Neuropathy - seeking the truth!

04-23-2004, 05:46 PM

I usually post on the Diabetes board - this message is posted there too... but I am hoping someone here may be able to help.

I am sooooo frustrated. I am trying to learn more about neuropathy and am reading opposing things that don't make sense. I believe I am experiencing symptoms of neuropathy but I am not sure.

On one hand, I have read that neuropathy is permanent nerve damage and that it is not reversible. On the other hand, I have read that the burning/tingling sensations associated with neuropathy can be a result of nerve regeneration or healing nerves. I have also read that neuropathy symptoms can temporarily worsen when you first bring your blood sugar under control (as is the case with me).

None of this makes sense to me. If its not reversable, what is healing/regenerating? What do they mean by "temporarily worsen" - for how long? What causes this? Will the symptoms go away?

I have had intermittant but daily burning in my feet that increases with activity and at night. This began about 5 weeks ago, approximately 5 weeks after my blood sugar levels were brought under control. The burning can be quite intense (like my feet are submerged in boiling hot water) and at other times it can be a mild tingling feeling in my feet and lower legs (more like a flushed feeling) accompanied by mild aching. More recently I have had a few incidences where my arms and hands feel mildly sunburned (but not nearly as bad or intense as the symptoms in my feet and legs)

I mentioned this to my doctor and he ran some basic nerve tests on my feet. He put a vibrating device on my toe and asked if I could feel it. Of course I could. Then he poked my feet with a light pin-like device, and of course I could feel that too. I explained to him that my feet are NOT numb - they burn!!! After those brief tests he said, "Nope, you nerves are fine!"

When I went to my chiropractor (for my neck/shoulder problems) I asked him about my burning feet - he said, absolutely it is neuropathy - he had no doubt.

So what is the truth about neuropathy? Can nerves heal or regenerate? If so, why am I reading that it is not reversable? Will the burning symptom go away on its own? If not, what can I do about it? Why is my doctor insisting that my nerves are fine based on the basic tests he did? I can't imagine having to experience this symptom every day for the rest of my life!

Any advice?

04-23-2004, 09:35 PM

Yeah, I have heard about some people who heal and fully recover with no residual effects, and there are some who only get worse. I guess it depends on the initial cause of the problem, the severity of the nerve damage, and your age and health condition may play factors too.

04-24-2004, 06:42 AM

Okay, so is there anyone here who has recovered or greatly improved? My symptoms came on rather suddenly, my doctor is not addressing this, and I am hoping that it is a temporary condition that will subside.

Is this wishful thinking? What are my chances? I need some hope here!!!

04-24-2004, 12:36 PM

Sometimes stress and anxiety will make it worse. What part of the foot and/or leg is it affecting you? Is it a burning sensation, tingling, electric shock type of pain, muscle cramp type of pain, etc?

Many doctors have no absolute answers or cure to this problem. They can only provide treatment in the form of medication. And, I think some can get rid of the problem via surgery or injecting alcohol into the infected nerve if the problem is too much for you. Some people opt for Chinese accupuncture and say it is effective. It all depends.

In the meantime, give it some rest, take some Vitamin B pills (esp. B-12 is known to heal nerves), do some massages on the leg/foot, using heating/cooling pads. Use magnet therapy if you like. I wore magnetic soles in my shoes and the burning sensations under the arch of my foot went away in one week, although I still experience these strange pains and aches in my leg and thigh.

04-24-2004, 02:31 PM

For me, it is an intense burning sensation, like my feet are submerged in hot water. It is not there in the morning, but seems to act up with any activity - running doing household chores, grocery shopping, etc. It seems to be worse in the evening, but I attribute that to having been more active during the day.

Sometimes, the sensation is less, more like a mild tingling with aches in the lower legs, but usually it is the intense burning in both feet. It is always both, never just one, and it is always the same intensity in both feet. And my feet are not hot or even warm to the touch, they are normal temperature.
Also, it seems like if I rub them, the sensation lessens, but as soon as I stop it comes back.

Also, as I mentioned, this only began about 5 weeks ago - completely out of the blue. Its not like it has been gradually increasing. Is this typically of Neuropathy? I always thought Neuropathy was a gradual progression, not a sudden onset.

04-24-2004, 02:35 PM

I forgot to mention, yes, I have been VERY stressed and anxious over my health problems in the past 6 weeks. I have been quite sick - my body is struggling to adjust to some major changes - both thyroid and blood sugar related.

Additionally, back in February I started a rigorous walking regimin, worked up to 2 miles per day (from being completely sedentary) but when I got sick in mid-March I had to stop walking. It was shortly after that when these symptoms in my feet began.

04-26-2004, 05:11 AM

Welcome to neuropathy. It can wax and waine, come and go and generally make a pain of itself. Mines runs from March to October with May to October the worst months - so much so that I can't walk on my feet at all and use a wheelchair. I thought it might be diet last year when the pain went away in October, but nope, so this year it's back. It gets worse every time the temperature gets above 80 for more than two days. Eventually it will stop getting better. During the winter I'm totally sypmtom free. My new doc says I should move up North. We laugh. The good part is what she's doing to find the cause.

Previously I had the same reaction as you're having from your doctors. I've seen two neurologists, a pain management guy an internal medicine guy and two GP's. Basically they all said, "Live with it." Wrong answer.

I've just had my first visit at a neurology clinic at a medical school. I've seen several doctors posting on neurology messageboards that this is the kind of place to go for finding out the cause. These folks are being very thorough and I'm thrilled. I'll start a thread about all the tests they're running. I've had this for two years and any neurologist could run these tests. I don't understand why they refused to try to find the cause.

It's not worth fretting about. It's going to do whatever it's going to do. The best advice I can offer is to take control, do all you can to find someone to help you focus on the cause; but don't worry yourself sick over it. When my feet hurt too much to wear anything or walk then I use a wheelchair. So what? It's a hassle, it hurts, but I keep focused on finding the cause (and thereby, the cure).

Hang in there. This is a great place to develop friendships and get ideas and information. Keep posting.

P.S.
Last year they discovered some loss of reflex and delayed response. That's when they stick you with a pin and you don't feel it for a minute or so. Over the winter the nerves recovered, so yes, nerves can heal.

04-26-2004, 05:22 PM

Seems to be different for everyone. I recently had surgery and am in the recovery stage. Was pain free for 1 1/2 months but the burning is now back and Im told its my nerves regenerating. If you havent done so, I suggest reading anything you can find by Dr Dellon and his associates. Here are some starters:

[url]http://www.sensorymanagement.com/journal.html[/url]
[url]http://www.dellonipns.com/[/url]
[url]http://www.dellon.com/[/url]

Good luck!

04-27-2004, 04:10 AM

I just read those articles and it is fascinating. Did you have one of the surgeries described in the articles? If so who did it?

04-27-2004, 04:22 AM

Yes - The PN surgery. Dr Dellon perfromed the proceedure.
Since I had to pay for it myself, I made sure I had the best.

04-27-2004, 06:14 AM

Does insurance plans not cover this type of procedure?

04-27-2004, 09:04 AM

Some do - some dont. Im with BlueCross HMO and they require pre-approval for out-of-network services. It is not a well known proceedure and seems most Dr's are clueless about PN. My request went before 2 different review boards and was denied by both for "bogus" reasons. I am fighting them but just couldnt wait any longer.

It takes quite a while to know if the surgery worked or not but if ends up working for me, I'll have the other foot done whether insurance pays for it or not.

Dr Dellon's office manager told me that they have people fly in from all over the country and have never run into a problem with insurance. He has offices in Tucson, AZ and Baltimore.

On the dellonipns.com site you can search for surgeons trained by Dr. Dellon - there might be one in your area.

03-17-2007, 01:33 AM

There are many different types of symptoms. BUT the most obvious is a numb feeling that feels like a mask or glove over your feet. There are peripheal just affecting the feet and hands or some in different parts of the body depending on the nerve damage. The mylin covering is usually destroyed allowing the nerves to be confused and the brain through the spinal chord sends wrong signals of pain. If the cause is diabetes then if the disease is brought under control and the nerves can regrow the protective sheath (mylin) and the nerves can regenerate. Sometimes if nerves are temporarily damaged they can tingle. Usually if you have the burning and stabbing pains without the numb feeling then it is a sign of catastrophic injury to the nerves maybe from the diabetes. If the nerves are left in a damaged state too long or if the disease is like mine heridtary and no cure exists then the nerves will not regenerate and remain damaged causing pain burning stabbing and eventually numbness. The nerves have many structures and like me can have the burning stabbing pain and be numb and at the same time the smaller bundles can be hyper-sensitive so just walking on oatmeal on the floor feels like sharp glass. So I still have trouble coming to grips with the fact that I can't feel the doctor poke me with a needle but can go through the roof with pain by stepping on sawdust barefoot weird but true. The only way to disgnose the nerve disease for sure is by a (Nerve Conductivity Test) which is pretty painful but it shows what kind of current can be passed by the nerves and the results tell their condition. Hope this was helpful

04-16-2007, 11:10 PM

Quote:

Originally Posted by jdimassimo

I usually post on the Diabetes board - this message is posted there too... but I am hoping someone here may be able to help.

I am sooooo frustrated. I am trying to learn more about neuropathy and am reading opposing things that don't make sense. I believe I am experiencing symptoms of neuropathy but I am not sure.

On one hand, I have read that neuropathy is permanent nerve damage and that it is not reversible. On the other hand, I have read that the burning/tingling sensations associated with neuropathy can be a result of nerve regeneration or healing nerves. I have also read that neuropathy symptoms can temporarily worsen when you first bring your blood sugar under control (as is the case with me).

None of this makes sense to me. If its not reversable, what is healing/regenerating? What do they mean by "temporarily worsen" - for how long? What causes this? Will the symptoms go away?

I have had intermittant but daily burning in my feet that increases with activity and at night. This began about 5 weeks ago, approximately 5 weeks after my blood sugar levels were brought under control. The burning can be quite intense (like my feet are submerged in boiling hot water) and at other times it can be a mild tingling feeling in my feet and lower legs (more like a flushed feeling) accompanied by mild aching. More recently I have had a few incidences where my arms and hands feel mildly sunburned (but not nearly as bad or intense as the symptoms in my feet and legs)

I mentioned this to my doctor and he ran some basic nerve tests on my feet. He put a vibrating device on my toe and asked if I could feel it. Of course I could. Then he poked my feet with a light pin-like device, and of course I could feel that too. I explained to him that my feet are NOT numb - they burn!!! After those brief tests he said, "Nope, you nerves are fine!"

When I went to my chiropractor (for my neck/shoulder problems) I asked him about my burning feet - he said, absolutely it is neuropathy - he had no doubt.

So what is the truth about neuropathy? Can nerves heal or regenerate? If so, why am I reading that it is not reversable? Will the burning symptom go away on its own? If not, what can I do about it? Why is my doctor insisting that my nerves are fine based on the basic tests he did? I can't imagine having to experience this symptom every day for the rest of my life!

Any advice?

04-16-2007, 11:13 PM

I have severely advanced neuropathy and was told the pain occurs until the nerves die. And it is not reversible. Believe me, I have been treated for this for at least 12 years by many, many doctors. My only concern now is pain control. Good luck.

Neuropathy - seeking the truth!

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