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Old 07-17-2009, 07:27 AM   #1
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Seeking opinion regarding cause of peripheral neuropathy

Last October, I began having neurological problems seemingly "out of the blue". My symptoms began with paresthesia in my right pinky and ring fingers on the finger on my left hand three days later. The sensations were intermittent and not severe at the time. A week after my initial symptoms I began experiencing sharp pains in my forearms (much like cramping) and shooting pains that ascended my right arm into the shoulder. Also, I was experience severe fatigue. At that point, I went to my GP and was referred to a neurologist. I was able to get into the neurologist three weeks after my symptoms began. At the time of the first visit, I also was having intermittent paresthesia in my legs and feet below the knees. In the next week, I had MRIs (with contrast) of my head and neck, EMG, and a full blood work-up including tests for Lyme Disease, HIV, Lupus, etc...which were all negative except the EMG confirmed both sensory and motor neuropathy in all four limbs and MRIs showed chronic sinusitis. Blood tests showed that the only slightly elevated values were blood glucose levels (102 mg/dL) and HbA1C (6.1) followed by arsenic at 56 ug/L. This was followed up with a 3 hr glucose test which was normal.

I was diagnosed with prediabetic neuropathy (which I don't believe my symptoms are consistent with) with a recommendation to control by blood sugar and exercise more (I has already running 4-5x a week before this all began). Also, I began taking multivitamins and flaxseed oil. I'm 30 years old, Caucasian, male, 6' 1" and weighed 235 lbs at the time (now I'm at 225 lbs) and have never had any major health problems including allergies until this occurred. After the diagnosis I began having fasciculations in my calves, feet, hands, face, neck and back intermittently. Additionally, I had intermittent bouts of vestibular problems (feeling off-balance), blurred vision primarily in my left eye, headaches, and extreme tension in my forehead and temple region where it felt like someone was pulling my skin from behind my ears. This continued throughout November and most of December before I started improving slowly. By March, my symptoms were all but gone except for chronic sinusitis.

Two weeks ago, I've had a relapse, albeit not nearly as severe as before. I have intermittent pain (cramping or dull pain) in my calves, feet, and forearms but really annoying paresthesia in across my face and head spanning several cranial nerves. I also have had some vestibular issues. Again these aren't as severe as before but are extremely annoying.

From all the research and reading I have done, my symptoms do not fit prediabetic neuropathy at all. I've come up with a couple of possibilities and would like anyone's opinion before I meet up with neurologist again in August. I've always been a bit of drinker averaging about 8 beers (never hard alcohol) usually once a week in a social setting since I was 20. I never drank at home. I've noticed that when I would even have a couple of beers, my symptoms would become noticeably worse when present but 2-3 days after drinking. Obviously, alcohol is toxic so I keep my alcohol consumption minimal (I haven't been intoxicated since November). Opinions that I could have alcoholic neuropathy even though I'm not a daily-consuming alcoholic? Second, I had my first two fillings (amalgam) put in in September three weeks before my initial symptoms began. Opinions on chemical posioning (mercury?). At the same time, I had a pretty nasty upper respiratory infection. Could this all be some weird post-viral syndrome?

I'm not looking for a diagnosis but some opinions and ideas that I can bring up with my doctors. Something obviously has happened to me last fall and I'm trying to figure out what that might be. Are these "flare-ups" something I'm going to have to continue to deal with it? Any recommended strategies to cope with the symptoms? I'm not currently on any medications.

Thanks in advance,

Matt

 
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Old 07-17-2009, 09:15 PM   #2
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Re: Seeking opinion regarding cause of peripheral neuropathy

I am 62 years old and have been in pain since I was 41 years old. I have been to 26 different doctors including Mayo Clinic. When I came down with this I was on a strict healthy diet and was runing 2-3 miles per day, 7 days a week. Had never been in better health in my life. Then this. All I have ever gotten from doctors is a hunch of the sholders and an "I don't know why" or how to treat it, so lets give it a guess. I have been in severe pain every hour awake for 1/3 of my life and I see no relief in sight except death. Hopefully this will not follow be to heaven if I make it there.

 
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Old 07-18-2009, 02:07 AM   #3
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Re: Seeking opinion regarding cause of peripheral neuropathy

Nemotin: Hi there. I have had peripheral neuropathy for almost 8 years and the best I can figure is that it's from years of undiagnosed diabetes. Found this out out when my feet would hurt especially after drinking. Would happen mostly about 12 hours later. The pain is always there now even without drinking a drop. I'm on 8 neurontin a day plus percocet for breakthrough pain, esp at night. I woke up today and my feet decided to hurt all day for no good reason. My blood sugar readings are perfect now since I take Januvia, but still the pain. I have always had severe pain in my right little toe and now in the base of my left big toe that no drugs can touch. Was just tested for gout but it came back negative. Sometimes it's pure hell, but goes away after about an hour. Don't know why that happens. When it does, my legs, including the thighs just cramp and twinge like crazy. This whole thing is such a drain sometimes because otherwise I feel really good. I'm a 62 year old woman who feels shackled with this condition and just praying the pain will go away and I'm just left with the numbness, which I also have. Good luck guy and keep trying to find what works for you since everyone is different. If you don't get answers, try another doctor. Usually they aren't a whole lot of help really since it's such an elusive disease. Anyway, hang in there-you're not alone. This board has been a lifeline for me and many others. Do a search, which should be helpful. Take care, Joyce.

 
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Old 07-18-2009, 07:48 AM   #4
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Re: Seeking opinion regarding cause of peripheral neuropathy

Hi GlenS and Tight Socks. I'm sorry to hear about your conditions. After searching several message boards, it seems that many people suffer from idiopathic neuropathy. I'm a research biologist by training (almost finished with my Ph.D.), and I don't like the notion of just chalking it up to something unknown. That is way too easy and many (not all) need to do a better job of investigating idiopathic conditions. There obviously has to be an underlying cause. From my limited research and my experience, I think that my symptoms were caused by the after-effects of a virus and my immune system began attacking my nerves. Like you GlenS, I was running 4-5x a week and working out 3x a week. My weight has fluctuated since I stopped playing baseball but I've never been more than 30 lbs overweight, and that's why the diagnosis of prediabetic neuropathy did not fit in my mind. Additionally, diabetes-related neuropathy typically starts in the feet and legs and not the hands and arms in my case. Also, I don't believe extreme fasciculations are a typical symptom.

GlenS, can you remember any events (illness, injuries, allergies, etc..) or exposures (heavy metal, pesticides, etc..) that you might have had before your condition? Are you taking multivitamins and antioxidants? I've found they really have helped me out. I've stopped consuming and have limited my alcohol intake as well.

Tight Socks (Joyce), my symptoms are similar to yours with regards to my legs. I've found that exercise really helps out but that can be difficult when you are in pain and have fatigue. I've been fortunate thus far that my symptoms are not affecting pain receptors.

I'm pretty sure that my relapse recently has been related to an antibiotic I was taking for prostatitis. I was originally on a two-week course of Bactrim which helped then prostatitis symptoms resurfaced so I was switched to two weeks on Cipro. Like an idiot, I didn't research the drug enough and later found out that it is known to cause peripheral neuropathy. I've been off of it for three days and I'm starting to get better.

I hope that you both are able to find relief from your symptoms. I wish you the best.

Matt

 
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Old 07-18-2009, 02:27 PM   #5
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Re: Seeking opinion regarding cause of peripheral neuropathy

Hi, I also believe your symptoms don't match up with typical prediabetic diagnoses, also being that your glucose tolerance test was normal, I find it strange they even come up with that, perhaps if insulin levels were drawn and found to high that would only mean that you were on the road to become prediabetic, the glucose tolerance test shows when you are already there, but negative readings from the GTT throws that theory right out the door.

With the amout you used to drink, no way known could alcohol be related to your troubles, it certainly can aggravate pre existing nerve damage, patients with alcoholic neuropathy usually have very low B1 levels.

My best bet would be viral at first [ seeing it was a rather quick recovery] then aggravated again by the Cipro.

best of luck to you

Aussie

 
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Old 07-18-2009, 05:47 PM   #6
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Re: Seeking opinion regarding cause of peripheral neuropathy

Quote:
Originally Posted by nemotin View Post
GlenS, can you remember any events (illness, injuries, allergies, etc..) or exposures (heavy metal, pesticides, etc..) that you might have had before your condition? Are you taking multivitamins and antioxidants? I've found they really have helped me out. I've stopped consuming and have limited my alcohol intake as well.

Matt
I had bypass surgery about a year before. No drinking since my early 30's. I have taken multi vitamins always. I do take C, D, E, B12, folic acid and fish oil. Recently started L-Arginine, 5 grams per day. The only noticable thing I've seen is after starting the L-Arginine I have more energy and my libido has came back from zero the past three years. I've been tested for heavy metals. I did work with molten lead from about 25 to 35 years old. Also worked with Molybdenum disulfide and tungsten for about a year at age 22. Have had several thallium stress tests but none before PN started.

 
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Old 07-19-2009, 09:57 PM   #7
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Re: Seeking opinion regarding cause of peripheral neuropathy

Matt - I don't know much about this, but because one of the guys in my neuropathy support group has CIDP (Chronic Inflamatory Demyelinating Polyneuropathy), I have heard that this type of neuropathy can come and go like you describe, often with long periods of remission. You may want to google CIDP. - Ruby

 
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Old 06-25-2011, 04:45 AM   #8
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Re: Seeking opinion regarding cause of peripheral neuropathy

Hi Glen,

I have been in pain now for over 10 years, I like you do not see any light at the end of the tunnel. Suicide is constantly on my mind, I know my family would be upset, however if they had my pain day and night, I'm sure they would have a different opinion. I use to be afraid of dying but no more. My pain is like someone is cutting the tops of my feet off with a blunt box cutter stabbing with hot nails and pouring pure alcohol on them. That's my life, who could blame me for ending it living with that. Sorry to say these words, it appears we are in the same boat.

 
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Old 06-26-2011, 04:47 PM   #9
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Re: Seeking opinion regarding cause of peripheral neuropathy

I saw a quote that ;
"When you are at the end of your rope, tie a knot and hang on."

I took pain med for first time last night. The relief for that time helped me tremendously!

Mine is like my toes and bottoms of feet are on fire while being stabbed with needles and broken glass! Sometimes pain in calves and hands.
YOU ARE NOT ALONE! ! !

 
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Old 06-27-2011, 06:46 AM   #10
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Re: Seeking opinion regarding cause of peripheral neuropathy

Hi everyone,
I wanted to give you all an update on my condition. After many tests, several thousands of dollars, and no diagnosis, I was at a lost and started to really research causes of idiopathic neuropathy. Given the sudden onset of my symptoms and overall good health before my symptoms began, I felt that I was exposed to something and that was the underlying culprit. I changed my diet, going gluten-free and eliminating all carbonated beverages, diet sodas, alcohol, etc... Still symptoms persisted. I tried a number of herbal supplements and vitamin regimes, which did seem to lessen my symptoms but not eliminate them.

Then last February, I decided to have my mercury fillings removed and replaced. My doctors thought I was crazy and would not prescribe any chelation therapy because they did not believe mercury poisoning from fillings was the problem. Consequently, I ordered chelation drugs online and began three rounds of chelation treatment. Although it took around 9 months, I can now say that I'm symptom-free and back in good health. No more shooting nerve pains, loss of senses, headaches, sinus infections, blurred vision, dizziness, fatigue, facial flushing, etc... I had to self-diagnose (which can be dangerous) but I'm convinced that I'm extremely sensitive to mercury and the amount of mercury leaching from the amalgam fillings I had caused my chronic problems. My advice is to always listen to your body and never give up looking for the answer because MDs don't know everything and often have difficulty thinking "outside the box" when symptoms don't fit a typical presentation that they learned in med school.

What is frustrating to me is when a doctor will not listen to your opinion and ideas because you didn't go to medical school and they did. I honestly had my neurologist say this to me. Unfortunately, she didn't realize that I'm well versed in biology and have a doctorate in the field. Don't be afraid to speak up.

Best,

Matt

 
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Old 06-27-2011, 06:50 AM   #11
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Re: Seeking opinion regarding cause of peripheral neuropathy

Hi bronze_aussie,
Have you tried Benfotiamine? I took this (and continue to take) and it helped lessen the severity of my symptoms.

Best,

Matt

 
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Old 06-27-2011, 09:32 PM   #12
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Re: Seeking opinion regarding cause of peripheral neuropathy

Awesome Matt! Thanks for posting your success. - Ruby

 
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Old 07-08-2011, 12:47 AM   #13
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Re: Seeking opinion regarding cause of peripheral neuropathy

Quote:
Originally Posted by nemotin View Post
Last October, I began having neurological problems seemingly "out of the blue". My symptoms began with paresthesia in my right pinky and ring fingers on the finger on my left hand three days later. The sensations were intermittent and not severe at the time. A week after my initial symptoms I began experiencing sharp pains in my forearms (much like cramping) and shooting pains that ascended my right arm into the shoulder. Also, I was experience severe fatigue. At that point, I went to my GP and was referred to a neurologist. I was able to get into the neurologist three weeks after my symptoms began. At the time of the first visit, I also was having intermittent paresthesia in my legs and feet below the knees. In the next week, I had MRIs (with contrast) of my head and neck, EMG, and a full blood work-up including tests for Lyme Disease, HIV, Lupus, etc...which were all negative except the EMG confirmed both sensory and motor neuropathy in all four limbs and MRIs showed chronic sinusitis. Blood tests showed that the only slightly elevated values were blood glucose levels (102 mg/dL) and HbA1C (6.1) followed by arsenic at 56 ug/L. This was followed up with a 3 hr glucose test which was normal.

I was diagnosed with prediabetic neuropathy (which I don't believe my symptoms are consistent with) with a recommendation to control by blood sugar and exercise more (I has already running 4-5x a week before this all began). Also, I began taking multivitamins and flaxseed oil. I'm 30 years old, Caucasian, male, 6' 1" and weighed 235 lbs at the time (now I'm at 225 lbs) and have never had any major health problems including allergies until this occurred. After the diagnosis I began having fasciculations in my calves, feet, hands, face, neck and back intermittently. Additionally, I had intermittent bouts of vestibular problems (feeling off-balance), blurred vision primarily in my left eye, headaches, and extreme tension in my forehead and temple region where it felt like someone was pulling my skin from behind my ears. This continued throughout November and most of December before I started improving slowly. By March, my symptoms were all but gone except for chronic sinusitis.

Two weeks ago, I've had a relapse, albeit not nearly as severe as before. I have intermittent pain (cramping or dull pain) in my calves, feet, and forearms but really annoying paresthesia in across my face and head spanning several cranial nerves. I also have had some vestibular issues. Again these aren't as severe as before but are extremely annoying.

From all the research and reading I have done, my symptoms do not fit prediabetic neuropathy at all. I've come up with a couple of possibilities and would like anyone's opinion before I meet up with neurologist again in August. I've always been a bit of drinker averaging about 8 beers (never hard alcohol) usually once a week in a social setting since I was 20. I never drank at home. I've noticed that when I would even have a couple of beers, my symptoms would become noticeably worse when present but 2-3 days after drinking. Obviously, alcohol is toxic so I keep my alcohol consumption minimal (I haven't been intoxicated since November). Opinions that I could have alcoholic neuropathy even though I'm not a daily-consuming alcoholic? Second, I had my first two fillings (amalgam) put in in September three weeks before my initial symptoms began. Opinions on chemical posioning (mercury?). At the same time, I had a pretty nasty upper respiratory infection. Could this all be some weird post-viral syndrome?

I'm not looking for a diagnosis but some opinions and ideas that I can bring up with my doctors. Something obviously has happened to me last fall and I'm trying to figure out what that might be. Are these "flare-ups" something I'm going to have to continue to deal with it? Any recommended strategies to cope with the symptoms? I'm not currently on any medications.

Thanks in advance,

Matt

 
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Old 07-08-2011, 01:03 AM   #14
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Re: Seeking opinion regarding cause of peripheral neuropathy

Matt,

Alcohol on a regular basis such as your intake can cause PN. I too enjoyed a beer starting in my late teens. I was 39 when diagnosed with PN, I swam 2 kilometers 3 times a week, ran 5 km everyday and was careful with my diet. I did enjoy a beer, I thought running, swimming, watching what one ate etc would counteract the alcohol intake. I was wrong as soon as its down your throat the damage is done. Ive lived with this very cruel disease now for 12 years it doesn't get any better, there is no cure just half hearted relief. I have a friend who continues to consume high intakes of his favourite drop. he said to me one day is numbness part of your problem I said yes its the start, then the sharp stabbing pain continues there after until your buried. He laughed and said I'll just have an operation, I said no such thing old buddy, he still drinks. I don't drink anymore, the pain I suffer after a few isn't worth it, so now its spring water for me. Watch the next generations of children closely, absolutely guaranteed PN will be mention more often as a result of too much booze intake.

 
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Old 07-09-2011, 06:53 PM   #15
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Re: Seeking opinion regarding cause of peripheral neuropathy

Quote:
Originally Posted by nemotin View Post
Hi everyone,
I wanted to give you all an update on my condition. After many tests, several thousands of dollars, and no diagnosis, I was at a lost and started to really research causes of idiopathic neuropathy. Given the sudden onset of my symptoms and overall good health before my symptoms began, I felt that I was exposed to something and that was the underlying culprit. I changed my diet, going gluten-free and eliminating all carbonated beverages, diet sodas, alcohol, etc... Still symptoms persisted. I tried a number of herbal supplements and vitamin regimes, which did seem to lessen my symptoms but not eliminate them.

Then last February, I decided to have my mercury fillings removed and replaced. My doctors thought I was crazy and would not prescribe any chelation therapy because they did not believe mercury poisoning from fillings was the problem. Consequently, I ordered chelation drugs online and began three rounds of chelation treatment. Although it took around 9 months, I can now say that I'm symptom-free and back in good health. No more shooting nerve pains, loss of senses, headaches, sinus infections, blurred vision, dizziness, fatigue, facial flushing, etc... I had to self-diagnose (which can be dangerous) but I'm convinced that I'm extremely sensitive to mercury and the amount of mercury leaching from the amalgam fillings I had caused my chronic problems. My advice is to always listen to your body and never give up looking for the answer because MDs don't know everything and often have difficulty thinking "outside the box" when symptoms don't fit a typical presentation that they learned in med school.

What is frustrating to me is when a doctor will not listen to your opinion and ideas because you didn't go to medical school and they did. I honestly had my neurologist say this to me. Unfortunately, she didn't realize that I'm well versed in biology and have a doctorate in the field. Don't be afraid to speak up.

Best,

Matt
Though I have never had a drink of any sort, I feel as though we have many similar symptons. I too had mercury removal performed. I only had it removed from the side of my mouth where I was having extreme jaw pain. Unfortunately, I have seen no relief after the mercury removal.

Keep us posted on here from time to time. Good news is always welcomed here on the boards!

 
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