[TommyE]

This is my first post, I'm afraid, frustrated and feel alone. Here's my story, it's a little long. I've had a history of depression and anxiety and over the five previous years, I've been on a variety of antidepressants and Benzo's. I had a nervous breakdown in April 2011 and had Electro Convusive Shock Therapy (ECT), seven treatments. In May I was in the VA hospital, self admittted, for anxiety attacks for three days. My PDoc had taken me off Klonopin abruptly and I broke down again. I was put on Prozac and Zocor. I've been on Zocor for five years. During those three days I noticed my toes starting to burn, I thought I had picked up athelet's foot. On my way home, I picked up some Lamisil and treated it with no success. Once home I was having muscle twitches and severe body jerks when falling asleep for the next week, I told the VA PsychDoc on my followup and he switched me to Celexa and the body jerks subsided to a minumum over the next month. The burning, tingling pain spread from my toes symetrically to my feet, legs, hands and arms over the next month. I went to my PCP and he refered me to a Neurologist. Before my NDoc appointment in August, the burning had spread mildly to my back,cheeks and lips. Over the July 4th holiday, I passed out and fell after getting up from a chair and taking a few steps. I was taking to the hospital where I was examined by a neurologist and cardiologist over the next 5 days. The Neuro found i had no ankle reflexes, my foot pulses were weak and my feet were cold and slowly returned color when pressed. The cardiologist noted the foot pulses and had the nurses check my BP for orthostatic hyptension and refered me for a EchoCardio. I was put on neurontin 900mg per day which eased the pain.
I finally saw the Neurologist in August and he took me off the Celexa and Zocor as a trial, the only depression and anxiety I've had is over this neuropathy. He performed NCV/EMG and found a mild sensorymotor neuropathy in my legs. Over the next few months I had a number of blood tests which all came back normal, B12,B6, B1, VitE, ANCA, SED rate, ANA, Sjorgens, Lupus, Glucose, you name it, I've had it. MRI's are normal other then some cervical and lumbar disc issues. He refered me to the University of Florida Neurology and they repeated a number of blood tests, repeated MRI's and did a small fiber punch, all normal. They repeated the NCV/EMG and said it was normal, contradicting the other neurologist's test. The only thing they have found is my vitamin D level was low and put me on VitD 4000IU and Calcium 1200 per day. My pain has increased significantly and has spread to my back and butt, they increased my neurontin to 2400mg and put me on Percocet as needed. The UF neurologist is already starting the pscyhological talk because of my previous history, but my primary neurologist, the VA psychiatrist and my current pychiatrist, who I started seeing in December, all say it's not in my head because of the way it presented and progressed, just a coincidence, also no one seems to think the ECT cause this. I'm waiting on the results of Anti-Mag, Anti-Sulfatide, Igm,Iga blood work.
I have all the symptoms of Diabetic Neuropathy, painful burning feet, hands, body areas, sensitive to cold/heat, my mouth is bone dry, I don't sweat anymore, frequent urination, excessive thirst, dry skin, 30lb weight lose etc., but my fasting and GGT has been normal or slightly prediabetic, I've been tested several times. I noticed the burning would get worse if I ate any pasta, bread or potatoes, carb type foods, so I decided to get a glucose meter and check myself before and after meals for a week. I found my glucose levels were going high into the prediabetic range 140-199 on the 2 hour post-prandial check on a low carb diet. I got a referral to an Endo who looked at my normal lab tests and said I was fine, but when I showed him my glucose test meter results he put my on Actos for a month to help control the blood glucose spikes I am having after food and gave me a prescription for Mentax, but I haven't started it yet. I am over whelmed with all this and need some advice on what to do next, where to turn. After reading all the different posts here and other internet research on medicines, I'm afraid of every medicine I take, food I eat or things I drink. I don't drink alcohol or smoke. I don't have much family support, my wife really doesn't understand what I'm going through, just posting this has been a relief, thanks for any suggestion!
Current Meds:
Neurontin 2400MG
Actos 15mg
Vit D3 4000IU
Calcium 1200mg
ALA 300mg
Trazodone 50mg
Lexapro 10mg
Zocor 20mg (stopped again)
Percocet (Oxycodone 10/325) 1/2 to 1 @ night
Tylenol 250mg 3x per day

[Kitty]

Hi Tommy and welcome to NeuroTalk.

I'm sorry to hear about all your challenges. Here are a few links to forums here that you might find helpful:

Depression Forum: http://neurotalk.psychcentral.com/forum37.html

Anxiety Forum: http://neurotalk.psychcentral.com/forum50.html

Neuropathy Forum: http://neurotalk.psychcentral.com/forum20.html

I'm sure others will be along shortly to welcome you to the site. There are lots of friendly people here who can relate to what you're experiencing.

[aussiemom]

Unfortunatly, all meds have side effects. Some worse than others. I'd ask the endo for something else besides Actos. And if he says you are "prediabetic" again run. You are no longer in the pre range. Were you at Shands?

Mrs D should be along, she is a wizzard with supplements.

[NeuroLogic]

Originally Posted by TommyE

Current Meds:
Neurontin 2400MG
Actos 15mg
Vit D3 4000IU
Calcium 1200mg
ALA 300mg
Trazodone 50mg
Lexapro 10mg
Zocor 20mg (stopped again)
Percocet (Oxycodone 10/325) 1/2 to 1 @ night
Tylenol 250mg 3x per day

Hi Tommy,

A lot of drugs deplete magnesium, and magnesium deficiency can cause muscle twitches, spasms, as well as anxiety and depression. Furthermore, taking Ca supplements but no Mg, too, can also deplete Mg. I'd be very surprised if your Mg isn't low.

Carolyn Dean has a great book on Mg which I am still rereading.

[mrsD]

Welcome to NeuroTalk:

Looking at your posting history, I see some initial things, that I hope you can clarify.

1) You say B12 was "normal"...? But we really need the numbers because doctors will call low levels "normal" when they are not.

2) Zocor? Well, statins are known causes of neuropathy and I'd discuss this with the doctor, and consider going off this drug. It can take years to recover, if one does recover, from statin damage. Zocor is a lipophilic statin, meaning it crosses into the brain, and damages there too. Statins prevent remyelination of axons in nerve cells. Statins vary in lipophilic traits and Zocor
is the most potent of these.

http://neurotalk.psychcentral.com/thread83872.html
It was once thought that because statins supposedly reduced "inflammation" they would help MS patients. This study, resulted when the opposite findings resulted.

3) Actos is not a good choice for anyone today. It is linked to bladder cancer. Metformin is the best, if you can tolerate it.

4) Alpha lipoic acid, at your dose is not enough. If you use the newer improved R-lipoic stablized form, you can get much better results at 100mg a day. Not all R-lipoic is stabilized so check the label before buying. Many of us use Doctor's Best brand, which is available online from iherb.com, Amazon, and Swanson's at big discounts. Lipoic acid should be taken on an empty stomach.

5) you need to keep a record of A1C values, in addition to glucometer testing. A1C is more predictive of blood sugar problems.

6) if you start Metanx make sure you take it on an empty stomach. The B12 in it needs this factor, for absorption.

Peripheral Neuropathy once it starts, is a long term process difficult to interrupt. So be patient, and continue with your reduced carb
diet. Impaired glucose tolerance is a slow process and by the time it is discovered, damage is already happening.

To help with healing I'd suggest you take fish oil or krill oil daily.
3 fish oils, or 1 or 2 Krill, to help with repair of the nerves.
Magnesium is also important because it is a cofactor in lipid metabolism. Do not choose magnesium oxide...it is not absorbed.
Here is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

The R-lipoic acid may help with your glucose handling, so continue to test to see if your blood sugar goes down some. Eating smaller meals, also helps with those after meal spikes. (postprandial spikes).

[TommyE]

I am going to Shands Jacksonville Neuro. I've read about all the Actos warnings and am going to ask for something else. Thank you for responding, it's nice to have someone to talk about this with.

[TommyE]

Originally Posted by NeuroLogic

Hi Tommy,

A lot of drugs deplete magnesium, and magnesium deficiency can cause muscle twitches, spasms, as well as anxiety and depression. Furthermore, taking Ca supplements but no Mg, too, can also deplete Mg. I'd be very surprised if your Mg isn't low.

Carolyn Dean has a great book on Mg which I am still rereading.

Thanks for the info. I'll defintely look into a Magnesium supplement. Do you have any suggestions on the type and amount to take?

[mrsD]

Tommy, I put up my information thread link in my post, to our magnesium information.

Basically start at 1/2 the RDA and use a chelated form and avoid Oxide. Everyone decides for themselves how to use it,
because everyone is different. Some people find it more laxative than others.
http://neurotalk.psychcentral.com/thread1138.html

You can choose to eat more magnesium containing foods, instead and those are listed on that link as well.

[TommyE]

Originally Posted by mrsD

Welcome to NeuroTalk:

Looking at your posting history, I see some initial things, that I hope you can clarify.

1) You say B12 was "normal"...? But we really need the numbers because doctors will call low levels "normal" when they are not.

2) Zocor? Well, statins are known causes of neuropathy and I'd discuss this with the doctor, and consider going off this drug. It can take years to recover, if one does recover, from statin damage. Zocor is a lipophilic statin, meaning it crosses into the brain, and damages there too. Statins prevent remyelination of axons in nerve cells. Statins vary in lipophilic traits and Zocor
is the most potent of these.

It was once thought that because statins supposedly reduced "inflammation" they would help MS patients. This study, resulted when the opposite findings resulted.

3) Actos is not a good choice for anyone today. It is linked to bladder cancer. Metformin is the best, if you can tolerate it.

4) Alpha lipoic acid, at your dose is not enough. If you use the newer improved R-lipoic stablized form, you can get much better results at 100mg a day. Not all R-lipoic is stabilized so check the label before buying. Many of us use Doctor's Best brand, which is available online from iherb.com, Amazon, and Swanson's at big discounts. Lipoic acid should be taken on an empty stomach.

5) you need to keep a record of A1C values, in addition to glucometer testing. A1C is more predictive of blood sugar problems.

6) if you start Metanx make sure you take it on an empty stomach. The B12 in it needs this factor, for absorption.

Peripheral Neuropathy once it starts, is a long term process difficult to interrupt. So be patient, and continue with your reduced carb
diet. Impaired glucose tolerance is a slow process and by the time it is discovered, damage is already happening.

To help with healing I'd suggest you take fish oil or krill oil daily.
3 fish oils, or 1 or 2 Krill, to help with repair of the nerves.
Magnesium is also important because it is a cofactor in lipid metabolism. Do not choose magnesium oxide...it is not absorbed.
Here is my magnesium thread:

The R-lipoic acid may help with your glucose handling, so continue to test to see if your blood sugar goes down some. Eating smaller meals, also helps with those after meal spikes. (postprandial spikes).

Hi Mrs D,

I've enjoyed reading your posts to others and really am thankful for this forum to share my issues with.

I've been tested for B-12 twice over the last 5 months, both tests were within 5 points of each other. Here's some of my test numbers.

B12 - 465
Folic Acid - 11.1
B1 - 167
B-6 - 26.6

My A1C went from 5.8 to 5.4 after I went low carb. My fasting blood sugar went from 119 to 100. My low carb diet was limited to lean meats, mostly chicken breast, vegetables and low glycemic fruit. No breads, pasta, rice or any type of grain products. Since my last test and my doctor insisting everything was ok, I reintroduced some high carb foods, rice, potatoes, pasta, oatmeal etc, really small portions on a limited basis, just a single serving tablespoon or two. That's when I noticed the burning increased after I ate. My blood sugar is all over the place, right now, sometimes it's lower then 140 2-hour post prandial, sometimes it's over 180 depending what I eat. I'm afraid to really eat a significant amount of carbs, much less have any sugar like cookies, chocolate or ice cream, I don't want to see what my blood sugar would spike to then.

Yes the Actos really worries me, but I don't know if my Endo will put me on Metformin, my next appt is in Jan.

I took the metanx on an empty stomach as suggested, thanks.

Any suggestions on how to control my cholestrol without the Zocor, my LDL is 176, HDL 62, Triglycerides 71.

Any brand/type suggestions on the Fish Oil and Magnesium? I'll check out iherb.

Thanks for the help Mrs D!

[mrsD]

Well, Tommy, your B12 is marginal. So the Metanx should help that.

Blood sugar can also be affected by stress and elevated cortisol levels. Your new readings seem much better, and your A1C is pretty good too. Being ill or doing heavy physical work/exercise can briefly raise levels glucose too. You might ask for a fasting
INSULIN level next time you have tests. If this is elevated it suggests insulin resistance.

Potatoes (and other nightshade veggies) are problematic for me too. Potatoes have an alkaloid in them called solanine, and this is suspected to be problematic for some people.

Some vegetables are slowcarb and useful. Beans, legumes like peas and lentils, and Edamame beans can satisfy hunger for a long time, esp overnight. They help stabilize blood sugars for some people. Beans, Edamame beans are also good sources of dietary potassium and magnesium.

Use nuts as a snack (in moderation) and that helps keep levels going well.

I use 1/2 a Zone bar for night time snacks. If you wake up at 1 or 2am hungry, you might be quite low. Not eating then, forces the liver into gluconeogenesis and then the morning fasting levels are higher than if you ate a little something at 2am. 1/2 of a Zone Perfect Nutritional bar helps me alot with morning levels. Elevated fasting effects like this has a name= dawn phenomenon.