Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

I never realized just how fortunate I have been when it comes to my health insurance. My husband was in the Navy when I was diagnosed with Stage 4 Lymphoma. When the doctor said he wanted to do another surgery, the third in one month, I said I just could not do it unless I had someone with me. My husband was out to sea and would not be back for another month, my family was half way across the United States from me. By the next time I saw the doctor my mother was arriving the next day, so the doctor said "Good, I'll schedule your surgery." I had three surgeries in one month.

Within three years my husband was out of the Navy, I was working with insurance and had to fight just about everyone to get my chemo paid for, even though they said they would pay for it. Before we were divorced my husband got a job with insurance that had a bad reputation, but I said OK put me on it. By the end of the year his company was going to drop it and pick up another insurance. I could either pay for it myself or go with the new company. I had to have surgery in the short time I was with Northern California Kaiser Permanente and fell in love and said I would pay for it. The doctors are all salaried and everything is on one campus, there are multiple campuses in Northern CA all now on the same computer system so if one campus does not have what I need I can go to another campus and they can pull up my record and know more about me than I know.

It would be wonderful if everyone could have the same type of insurance that I have, no doctor who you see in the hospital is "out of plan". If you do not like your doctor you can see someone else and going to another campus is okay. I am seen on three different campuses, one is an hour away but that is where the specialist is so I have to go there for my annual check up. Kaiser does not do cosmetic surgery, except for medical reasons, that you have to go off campus for and pay for yourself.

mlmcg

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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Hi, I have been dealing with it for the last 5 years.

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@paulfj067

Hi, I have been dealing with it for the last 5 years.

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Hello @paulfj067 — Welcome to Connect. I'm glad you found us. I have idiopathic small fiber PN but only have numbness with mine in the feet to just above the ankles. I've been dealing with PN for 20+ years. If you have any questions about how to do something on Connect, there is a great Get Started on Connect guide link at the bottom of each page on Connect in the left column.

@paulfj067 can you share a little more about your peripheral neuropathy and if you have found any treatments that work for you?

John

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Has anyone tried acupuncture for neuropathy.. I mainly have numbness in feet and ankles like you do John.

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@suzylulu

Has anyone tried acupuncture for neuropathy.. I mainly have numbness in feet and ankles like you do John.

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Hi @suzylulu — I have not tried acupuncture but I have tried a few different feedback devices and really did not see any benefit. I'm open to any alternative type treatments that might work to help with the numbness but so far have found nothing that makes it entirely get back to normal. I do take some over the counter supplements that have helped stopped the progression of the PN in my legs but that's kind of subjective on my part as I've not had any additional EMGs or other tests to prove the nerve test results are better than when I was diagnosed.

Hope some others that have tried acupuncture can share their experience here.

John

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@johnbishop

Hi @suzylulu — I have not tried acupuncture but I have tried a few different feedback devices and really did not see any benefit. I'm open to any alternative type treatments that might work to help with the numbness but so far have found nothing that makes it entirely get back to normal. I do take some over the counter supplements that have helped stopped the progression of the PN in my legs but that's kind of subjective on my part as I've not had any additional EMGs or other tests to prove the nerve test results are better than when I was diagnosed.

Hope some others that have tried acupuncture can share their experience here.

John

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Thanks, John. I have made an appointment and will let you know.

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@suzylulu

Has anyone tried acupuncture for neuropathy.. I mainly have numbness in feet and ankles like you do John.

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Hi @suzylulu, I have found acupuncture to be the most effective treatment so far for my neuropathy symptoms. It hasn't eliminated them but it has made a difference in their severity/frequency, and doesn't blindside you with side effects like so many prescription meds. The down side is the potential expense and fitting these appointments in along with all the others… am currently in between sessions but look forward to getting back to it again soon. Good luck!

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I had fifteen sessions of acupuncture with a Chinese MD and had no results from them. It was an interesting procedure and he had great credentials but no results. My insurance paid 80% of the costs. I have also recently tried medical marijuana under the direction of a pharmaceutical company as is the method in my state, Minnesota. Unfortunately side effects occurred before I had any pain relief from the PN. The company has other levels of cannabis that I could try but after the many meds I have tried and the above procedures I have decided to live with my problem. I have just purchased a power chair (scooter type) which makes it easier for me to be about the senior residence where I live. Medicare does pay for such a chair but I did not qualify but it is worth checking into.

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@johnbishop

Hello @paulfj067 — Welcome to Connect. I'm glad you found us. I have idiopathic small fiber PN but only have numbness with mine in the feet to just above the ankles. I've been dealing with PN for 20+ years. If you have any questions about how to do something on Connect, there is a great Get Started on Connect guide link at the bottom of each page on Connect in the left column.

@paulfj067 can you share a little more about your peripheral neuropathy and if you have found any treatments that work for you?

John

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Good Morning from Texas. Beautiful morning. Please take what I say not as bragging or complaining. I've certainly done more than my share of that. I have dealt with neuropothy for almost 20+ years. It started in the bottom of my feet, hot and burning sensation and over the years it has creeped up to my knees and in my hands. I started taking gabapentin 200mg once a day,and have advanced to 800mg +50mg of Tramedol every six hrs. I have tried not taking the tramedol, and have found nothing OTC that works as well. I recently have tried to lessen the amount of gabapentin and again I paid dearly for it. The pain is almost unbearable. I have severe spinal stenosis and have a spine stimulator and it helps a great deal. I have a pace maker, heart surgery, have had 2 neck surgeries due to bone spurs. so pain has been a part of my everyday lving. And I am so grateful to be ALIVE!
It is so difficult to believe that our Medical institutions have not come up with better ways to treat this PN. I have talked to, emailed, read on this site about others who are suffering with this and the number seems to just keep growing. Is it our environment, eating,living habits that have created this? In this day of medical breaktroughs there has to be an answer.
Anyone, please share with me.
Peace that passes understanding to all……JJ

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@johnbishop

Hi @suzylulu — I have not tried acupuncture but I have tried a few different feedback devices and really did not see any benefit. I'm open to any alternative type treatments that might work to help with the numbness but so far have found nothing that makes it entirely get back to normal. I do take some over the counter supplements that have helped stopped the progression of the PN in my legs but that's kind of subjective on my part as I've not had any additional EMGs or other tests to prove the nerve test results are better than when I was diagnosed.

Hope some others that have tried acupuncture can share their experience here.

John

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Hello John I have yet to hear anybody with the same symptoms I have with PN. I have heart attack like symptoms and no body can explain it or find the cause. It has taken a toll on me mentally and physically. I have tried a dozen different meds but nothing has helped except the side effects has caused a cataract in my eye. I have even tried a spine stimulator with no relief. Just the smallest activity causes the symptoms to flare up. This has been going on for two yrs now.. My cardiologist says I am unique because standard testing does not work on me, even my family Dr is at a loss I have seen neurologist at Mayo and here as well. Every Dr is puzzled.

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Hi @johnbishop – Do you know of anyone in the group who is dealing with blood pressure swings as part of their neuropathy? I go from low BP in the mornings and after eating to high BP if I sit for too long, then back to low BP upon standing… tried various meds but they swing the levels too far in both directions. Had to resort to having Cheezits for breakfast this morning (ugh) just so I could stand long enough to get ready for work… Do you know what's worked for other people?

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@elizabej

Hi @johnbishop – Do you know of anyone in the group who is dealing with blood pressure swings as part of their neuropathy? I go from low BP in the mornings and after eating to high BP if I sit for too long, then back to low BP upon standing… tried various meds but they swing the levels too far in both directions. Had to resort to having Cheezits for breakfast this morning (ugh) just so I could stand long enough to get ready for work… Do you know what's worked for other people?

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Hello @elizabej — I did a quick search of Connect but was not able to find a member post that mentioned blood pressure swings with their neuropathy.

Have you discussed the blood pressure swings with your doctor?

I have no medical training or background but I think that it could be a symptom of autonomic nerve damage according to NIH
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

Hopefully one of our members with similar symptoms can offer some suggestions.

John

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@johnbishop

Hello @elizabej — I did a quick search of Connect but was not able to find a member post that mentioned blood pressure swings with their neuropathy.

Have you discussed the blood pressure swings with your doctor?

I have no medical training or background but I think that it could be a symptom of autonomic nerve damage according to NIH
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

Hopefully one of our members with similar symptoms can offer some suggestions.

John

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@elizabej and @johnbishop Just a little input. My bp ranges from 80/40 to 180/100. And I agree. Autonomic nerve damage. Same with GL swings.

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@clayhere

Hello John I have yet to hear anybody with the same symptoms I have with PN. I have heart attack like symptoms and no body can explain it or find the cause. It has taken a toll on me mentally and physically. I have tried a dozen different meds but nothing has helped except the side effects has caused a cataract in my eye. I have even tried a spine stimulator with no relief. Just the smallest activity causes the symptoms to flare up. This has been going on for two yrs now.. My cardiologist says I am unique because standard testing does not work on me, even my family Dr is at a loss I have seen neurologist at Mayo and here as well. Every Dr is puzzled.

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Hi @clayhere — I'm sure it's frustrating for you that you can't get any answers. Did the Mayo neurologist provide any diagnosis?

I'm also tagging a member who has shared a lot of great information on different treatments to see if they can offer any suggestions.
Chris @artscaping do you have any suggestions for @clayhere ?

John

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@clayhere

Hello John I have yet to hear anybody with the same symptoms I have with PN. I have heart attack like symptoms and no body can explain it or find the cause. It has taken a toll on me mentally and physically. I have tried a dozen different meds but nothing has helped except the side effects has caused a cataract in my eye. I have even tried a spine stimulator with no relief. Just the smallest activity causes the symptoms to flare up. This has been going on for two yrs now.. My cardiologist says I am unique because standard testing does not work on me, even my family Dr is at a loss I have seen neurologist at Mayo and here as well. Every Dr is puzzled.

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Hello Clay,

I've had symptoms that made me think I had a heart problem, but I don't. What I do have is tightness in my chest with thoracic outlet syndrome that causes my neck to be tight, and the position of my head and neck, can trigger a muscle spasm into the front of my chest near the sternum. I've done that with a forward and turned head position causing an instant spasm, and I've been able to massage out the spasm and stop the pain. TOS has caused my ribs to twist out of shape which is painful where ribs connect with the sternum. It's like a straight jacket that twists my chest out of shape and it even caused a functional scoliosis, but that is normal again after long term physical therapy. I also had a ruptured cervical disc that was contributing to kicking up the muscle spasms, and I am close to 2 years post-op from surgery at Mayo for my spine which helped a lot of the issues. Stress can also trigger this when muscle tighten, and with TOS, posture is very important. What I think happens is that the nerves that control the heart and lungs are passing through overly tight muscles in the neck and chest and triggering this. The TOS is worse on one side, and has prevented me from breathing properly when one side doesn't expand enough, and then it can trap phlegm, and I've had repeating chest infections on that side, but without normal symptoms, so it made it hard for me to distinguish this from asthma and allergies that I also have, so if I don't get enough air, my heart rate goes up, and can be over 100 at rest. A course of antibiotics resolved this and returned my heart rate to normal again. I've worked on proper mechanics with breathing in physical therapy. I take allergy shots regularly to control this, and I am better at recognizing when I'm getting an infection and treat it right away and I had to clear phlegm when I feel it. I'm not sure what activity is triggering your symptoms. For me, if I have the chest infection, I will notice my heart rate go up when climbing stairs or a slight exertion. Twenty years ago, I had a whiplash that probably caused the spine issues and may be the reason that the TOS is worse on one side because my head was turned to the left during the impact. The physical therapist who has helped me the most is a traditional therapist who also does myofascial release work to loosen the tight fascia that binds the body together. For example, I had a "scolosis" that I could not untwist until the tissue allowed that movement and I remember the day that every thoracic vertebrae reset itself into a normal position when I rolled on a device in therapy right after my PT had released tissue. That gave me instant relief from the fatigue that was always there when it was out of alignment. This was prior to my neck surgery, and I wouldn't be doing this after spine surgery while wearing a neck brace or without my surgeon's blessing. I've also had improvement in a bulging thoracic disc seen on my MRIs after therapy realigned my body, and I no longer feel the stiffness at that level in my spine and it moves better. You can look for information on the John Barnes methods of myofascial release as the website has a lot of information. It is a hands on therapy like kneading bread dough in slow motion, so the therapist holds the stretch with her hands until the fascia releases. I've done this for a few years and it has helped a lot. I did have a setback because of recovering from spine surgery, but I am making good progress again. TOS can easily be missed by doctors because it is hardly mentioned in medical schools. Mayo can diagnose and treat it and that's why I came here because I had that along with the spine problems and some unusual symptoms that several spine surgeons missed, and I was having trouble finding a surgeon who would help me. I came to Mayo, and it changed my life.

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