Navy veteran undiagnosed and in pain
 

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

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.

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.

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.

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).

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.

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

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.

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!

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.

This is a handy chart to show where A1C levels refer to ave. glucose readings, during the day.

http://www.diabeteschart.org/bloodsugarchart.html

We use Costco brand concentrated fish oil for hubby,
and I use Krill oil.

Your triglycerides are good (they are a marker for heart attacks) and you HDLs are good. At that point I'd ignore the LDL.
Once the patents for Lipitor and Crestor expire we will hear much less about "cholesterol".

Read this post and read the links on it, to see why:
http://neurotalk.psychcentral.com/post665830-5.html

You can request a lipo-a test... which genetically will tend to be high and reflect high risk. Normal on this test lowers your risk substantially. It is inherited.
http://www.mayoclinic.com/health/heart-disease/HB00016

Your cholesterol numbers sound great to me, I can't imagine that a doctor has you on Zocor with numbers like that. My triglycerides were over 500 and I was put on Tricor,which caused my balance to deteriorate to the point where I could barely walk, and pain levels to escalate. My neurologist suggested in a very low key way that I might want to discontinue that drug. Since then my triglycerides have stabilized in the 300's, still very high, but the drug had little positive effect, and a huge negative effect. These drugs are really dangerous for people with PN.

Suzanne.... I had triglycerides over 385 at one time a decade ago. I lowered them to the 180's with fish oil. They have stayed low now since then! Have you tried fish oil at all?

Yes, the fish oils worked as well as the Tricor, lowered them about 200 points. I don't have any other heart disease markers, so this may be some kind of hereditary issue as well, I did read in a British medical journal that high triglycerides can go along with some types of hereditary neuropathies. I have lost about about 35 pounds recently and am due for a lipids panel so they may be better this time around.
Thank you! The fish oils definitely helped, but the pcp still looks askance at the numbers.

@Tommy:

I just realized, you are a Navy Veteran? People in the armed forces are sometimes exposed to toxins. What did you do?
Some bases are so toxic they have been abandoned!
http://www.dailyfinance.com/2010/09/...-toxic-legacy/

Have you been screened for arsenic and other heavy metals?

Mrs D, I was in the Navy for 25 years. I worked on aircraft and was exposed to various chemicals in hydrocarbon products, fuels, oils, solvents, paints etc. I was tested for lead, mercury and something else and was ok.

Niacin. My wife was prescribed a statin drug with much higher numbers than yours. I did some digging, and found that while many websites acknowledge niacin "may help statins", they don't want it known that, for many people, cholesterol & triglycerides can be controlled with niacin alone - there is still too much money to be made off of statins.

Our doctor prescribed Niaspan - a prescription form of controlled-release niacin. That's another bogus moneymaker. The exact same thing can be gotten OTC for less than 1/10th the cost of Niaspan.

The OTC niacin lowered her numbers just as effectively as the statin. Our doctor was amazed and delighted. We don't hold him to blame in any way; he didn't know, as most doctors probably don't - they go by their sources which are heavily influenced by Pharma.

Doc

Hello,
I took Zocor over 7 years ago and that is when my feet and legs started acting up. Thank goodness for a powerchair as I no longer have use of my legs. In fact the pain has dropped a good bit since the lower body is practically dead. I only take 5mg methadone in the am and 10mg amitripline at night for sleeping and a baby asprin. Is anyone on this forum become wheelchair bound and what is your age. I don't take the supplements (over 3 yrs use) like I use too.

Hi Tommy
 

I am glad you found Neuro Talk. Hopefully there will be alot of posts to help you sort out what is happing to you. I do have a concern, when you do not get the support you need at home, for you to endure these things and go forward toward a solution. We all need those buddies around to help us cope. I hope that Neruo Talk can help you by providing friendship and compassion. Suffering is no fun, especially if you are alone in your suffering. Please come back here any time to post, vent, talk and relay to us what you are experiencing. PM me any time you want to. I would always be around to talk to you.
You have such a wide range of different symptoms, and your medications are not really doing the trick. Who was the last physician you saw, and your last diaganos or comments your doctor made to you? I really wish you had a definative diaganosis to go with. I also hope there are others on our site, who have much more experience with these kinds of symptoms to help you with. Have you done some research on the internet? Do you have copies of all your medical records up to date? Please do keep posting. There are alot of very intelligent and knowledgeable people on Neuro Talk to help you decipher some of your situation. I will be thinking of you, and keeping you in my prayers. I hope I can be of support to you. ginnie

Doc, I have read about Niacin helping cholestrol, but there was some issue about a flushing effect? I go through several episodes every day where my hands and feet go from my skin being cold and shriveled to a slight swollen red flush episode. I really don't want to take the Zocor again, because i don't know what caused this Neuropathy in the first place. I'm trying to exercise more but it's not well tolerated in my feet. Thanks for sharing.
Tommy

Everyone, had a followup Neuro appt yesterday at Shands Jax. They were not able to find anything except low Vitamin D levels. All tests came back normal. The doctor told me that me the pain was a "nuasance" and all they could do is treat the symptoms. She had no answers as to why the neuropathic pain started and continues to progress. Her position was that there was nothing wrong with my SF or LF nerves, so there was nothing to be done. She avoided my questions and her total lack of concern was unbelieveable. She didn't seem to understand the level of discomfort and pain I am in. I have had every test there is. I just don't know where to go from here.

Well, based on that Zocor history, I'd focus on that for now.

Switch to R-lipoic acid...starting at 100mg a day. Also I'd do
CoQ-10 (to replace that which the Zocor lost for you)... 200-300mg a day, and acetyl Carnitine 200mg a day. Benfotiamine is also useful in diabetics, and would also be a good choice to add. 150mg-300mg/day.
for 3 months. R-lipoic besides helping the mitochondria if they are damaged, also lowers blood sugars some. Test while you take it and see if you no longer need the Actos. Do you know what your A1C is before the Actos and after? I think you need to be testing at least 4 times a day to see how your blood sugar is doing.

If you have mito damage from toxins or a glucose swinging low to high to low again, you can be have PN from that. Find your daily lows and highs, and try to moderate them into a more level number.

Alpha lipoic 300mg is not very much. To get results from alpha, you need 600mg a day or more (mostly more).
R-lipoic stabilized is far more absorbed and efficient. Take on an empty stomach for best results. Doctor's Best form is affordable and available on Amazon.com, and iherb.com

It is all now in your lap... since your doctor is not going further with you.

Hi Tommy
 

I want to welcome you to Neuro talk, even if I am a bit late in doing so. I have such respect for your service to our country. My one son ships out in June ( an adoption of the heart} my other son served in the first Gulf war, and was the rescue ship for the achellie laurow (sp) incident.
I want you to know my son got sick too. He fell off the ship into very very toxic water while painting the ship when he first joined up. I believe what has happened to him since was due to toxic posiening. He got thyroid cancer, and has not been well since.
I really hope the VA. will get to the bottom of your trouble. You deserve the very best of care and compassion. I don't know if his medical troubles were do to the number of injections he received, or due to the toxic dunk in the ocean. I only know my son is sick, and has been with a number of serious health problems. The VA took way to long to diaganosis his cancer.
I am just a mom, who feels for you, and my own son when I hear there is medical problems. I so hope that you get a good resolution, and that you can have a good quality of life. You will be in my prayers Tommy. There are alot of others on NT who will respond to you too. All my best, and my gratitude for service to this country. ginnie

Tommy read my post
 

Go to the stickies at top of page. Click on Neuropathy does improve.

click on my name George 75. It will take you to my information profile.

Click on my 57 post. i HOPE IT MAY HELP YOU IN SOME WAY.

George

Hi Tommy,

Niacin flush usually occurs with doses over 50 mg. Taking a controlled release version can reduce/eliminate this effect. Taking 1 aspirin or 1 vitamin C one half hour before taking the niacin also blocks/reduces the flushing effect. Alcohol can make the flushing worse. The flushing usually disappears as the body gets used to the niacin.

Taking 500 mg of niacin per day long term (including the controlled/release types) can cause liver damage, so patients using that much for cholesterol control should have their livers screened before taking it and periodically (annually) afterward.

I would suggest trying a lower dose, and through retesting, find the lowest dose necessary to get the desired effect.

There is a no-flush type of niacin called inositol hexanicotinate that is not as hard on the liver, however there is no evidence that this form has any benefit on total cholesterol, LDL-C, HDL-C or triglycerides.

Doc

Some people are more sensitive to the Niacin flush than others.

ME, for example.

Niacin is also not a good idea for some diabetics, as it can raise blood sugar.
http://www.umm.edu/altmed/articles/v...-b3-000335.htm

Also notice that niacin increases histamine. Histamine can cause PN like symptoms in some people.

I have started a histamine thread here, because some people with certain food intolerances fit that category. Sudden histamine in the skin, leads to flushing, burning and tingling.
http://neurotalk.psychcentral.com/sh...471#post840471

More good reasons for finding/using the lowest effective dose. :)

Doc

Hi Ginnie
 

Thanks for the prayers and appreciation for my service. I'm sorry to hear about your son's cancer and health, I hope he is getting better? Is your other son already in the service or is he just going in? My two boys are in the Air Force, I told them to go AF instead of Navy.
I haven't seen the VA about the Neuropathy yet, i have been going out in town to the University of Florida Shands Jacksonville Neurology and to a primary Neurologist out in town. You may have read my other post about my last visit to the neurologist this week, no joy. The VA will be my next stop i think. Thank you again for your concern about my health, it's nice to know there are people who appreciates what I am going through and cares enough to read and respond. The responses from the posters on this board has been a blessing to me.
Tommy

Dr Smith / Mrs D
 

Thanks for the Niacin info, i'll do some research and see if it works for me.

Tommy

Hi George
 

Tried to find the "57 post" you were directing me to, couldn't find it? Can you help further?

Tommy

Hi Tommy
 

You bet I appreciate your service to our country. Ask any mother of a service member and you will find that same love. Sean who served in the first gulf war, is now an occupational physical therapist. He was stationed out of Jacksonville. He has had no cancer since the thyroid surgery, but he gets checked out often for his levels. He has a good job, but demanding with older patients needing alot of care. Joe, my adoption of the heart, is stationed in Ga. He Just got back from afganastan. He had to leave his wife and one year old, and that 9 months was a hard nine months. He is home now until June and ships out again. I don't know yet where to. He and his wife are now expecting their second child. He is in the Navy for life, unless the Navy decides differently.
Wish you didn't have the NP. I hope that there can be some relief for you. The VA was good to Sean, so I hope this next visit to the VA hospital has some help for you. After all you did for this country I want this country to take good care of you. We have an all volunteer service, and we are like no other country in the world. I pray right now, that the situation with Iran does not escalade, and cost us time and lives in another situation. I pray that the world will come to know peace. Please be good to yourself. I sincerely pray you get help and that your pain goes down. Let me know how you do, and if you are still active. Just another Navy Mom, ginnie