Diabetic Neuropathy Webinar

A couple of weeks ago, I saw a blog by Emily on TuDiabetes that mentioned a webinar on neuropathy. The webinar was targeted towards bloggers, so I thought I would sign up since I have neuropathy. I have to confess that I was on the skeptical side going into it because it was sponsored by a pharmaceutical company – Panlab. I would like to say that although I was disappointed in the webinar, I do agree that there needs to be more written about neuropathy.

The webinar started off with giving some statistics about neuropathy and amputations. After the webinar was over, I Googled some of the things talked about and they were using old statistics. I guess if you are trying to make a sales pitch, it is better to use the “look how bad this is” approach than the positive spin.

I prefer the positive spin. I have talked to fairly newly diagnosed people that are under the impression that they will definitely end up having a limb amputated. Treatment has come a long way since I was diagnosed in 1984. I was fortunate and diagnosed at a time when home glucose testing was possible. People diagnosed before me did not have glucose monitors and many of those people are walking around without complications. We did not know back then to test blood sugar after a meal. We did not have a CGMS to monitor our blood sugar 24 hours a day and alert us to problems. We now have insulin that works faster and is more stable. Some people are able to fine tune their control with the use of an insulin pump. We know how to adjust our insulin to match the foods we eat. Most of all, we have the DOC to learn about the stuff that our doctors don’t have time to tell us.

Besides better treatment options for diabetes, wound care has come a long way. My foot infection started in 2005 and I had the big surgery to save my leg in 2006. I was told had I had my infection only a few years before, I would have definitely lost my leg. There are more wound centers open around the country and doctors specializing in wound care. Having a wound today is very different than it was even 10 years ago.

One of the things discussed in the webinar was diagnosing neuropathy. I almost hung up at that point. The person doing the webinar said that a patient would present to their PCP with numbness and pain in their feet. The PCP would suspect neuropathy and refer them to a neurologist. The neurologist would then do a nerve conduction velocity test. That particular test will not pick up beginning stages of neuropathy so the neurologist would then send the patient back to their PCP. The report would state that the patient does not have neuropathy and the neurologist doesn’t know where it is coming from. I have called several doctors idiots, but I find it very hard to believe that a neurologist would have trouble diagnosing neuropathy in a diabetic patient.

The other thing I had an issue with was the presenter stated that neuropathy was caused by bad circulation. I know that is not true because I actually have very good circulation in my feet. I have had several doctors tell me that the problems I have had would be much worse if my circulation was not good. Seeing as how I lost part of the bone in my foot, the problems I have had were not exactly minor ones. I have zero feeling in my feet. When I was going thru the foot infection stuff, my doctor put stitches in my foot trying to force the wound shut and he did not have to numb my foot at all. In my case, circulation has nothing to do with neuropathy.

I thought I would copy a section from the NIH website discussing neuropathy. As you can see, poor circulation is one of the causes but certainly not the only cause.

http://diabetes.niddk.nih.gov/dm/pubs/neuropathies/#cause

What causes diabetic neuropathies?

The causes are probably different for different types of diabetic neuropathy. Researchers are studying how prolonged exposure to high blood glucose causes nerve damage. Nerve damage is likely due to a combination of factors:

• metabolic factors, such as high blood glucose, long duration of diabetes, abnormal blood fat levels, and possibly low levels of insulin

• neurovascular factors, leading to damage to the blood vessels that carry oxygen and nutrients to nerves

• autoimmune factors that cause inflammation in nerves

• mechanical injury to nerves, such as carpal tunnel syndrome

• inherited traits that increase susceptibility to nerve disease

• lifestyle factors, such as smoking or alcohol use

Panlab’s product that they were promoting is actually classed as a medical food – Metanx. I had never heard of Metanx until I Googled Panlab before the webinar to see what drugs they sold. I read their website and also Googled it to find out more. Apparently, Metanx is actually a combination of B vitamins. According to the Panlab website, 50% of people are unable to fully convert folic acid. Metanx is apparently already in the “converted” form. Metanx helps improve circulation – Vitamin B does help with circulation.

I found that interesting because years ago when I first started having problems with neuropathy, one of my cousins had a job proofreading medical textbooks. She read about Vitamin B being helpful for neuropathy so I went out and bought some Vitamin B – it really does help with the pain. Once I started getting on the internet and reading about neuropathy, I also learned about Benfotiamine – Benfotiamine helps with neuropathy and is also Vitamin B.

Last summer, I had my B levels checked and was told by the doctor mine were on the low side and I should add Vitamin B in. After I got my copy of the labs, I found out that my levels were actually high. Before I went out and bought Vitamin B, I wanted to try to find out what the optimal levels should be so did some reading on Vitamin B. I read that Vitamin B is hard for our bodies to absorb so it is actually better to get that in liquid form.

Too much Vitamin B can also cause problems so please be careful about taking too much. Ironically, one of the problems that it can cause is neuropathy.

Another good supplement to take for neuropathy is Alpha Lipoic Acid – that will help repair nerve damage. Research shows that a total of 600 mgs a day taken in split doses works best. ALA also works better when you have your blood sugar in good control.

Healing nerve damage is not an overnight process. The damage did not happen overnight and it will not reverse overnight. There are studies being done on nerve regeneration. People have had success getting their blood sugar in good control and using supplements like Benfotiamine and Alpha Lipoic Acid. Don’t ever give up hope or think that it is hopeless – I know I have hope for my future and believe that I will get my neuropathy turned around.
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2 thoughts on “Diabetic Neuropathy Webinar

  1. Kelly – Let me first say “congrats” for managing your own neruopathy so successfully. It does sound like you are recieving good advice/care and most importantly – you are a very involved and informed patient…which may be the key.

    However, I just attended the ADA confrence in San Diego last weekend and one thing you mentioned above has struck a nerve with me: please pardon the expression. Most diabetes patients do have at least some degree of neruopathy. The damage is simply a part of the progression and impact diabetes has within the body. I agree with your statement that Neruologists would be able to diagnose/treat/manage this issue. Unfortunately, most diabetes patients are not seeing any specialists for their feet or nerve assessment. Most diabetes patients are only discussing the condition with their primary care physician. As such, these discussions rarely encompass the feet. That’s a problem within our industry because these DPN-related issues often go undetected.

    I’m not certain what discussion you may have had with the pharma company; but it may be too easy to confuse a “sales” message with good insight (DPN is under reported). Thanks for the post. You are making a nice contribution by “writing more on the subject of diabetic neruopathy”. Thanks!

    • Thank you K.A. I agree with you that being involved and informed is the key – my hope is to get more people both informed and involved. I agree that most people are not seeing specialists – I actually only ever saw a neurologist once before filing for disability and he saw me for a different problem than the neuropathy. Neuropathy was never addressed at that visit. My statement was in relation to the comment made during the webinar and was not intended to mean that everyone with neuropathy gets to see a neurologist.

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