.

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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 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.

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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 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

REPLY
@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

REPLY
@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

REPLY
@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

REPLY
@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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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

REPLY
@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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@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.

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