Newly diagnosed with Diabetic Neuropathy
 

Hi guys. I was told to find a neuropathy forum from a friend*** where I hang out a lot since I have diabetes. I was recently diagnosed with diabetic neuropathy in my legs. I don't know about my arms since we were testing my lower back and legs due to my bad curvature in my lumbar spine. My spine is fine, the MRI confirms it. Well - fine as in not damaged due to the severe curve.

I have burning in my thighs and knees but seem to have full feeling in my extremeties. No numbness yet. The doctor who did my EMG told me I have slow nerves in my legs. That's all I know and when I googled slow nerves the only thing that popped up was about neuropathy. So here I am.

I hope to get to know all of you soon. I've been reading through some threads here and know I am in the right place. My blood sugar is generally good between about 85 and 160 though usually 140 or lower. I've only had pre-diabetes since about september 2010. Though since I"m on Victoza now my blood sugar is usually 95 in teh morning versus 110 or higher. I'm pleased with that.

I am severely obese, 373 pounds on a 5'2" frame (female). I thought the victoza was supposed to help me lose weight. Well - it didn't. But at least my blood sugar is much better! That was the main reason for going on it.

I take many pills. I'm on neurontin (gabapentin) for anxiety (off-label use prescribed by my psychiatrist) but now that my GP raised the dose of it for my leg pain I'm doing much better. I take 1 in the morning and 2 in the evening. My pain usually hits me in the evenings and nighttime so it works out better that way. I did have to take another one this morning since I developed the leg pain since I hadn't been to sleep yet. I tend to have more pain when I'm awake longer than usual. Not sure why.

I'm thinking of starting on ALA but will ask my doctor first since it can interfere with thyroid medication (which I'm on for a slow thyroid).

Anyway, I was just introducing myself. :)

Brittany

Welcome to NeuroTalk:

ALA has only one study done on rodents that suggests it affects
conversion in tissues of T4 to T3. No human studies. Not all rodent
studies are applicable to humans. And the one study has not been
replicated.
This is the article those suggestions are based on 1991:
http://www.ncbi.nlm.nih.gov/pubmed/1815532
There are no other papers on this topic at PubMed more recently, and since ALA has been used for decades in Europe commonly, one would think something would have been published about it by now for humans.

It has been suggested that the mixed racemic R and S version which are not natural to the human body may be one reason.
When ALA is commercially manufactured, the S version appears and at first was not removed.

Today there are R only versions, and a new R that is water soluble and better absorbed... NaRALA.

Lipoic acid can however change your blood sugar, so people on medication may see a lowering effect and need medication adjustments.

I do not think the new R-lipoic stablized is going to do much at 100mg a day to the thyroid...and that is all you need because absorption is so much better. Many of us here use Doctor's Best brand.

Welcome Britany. I find that, also, if I don't get enough rest my pain is worse.

Hi!

I am curious, if you were only prediabetic, why did they put you on medication? Or did it turn into full diabetes? Would you mind me asking what your blood sugar numbers were for the dr to decide to use medication? I ask because I am prediabetic and always watching numbers, however every doctor seems to have a different opinion on what numbers constitute diabetes.

I believe my neuropathhy is from spiking numbers, however my dr believes it is from my hypothyroid.

You will find lots of great advice here. :)

Thanks for the info! I bookmarked that specific ALA amazon page for when I go to buy it.

My doctor is proactive with diabetes. pre-diabetes IS diabetes. It's just the early stages of diabetes. It's like you can't be a little bit pregnant. You are or you aren't. My doctor put me on metformin initially which is the first line treatment for type 2 diabetes generally. It didn't do anything for me which is weird. My blood sugar stayed the same and my spikes were the same. Plus I gained 40 pounds on it which is apparently unheard of. So I went off of that about a year and a half after I was put on it. I went through a period of about 6 months that I tried diet after diet to reduce my blood sugar. I did great (blood sugar-wise) on atkins but couldn't stick to the severe restriction in types of food i could eat.

My blood sugar is now sort of controlled on Victoza. I still have high spikes if I'm not careful about eating carbs or the amount of carbs but that's a choice I have to start making to lower my blood sugar. I've had a handful of readings that (for fasting morning readings) have been above 125 and I've had a handful of readings above 200 (when NOT on steroids) so I am fully diabetic now. So we assume my neuropathy is caused by my diabetes. It's not unheard of for diabetes of only 2 years to cause neuropathy. I've had this pain for at least a year though. So I guess my nerves are extra sensitive to above normal blood sugar.

I suggest you visit *edit*and learn more about diabetes, It has really helped me to find my way. The people there are great! Their mantra is "eat to your meter" meaning if you test 2 hours after a meal and your blood sugar was above 140 do not eat that meal again or reduce the amount of carbs you eat in that meal. Another good site is *edit*. It's ahuge in depth diabetes site that is full of no nonsense clinical trial information about diabetes. I'd definitely check it out.

Part of my problem is 'compressed nerves' due to my overhanging belly which causes severe leg pain when sitting up for more than about an hour. But that isn't diabetes related. I do have slow nerves in my legs though (and perhaps feet?) but I'll talk to my doctor more about it when I see him on the 3rd. I want him to explain to me exactly what the specialist found who did my EMG. She skirted the subject on what exactly I have but seemed to be very bold in writing it down for my GP to read... So perhaps she didn't want to scare me with the N word. I take gabapentin twice per day now. It helps the compressed nerve pain due to my belly.

I asked her if my obesity would cause slow nerves and she said no not at all. So the only other thing that could cause it that we know of is the diabetes.

First, you need to find some way to bring your glucose down!! I think the poster who got edited was referring to the American Diabetes Assn. site. We do encourage eating to your meter there.

There are other types of diabetes, besides 1 & 2. Have you had any tests to rule out the other types? I'd check into that, an endo can help there.

No I've not been tested for any other types of diabetes. I'm severely obese and with a family history of type 2 my doctor didn't seem interested in checking. I see my GP for my diabetes. I thought about getting an endo but since the Victoza is working well for me I decided against it. If my sugar does get worse I will have my doctor raise my dose of Victoza to the 1.8mg dose and see how that goes. Then if it gets even worse I will see an endo.

The only thing I can do to reduce my blood sugar is to eat less carbs. My family doesn't cook very often so we often eat out or have food delivered. So generally we eat a high carb diet here. I try to snack on low carb foods when I get hungry, I eat string cheese, peanuts, lunch meat, tuna in mayonnaise, etc.

My blood sugar is mostly acceptable except when it hits above 140 which I know is the cut off for when bg's are safe and not damaging your body. Anything higher for an extended time is doing damage. I know that. So I try to keep my bg's lower than 140 most of the time. THough it doesn't always happen since we eat out so much.

Welcome. I do not have diabetes, but for the healing of my nerves I do watch the blood sugar and test one hour after eating. That way, you can see the spike. I rarely do it now since I know what can get them higher.

The number is always good even then and goes further down two hours later back to 80 or 85. I think testing earlier to see the spike is good to do even for me with good numbers. Taught me the foods to stay away from.

I try to keep my numbers low, so no spiking. It has been very good to do. I rarely get over 100. Very important to stay level.

Thankfully I have normal glucose so that is easy just staying away from simple carbs.

Losing weight would be number one for you. Without the simple carbs weight comes off pretty nicely. Extra weight is serious for many reasons. The supplements are great but a normal weight is so important.

Yes I know I have to get the weight off but so far the only diet that has worked is Atkins and I have a huge problem trying to stay on atkins since it is so restricting. I just can't handle it.

Thanks!

I have researched diabetes, probably too much, because I find doctors to be lacking more than myself, haha! I use my meter at the 1 hour mark like Sally, because at 1 hour that tells me the spike number. Dr's are hung up on the 2 hour mark which is stupid in my opinion. If I went by 2 hour readings I would never know that I am spiking so high at 1 hour. At 2 hours bg is coming back down...or should be, and mine does. I care more about the spiking number as that is what harms nerves.

I agree, I keep my bg numbers below 140.

I am shocked that my mothers dr told her it was ok to eat fruit and many other high carb foods. She spikes to 300 if she eats that stuff but can control it if she does not eat it. I think doctors ideas on what to eat are antiquated. All the wanna do is prescribe meds.

Sally is right, I have lost 40 pds simply by getting rid of simple carbs, white flour, pasta and all sugar. I understand what you mean when you say it is hard, and I could NEVER stay on atkins when I wanted to lose weight, however it is about my health now and that seems to be all the motivation i need to skip the carbs. I don't wanna lose my feet. Fear keeps me motivated.

good luck

I think getting your B12 and Vit D tested is your next step.

Metformin can result in lower B12 levels in many people.

Get the numerical results, and don't accept "normal" from
the doctor. B12 lab ranges are reported in an outdated format in many places, and very low numbers are given "normal" status.
The new therapeutic guidelines for it is a minimum of 400 pg/ml in the US. Low B12 will damage nerves over time.

Also there are reports that fixing low Vit D in diabetics improves PN. So you need to have those two tests run.

Type 2 diabetics may burn out the pancreas over time, and therefore need injected insulin. The fact that you did not respond to metformin is not normal. It is a possible flag that you are really type I. Type I can occur in adulthood, and I've met 2 people who were misdiagnosed in their 40's and 50's.
Do you know your A1C number? This can be a better indicator of type I or II for some patients.

Nerve damage can also come from drugs. Statins for cholesterol and certain antibiotics can do this. Here is an informational thread on the topic.
http://neurotalk.psychcentral.com/thread122889.html

So right there are two other reasons for PN besides diabetes.
Cipro, Levaquin and Avelox are given too freely by doctors, and some people develop nerve damage from them. Statins are common too, and can be very damaging. Often these triggers are ignored by doctors.

Wow I had no idea. I haven't ever taken cipro though I am on crestor for my cholesterol. I was on zocor prior to crestor. I'm also on tricor for my triglycerides.

How can I bring up this information to my doctor? He already thinks I'm nuts for researching everything. I'm a researcher when it comes to health problems. He gets annoyed when I say "Well I researched.. and think that maybe.." or "I looked it up and I found out.."

I know I probably am vitamin D deficient since I rarely get outside in the sun and live in Ohio where the sun rarely shines here since it's always overcast. Plus I"m allergic to the sun, I get sun poisoning on my arms so I have always avoided the sun since it causes painful itchy hives all over. Should I start taking a vit D supplement? which one is best? What dosage?

You should get tested first, to see where you are.

Most doctors will test for Vit D. But they will offer the inferior treatment for it as D2 on RX. Once you have a test number, you
can use OTC D3 yourself to figure a daily dosage safely.

The average is 1000IU D3 for every 10 points you need to raise.
People who are overweight may need more, but this is the basic
dose calculator. Use it and get retested in about 6mons to see where you are.

http://www.ncbi.nlm.nih.gov/pubmed/22050401

http://www.lef.org/newsletter/2008/0...neuropathy.htm

Best lesson I ever learned was that the doctor works for me.

The first time I ever had a doctor "dismis" me I felt rejected and humiliated. He literally had his nurse call me and suggest I find a doctor more suited to my "self diagnosis needs". I was naieve then. I was humiliated and thought what had I done? All because I was questioning a new blood pressure drug he prescribed and had researched it and did not want to take it.

Today? I fire any dr that has a "god complex" and is too intimidated by an informed patient that asks questions and makes informed decisions for myself regarding treatment plans and medication.

My thyroid dr refused to prescribe me natural desicated thyroid medication. So I fired her. I researched local doctors and found one that does prescribe it. Best decision I ever did. Knowledge is power.

If your doctor is upset when you question him, it may be time to find a new doctor. Become empowered. You care about you more than any doctor. There ARE doctors out there who will work with patients like me. You have to find them.

For me, that involved much prayer and patience.

If you want to improve, IMHO, loosing weight and exercise are the two things that will make the biggest difference. It is not easy, but until you do it chances are you will not see major improvements.

Fortunately I have found a doctor that takes the natural approach to healing and health. His approach is that most chronic conditions can be improved through lifestyle changes. Fortunately for me it works.

Diabetes, excess weight, PN all run in my family. I have PN, but have been able to keep it under control with exercise and eating healthy foods. I am not on any medications and do not have diabetes.

Eating out is a big problem. You will need to learn to eat more meals at home. Eliminate many packaged foods, simple carbs, sugars etc.. Eat more vegetables and whole fruits. My doctor states that the only fluids I should drink are water and some teas. Lost a lot of weight when I gave up juices and sodas ;)

I know you probably know all of this, and yes it is not easy, but it works :)

Wishing you the best.

I have one thing to add to cody's nice post.

It IS difficult to do...we all know that. But if you start in a way that is less challenging and move forward slowly you can do it.

One thing you can try.... reduce your portions by 10% to start.
It is a small change, and will not create huge hunger issues.

Get rid of sugar and white carbs...limit them slowly. And you will lose your taste for them eventually. Say a pasta once a week or less, easy on portion size. Substitute yams/sweet potatoes for white potatoes for example. Some foods have long staying power in the body and don't spike blood sugars. Lentils, peas, beans (I prefer black beans) can be very filling and slow to metabolize, and reduce hunger.
Some carry outs are pretty good... I like Baja Fresh. They tend to reduce fat, and calories in several of their menu selections and still taste really good.

If you add in salmon or other fatty fish, or take fish oil supplements you can reduce triglycerides without that TriCor.

By the end of 3 months or less you can be eating a new way, and on the road to positive changes.

Thank you all for your input. I'll ask my doctor for a vit D test. I started to take krill oil to help with my lipids but for some reason I quit taking it, not sure why, I think I just started to forget to take it. I'll have to find the bottle and start taking it again. The reason I chose krill oil (Mega Red) is because the gel caps are so small compared to huge fish oil gel caps. I hate taking lots of huge pills.

I don't often eat potatoes or other white foods like pasta. I only eat pasta maybe once a month if that.

Eating large amounts of protein is not very protective in
diabetes. Excess protein is converted to glucose by the liver.
It is best to be moderate with some complex carbs, with good
lean protein and veggies.

I found a nice vegetable rotini at WalMart... 8 gr of protein
per serving too. That is the type I use now. In Moderation.
I was using Barilla Plus, but the Ronzoni tastes so much better. ;)

http://pasta-products-ronzonigardend...7130000063ZX39

I don't think I eat large amounts of protein. That's cool that you found the Ronzoni, I haven't heard of it. But then again I don't often eat pasta. If I do eat pasta it's spaghetti.

I LOVE THE RONZONI!! And if I take my flaxseed before I eat it, my bg does not rise at all! The ronzoni I use is the smart taste with fiber.

Finding a great doctor is important. Integrative/holistic doctors are scientists, they LOVE learning and researching. Most reg. doctors do NOT do this.

My integrative doctors tell me we are partners in my healing. They want me to learn and share anything I can find and they will tell me if it might work.

The mindset of holistic doctors is very different. They are not robots. They do not just write prescriptions. That is used only if there is no choice. Prevention and actual healing is what they help with.

That is how I learned so much about diet and of course, supplements. I thought I ate healthfully, but I now do much better. I also do a ton of research and reading. I lost weight on the food I eat and it is delicious. Hubby is an amazing cook. We love to eat out at great places also, but our choices are good.

My favorite restaurant has a wonderful grilled salmon with grilled scallops on top over a bed of cooked spinach with a wonderful leek sauce. I love another dish at a great place too. Miso salmon soup with mushrooms, grilled calamari salad with avacado and a great dressing. I had grilled fish tacos and a shrimp cocktail for lunch out with hubby today. I leave the corn tortillas, don't eat that part, but if I wanted to, I could eat a little of that.

It all pays off. It is fun to learn how to eat nutritious food, low carb, no junk. The sugar I eat is coconut palm sugar or honey, small amounts. No fake sugars. Almond flour, no white stuff. There are so many wonderful products.

I have to use regular doctors since I have insurance. My insurance (as far as I know) does not recognize holistic doctors and therefor I have to use more 'traditional' avenues for treatment. I don't have money to go out and pay several hundred dollars on an appointment and treatment. Perhaps when I get SSDI (ha like that'll happen, I've been fighting with the government for 7 years to get approved) I can afford alternative medicine.

Insurance should pay. Just depends on what you have I guess. They are all MD's.

i use a DO instead of an MD and insurance accepts DO. Plus there are regular MD's that are open to working with patients and alternative options, you just have to do your research and find them.

I'll have to do some research. How would I go about doing that? Do I call their office and ask the receptionist if their doctor(s) are able to do alternative medicine?

When insurance issues arise it is usually the DOCTOR who does not accept the insurance. Insurances often reduce payment amounts for doctors...and so then some doctors are declining to participate and are only accepting cash now. I see some posts on our boards occasionally from posters who see specialists.

Insurances DO have the last say about a treatment and its coverage. Example, Anodyne for PN used to be covered with no problem, and now is being denied. Many insurances balk at IVIG for some indications too.

Well when I was looking for a doctor who prescribes natural desicated thyroid hormones I started with google. I got a list of doctors and started calling and asking.

Then I read online at a site that the best way to find info is from your local pharmacy. Google is so amazing, how did we ever live without internet? So I went to walgreens as asked the pharmicist, do you carry NatureThroid perscription? He said yes. I said, can you tell me which local doctor here prescribes it? And he gave me the doctors name and even told me where he was located.

Local pharmacists are amazing. They no ALL about the local doctors.

Dr. Weil has a school for MD's to learn more so they can help with many other therapies and deal with the whole person.
http://integrativemedicine.arizona.edu/


Another place to find integrative MD's. Just look on the list.
http://www.anh-usa.org/

I am sure there are other lists also.