Living with Neuropathy - Welcome to the group

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

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.

@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.

@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.

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

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

@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.

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?.