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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

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

srey | @srey | Mar 9, 2019
In reply to @elained "Dear Ronnie, If your neuropathy is caused by damage to your nerves in your spine, your..." + (show)
@elained

Dear Ronnie,

If your neuropathy is caused by damage to your nerves in your spine, your neurosurgeon/orthopedic surgeon will have some idea if your neuropathy can possibly be improved through more surgery.

I am now 77. My neuropathy (profound and disabling) is not caused by nerve damage in my spine. I did have a compressed nerve in 2016, and the pain was terrible (sciatic type pain down my right leg). A laminectomy on L3/4 completely and immediately stopped the pain, thank goodness.

CAUSE: According to my Immunologist, my neuropathy is caused by my Immune System attacking and damaging my nerves. The irony is that my Immune System is deficient and cannot protect me, adequately, from infection. I have IVIG every four weeks to make my immune system stronger so that I am no longer constantly sick with viral, bacterial and fungal infections.. I'm very grateful for that.

1. Driving. When I asked my neurologist, he said that is my decision, not his! I now wear braces on both legs, and can no longer drive. That is one of the worst losses I've experienced so far.

2 and 3. From my research it seems that most neuropathies cannot be stopped, cured or reversed. The exceptions occur when the neuropathy has a very specific cause that is identified early and then the cause can be eliminated. Early diagnosis is important because usually nerves that are damaged cannot be repaired.

4 and 5. My neuropathy began long before it was diagnosed in 2010. I was stumbling, tiring easily, unable to take long walks, unable to ride a bicycle, and experiencing leg cramping and tingling feet. But I was dealing with so many OTHER health issues that I thought the problems I listed above were just due to being 'out of shape'. By 2010 I had profound neuropathy from my knees down. MY LIMITATIONS: I have 20% of normal physical abilities. I wear leg braces (2016) and walk with a walker (2017.

6. I've had PT 3 times for my legs. It doesn't help, I'm sad to say.

7. Because my neuropathy is profound, the nerves no longer function at all. So I don't have pain in my legs. However, I also have small fiber neuropathy in my skin, which hurts, burns and stings. Even my face, lips, tongue and eyes lids are affected. I take 4200 mg of Gabapentin daily to control that pain.

8. My neuropathy progressed quickly, I think. It started in my legs around 2002 at the same time I had nerve damage to the system that supplies saliva and tears. I take a medication to give me some saliva and tears. I have nerve damage to my bladder (2006) which has no real treatment, skin (2015) for which I take gabapentin, and the latest diagnosis is gastrointestinal neuropathy affecting my esophagus (dysmotility and achalasia) and my small intestine which causes SIBO, small intestine bacterial overgrowth. Achalasia (failure of the valve at the bottom of the esophagus to open properly) is treated with outpatient surgery (which will have to be repeated since) and SIBO is treated with antibiotics and which will return eventually and have to be treated again.

9. Surgery will not help my neuropathy since the nerves are damaged by my Immune System.

My case is an extreme example of immune mediated neuropathy. However about 30% of people with autoimmune/immune disorders have some form of neuropathy.

Hope this helps.

Regards, ElaineD

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@elained Hi, I am a new member who is suffering with the symptoms of SNF and degenerative disc disease in my neck and back. I have had SNF symptoms for roughly three years and my specialist is waiting to get a brain scan to eliminate lupus. I am in Canada and the system can produce long wait times occasionally. I have been using b vitamins, Omega 3, and benfotiamine to help with the pain, along with tramadol. I am wondering if anyone here has used the system of nutritional support called The Protocol at, "the protocolworks.org". Also do you know of anyone who has developed SNF as a result of damaged cervical and back discs?

Thank you for your time.

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 9, 2019
In reply to @srey "Thank you John. My specialist is still investigating as I have severe disc degeneration in my..." + (show)
@srey

Thank you John. My specialist is still investigating as I have severe disc degeneration in my neck, but he also suspects SNF. I am wondering if you know whether anyone has developed SNF from this cause. Also do you know of anyone who follows the Protocol system of nutritional support for SNF. I am a big nutritional buff for health as opposed to drugs but as of now I do use tramadol for the worst numbness and tingling, especially at night.

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@srey, I take a protocol of supplements that I found on a closed Facedbook group. I posted my story and how I found the protocol and how it has helped me in an earlier post on Connect here - https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I have no medical training or background but I believe disc degeneration may cause some compression on nerves which in turn can cause forms of neuropathy/pain.

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srey | @srey | Mar 9, 2019

@johnbishop , do you have any nausea from any of the products? I tried to take ala quite some time ago and found it made me nauseous so I stopped.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 9, 2019
In reply to @srey "@johnbishop , do you have any nausea from any of the products? I tried to take..." + (show)
@srey

@johnbishop , do you have any nausea from any of the products? I tried to take ala quite some time ago and found it made me nauseous so I stopped.

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@srey, I have not been bothered by the R-ALA but I think their instructions say to ramp up with it by taking a lower dose capsule to start with or eat some food with it (part of a banana). The hemp oil caused me some concern when I first started but I'm able to gulp it down now. It took a little getting used to for me.

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1 reply
srey | @srey | Mar 9, 2019
In reply to @johnbishop "@srey, I have not been bothered by the R-ALA but I think their instructions say to..." + (show)
@johnbishop

@srey, I have not been bothered by the R-ALA but I think their instructions say to ramp up with it by taking a lower dose capsule to start with or eat some food with it (part of a banana). The hemp oil caused me some concern when I first started but I'm able to gulp it down now. It took a little getting used to for me.

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Thank you. I will try it again with the ramp up process. I have never used hemp oil but I will give it a try.

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elizabej | @elizabej | Mar 9, 2019
In reply to @elained "Hi steeldove, I did look into hand controls for driving when my neuropathy required me to..." + (show)
@elained

Hi steeldove,

I did look into hand controls for driving when my neuropathy required me to wear braces. The braces prevent foot drop, but have a steel plate under both feet. So I really can't bend my foot enough for the brakes.

THEN for about 18 months I had a condition that caused me to suddenly fall to the ground (syncope). That's when I had to stop driving. The condition was caused by a side effect of a drug I had taken for 6 years. I stopped taking the drug and I stopped collapsing. But I haven't gone back to driving because by now I need a walker, and would have to manage getting the walker in and out of the trunk. By then I would be exhausted!

Very few people have the level of disability that I have, thank goodness.

Regards, Elained

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Hi @elained - I too have had syncope, and fractured my kneecap in December. Can you tell me which drug it was a side effect of?.

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1 reply
steeldove | @steeldove | Mar 10, 2019
In reply to @elained "Hi steeldove, I did look into hand controls for driving when my neuropathy required me to..." + (show)
@elained

Hi steeldove,

I did look into hand controls for driving when my neuropathy required me to wear braces. The braces prevent foot drop, but have a steel plate under both feet. So I really can't bend my foot enough for the brakes.

THEN for about 18 months I had a condition that caused me to suddenly fall to the ground (syncope). That's when I had to stop driving. The condition was caused by a side effect of a drug I had taken for 6 years. I stopped taking the drug and I stopped collapsing. But I haven't gone back to driving because by now I need a walker, and would have to manage getting the walker in and out of the trunk. By then I would be exhausted!

Very few people have the level of disability that I have, thank goodness.

Regards, Elained

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@elained I guess it comes down to how motivated one is. I shall be 81 this month and I live alone, but maintaining my independence was my highest priority and a strong motivation for getting the Kempf hand controls, which now allow me to drive the 600 miles to my appointments at Mayo in Minnesota. I have a friend who is in his 50s and is wheelchair-bound being totally paralyzed from the waist down. He carts a collapsible wheelchair, a walker, and various pieces of equipment that enable him to get in and out of his Kempf-equipped van. Don't give up!

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kansasgal | @kansasgal | Mar 10, 2019
In reply to @johnbishop "@kansasgal, are you able to ask your doctor why your blood pressure is so high even..." + (show)
@johnbishop

@kansasgal, are you able to ask your doctor why your blood pressure is so high even taking your current BP medications? I would think they would be able to come up with some kind of treatment plan to lower it.

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Family doc added another BP med for me to take. Also, Neurologist has me cutting back on Cymbalta (duloxetine) and adding Lyrica. I was supposed to go to 1x a day every other day with the duloxetine, but I am so depressed that is NOT working for me, I ended up crying all day. Foot pain is like hammer hitting feet, vice on feet, nails being hammered into feet, burning and freezing feet. Pain is 24 hours a day and wakes me up at night, its been like this for about 6 years.

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qball2019 | @qball2019 | Mar 11, 2019

@kansas gal Sorry to hear about your suffering. Have you tried putting Lidocaine patches on your feet? There is also Arnicare gel or cream you could try. People swear by it. Maybe it would be worth a try? You can get Arnicare gel or cream on Amazon or at Wal Mart.

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elained | @elained | Mar 11, 2019
In reply to @elizabej "Hi @elained - I too have had syncope, and fractured my kneecap in December. Can you..." + (show)
@elizabej

Hi @elained - I too have had syncope, and fractured my kneecap in December. Can you tell me which drug it was a side effect of?.

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I developed myoclonus and syncope as a side effect of Cymbalta (duloxetine). It is a rare side effect, and I didn't develop it until after I had taken Cymbalta for SIX YEARS. It took 18 months before we figured out the culprit was Cymbalta.

The key is to check your meds for RARE SIDE EFFECTS on webmd or a similar site.

I had every test in the book, and saw a specialist in epilepsy (ruled out immediately), I even insisted on an MRI of my brain.

But it was the Cymbalta and then it turned out I couldn't take ANY SSRI or SNRI without myoclonus and syncope.

And I had taken Prozac beginning in 1988, and other similar drugs for almost 30 years before the problem began in 2016.

Best wishes in finding out what causing your syncope, elizabj.

Regards, ElaineD

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