[JimD]

I have been reading this forum for a few months now and just wanted to get my story out there to maybe find some help. It has been extremely frustrating when every test I take shows nothing but yet my symptoms persist. I am grateful on one hand that I seem to be otherwise healthy, but I almost wish we would find something wrong so at least I might be able to correct it. It started out of nowhere back in September. I woke up one morning and felt my toes slightly numb and frozen feeling and tingling from my feet to my knees. Prior to this I felt no symptoms and had been a completely healthy and very active person. I tried to ignore it for a few days thinking it would go away but it never did. Went to my doctor and she had some bloodwork done, all of which was normal. The feeling persisted for another 2 weeks with burning feeling whenever I had shoes on. I was freaking out thinking I had MS, being that a cousin of mine does. I went to see my first neurologist and his initial exam and spine MRI’s did not reveal anything. He said to wait another week to see if it would go away and if not he would send me for an EMG/NCS test. After that test was normal, he pretty much gave up on me so I went to another neurologist who has been great so far. She sent me for extensive blood work checking for everything.

One of the three abnormal results was low vitamin D, but it was 29 ng/ml and the standard range is supposedly 30 – 100 ng/ml. The second was my Vitamin B6 level which was really high at 127.2 ng/ml when the standard range is 2.1 -21.7 ng/ml. This may have been skewed because about a month before, I started taking B-Complex with 100mg of B6 in it thinking it would help my condition and I only stopped it two days before the test. I had only been taking a multi-vitamin with 3mg of B6 in it before all of this started. Once I learned that B6 Toxicity can cause PN, I stopped the B-complex and the multi-vitamin. I will get my B6 levels checked in the next week or two to see if it came down. The third was a slightly high number on the 2 hour glucose tolerance test which could indicate prediabetes. I now avoid sugar, started eating healthier and upped the exercise.

My Neurologist sent me for a QSART test and that was normal. I have been taking Gabapentin since November and am currently up to 1500 mg a day. I don’t know whether it is working or not because I still have my symptoms. The one thing I can say that my neurologist found to be the opposite of normal SFN symptoms, I get total relief when I am lying down in bed after about 15 minutes. I usually don’t feel any discomfort at night and feel perfectly normal until the minute my feet touch the ground in the morning. Over the last four and a half months my symptoms have been pins and needles, burning, freezing feeling, numb feeling, sore achy feeling, all in both feet, all of which happen at various times. Sometimes just one at a time, and sometimes two or three at a time.

I also take:
5000 IU Vitamin D3 (Once a day)
2000 Micrograms Methyl B-12 (Once a day)
1000 mg Acetyl L-Carnitine (HCI) with
600 mg Alpha Lipoic Acid (Once a day)

I am going to start Fish oil this week. I am getting very frustrated as my symptoms are not getting any better. Is there anything else I should be taking? Any comments or suggestions about this would be a great help!

I have learned a lot from this site so far. Especially that I am not alone with this. Nobody that I know including my family, friends, or co-workers have never heard of anybody who has this and that can be frustrating.
I just had a second MRI today which was of my thoracic spine. Not expecting any answers from it.

[zkrp01]

It sounds like you have a pretty good handle on what you can do to help yourself. If you read here, you know about exercizing to tolerance. Getting adequate sleep is also necessary. (5 hrs). You didn't say anything about alcohol but treat it as you would sugar. This disease will force you to gain patience as you go slowly along. Good Luck, Ken in Texas.

[Ragtop262]

Hi Jim, Sounds like we have pretty similar conditions. I'm also currently taking 1500/day of Gabapentin. (I was up to 1800/day, but was doing better - so I went down to 1500, then tried 1200. At 1200 I found out pretty quick that the Gabapentin was in fact working after all - so I went back up to 1500.) I'm also on a pretty broad supplement regimen.

As Ken said, you seem to be headed in the right direction. If you want to up your game in the supplement department, you might want to consider taking some magnesium (an absorbable form, not Mg Oxide), and benfotiamine as the next steps. (Magnesium is good for general nerve health, and many people get significant pain relief from benfotiamine - a stronger form of thiamine.)

The one thing you should try to do though is add the supplements in one at a time, so you know what they are doing for you (if anything). I kind of did the shotgun approach, now I'm not sure which are helping and which aren't.

[en bloc]

Hi Jim,

I think it's important to have that B6 rechecked as this may be the cause of your problem. B6 can irritate the nerves, particularly the small peripheral nerves in the feet...which is exactly what you have going on.

If this is back to normal, then I would hope they do a skin biopsy to check for small fiber neuropathy.

You say you don't know if the Gabapentin is working...have you had ANY improvement when starting it or after increasing the dose each time? You should notice 'something'. If not, then you might consider moving on to something else and not waste you time. Most people at least notice some relief and then adjust the dose until they get to a comfortable level.

You said she did a QSART...why? You don't mention any autonomic symptoms, yet this is a test for autonomic neuropathy. Do you know why she ran this test? Are you having any other unusual symptoms with your BP, heart rate, sweating, etc?

I know you are likely frustrated and worried at the unknown condition causing you pain and such. It's a slow process but we'll help you get through it as best we can.

[Patrick Winter]

Originally Posted by JimD

I have been reading this forum for a few months now and just wanted to get my story out there to maybe find some help. It has been extremely frustrating when every test I take shows nothing but yet my symptoms persist. I am grateful on one hand that I seem to be otherwise healthy, but I almost wish we would find something wrong so at least I might be able to correct it. It started out of nowhere back in September. I woke up one morning and felt my toes slightly numb and frozen feeling and tingling from my feet to my knees. Prior to this I felt no symptoms and had been a completely healthy and very active person. I tried to ignore it for a few days thinking it would go away but it never did. Went to my doctor and she had some bloodwork done, all of which was normal. The feeling persisted for another 2 weeks with burning feeling whenever I had shoes on. I was freaking out thinking I had MS, being that a cousin of mine does. I went to see my first neurologist and his initial exam and spine MRI’s did not reveal anything. He said to wait another week to see if it would go away and if not he would send me for an EMG/NCS test. After that test was normal, he pretty much gave up on me so I went to another neurologist who has been great so far. She sent me for extensive blood work checking for everything.

One of the three abnormal results was low vitamin D, but it was 29 ng/ml and the standard range is supposedly 30 – 100 ng/ml. The second was my Vitamin B6 level which was really high at 127.2 ng/ml when the standard range is 2.1 -21.7 ng/ml. This may have been skewed because about a month before, I started taking B-Complex with 100mg of B6 in it thinking it would help my condition and I only stopped it two days before the test. I had only been taking a multi-vitamin with 3mg of B6 in it before all of this started. Once I learned that B6 Toxicity can cause PN, I stopped the B-complex and the multi-vitamin. I will get my B6 levels checked in the next week or two to see if it came down. The third was a slightly high number on the 2 hour glucose tolerance test which could indicate prediabetes. I now avoid sugar, started eating healthier and upped the exercise.

My Neurologist sent me for a QSART test and that was normal. I have been taking Gabapentin since November and am currently up to 1500 mg a day. I don’t know whether it is working or not because I still have my symptoms. The one thing I can say that my neurologist found to be the opposite of normal SFN symptoms, I get total relief when I am lying down in bed after about 15 minutes. I usually don’t feel any discomfort at night and feel perfectly normal until the minute my feet touch the ground in the morning. Over the last four and a half months my symptoms have been pins and needles, burning, freezing feeling, numb feeling, sore achy feeling, all in both feet, all of which happen at various times. Sometimes just one at a time, and sometimes two or three at a time.

I also take:
5000 IU Vitamin D3 (Once a day)
2000 Micrograms Methyl B-12 (Once a day)
1000 mg Acetyl L-Carnitine (HCI) with
600 mg Alpha Lipoic Acid (Once a day)

I am going to start Fish oil this week. I am getting very frustrated as my symptoms are not getting any better. Is there anything else I should be taking? Any comments or suggestions about this would be a great help!

I have learned a lot from this site so far. Especially that I am not alone with this. Nobody that I know including my family, friends, or co-workers have never heard of anybody who has this and that can be frustrating.
I just had a second MRI today which was of my thoracic spine. Not expecting any answers from it.

JIm, Your situation reminds me of mine in a lot of ways. I didnt fail the Oral Glucose Tolerance test though. I had the same Vitamin D numbers and I had a very high B6 from taking a B-Complex supplement. I dont think that the Vitamin D numbers being low are your problem. At 29, its merely a nuance. I do supplement with Vitamin D supplement because of it now but it doesn't help with the pain or anything. In my case my D was low because i avoid the sun because of dehydration issues I have.

I agree with comments above. Vitamin B6 is the one B supplement you really don't want to be taking when dealing with nerve issues. GO off that for a while and see if things improve. B12, B1 and B2 are all fine though. Most notably, add B1(Benfotiamine) if you are experiencing SFN pain. I recommend at least 300mg a day. Almost everyone I know with some form of peripheral neuropathy swears by it as one of the most essential vitamins for pain relief and it is very safe even in high doses.

Also, make sure you are taking R-Lipoic Acid not Alpha Lipoic Acid. the latter is poorly absorbed and won't offer much relief. R-Lipoic is better absorbed. get the Life Extension or Doctor's Best brand for the best version of this supplement.

Also, consider adding magnesium. Pretty much everyone walking this planet doesnt get enough magnesium in their diet so its necessary regardless of what you suffer from.

Did you also have Fasting glucose and A1C levels done? An oral glucose tolerance test is a good test but those other tests would confirm any blood sugar issues. I know if people who failed the OGTT test and then a month later took it and passed it. Some doctors don't like the OGTT test anymore and would rather use A1C and Fasting. The best bet is to have all 3 tests done. See an endocrinologist if you haven't.

Understand, I am just bringing these things up because your situation reminds me of mine in a lot of ways. i am not a doctor. These are things I learned along the way in trying to get things figured out. Hope it helps in some way.

[Sandy04029]

Originally Posted by Patrick Winter

JIm, Your situation reminds me of mine in a lot of ways. I didnt fail the Oral Glucose Tolerance test though. I had the same Vitamin D numbers and I had a very high B6 from taking a B-Complex supplement. I dont think that the Vitamin D numbers being low are your problem. At 29, its merely a nuance. I do supplement with Vitamin D supplement because of it now but it doesn't help with the pain or anything. In my case my D was low because i avoid the sun because of dehydration issues I have.

I agree with comments above. Vitamin B6 is the one B supplement you really don't want to be taking when dealing with nerve issues. GO off that for a while and see if things improve. B12, B1 and B2 are all fine though. Most notably, add B1(Benfotiamine) if you are experiencing SFN pain. I recommend at least 300mg a day. Almost everyone I know with some form of peripheral neuropathy swears by it as one of the most essential vitamins for pain relief and it is very safe even in high doses.

Also, make sure you are taking R-Lipoic Acid not Alpha Lipoic Acid. the latter is poorly absorbed and won't offer much relief. R-Lipoic is better absorbed. get the Life Extension or Doctor's Best brand for the best version of this supplement.

Also, consider adding magnesium. Pretty much everyone walking this planet doesnt get enough magnesium in their diet so its necessary regardless of what you suffer from.

Did you also have Fasting glucose and A1C levels done? An oral glucose tolerance test is a good test but those other tests would confirm any blood sugar issues. I know if people who failed the OGTT test and then a month later took it and passed it. Some doctors don't like the OGTT test anymore and would rather use A1C and Fasting. The best bet is to have all 3 tests done. See an endocrinologist if you haven't.

Understand, I am just bringing these things up because your situation reminds me of mine in a lot of ways. i am not a doctor. These are things I learned along the way in trying to get things figured out. Hope it helps in some way.

I agree with the suggestion of Benfotiamine. I have been suffering with SFN since January of 2011. I take Lyrica 600 mg per day, Benfotiamine 600 mg per day. 100 mg Amtryptaline at night, alone with 4-6 10 mg Hydrocone per day for the pain. I ran out of my Benfotiamine and didn't re-order it, boy did I suffer!! So, give it a try. It helps, if even just for the short term. I'll take any relief available!

[maax101]

I have been dealing with this foot pain and redness in the face for 20 years. All of the above plus way too many drugs have been tried. Nothing helps I am so sick and tired of this I do not know what to do anymore! I just sit at home and dread the whole day!!

[ShaggyChic_1201]

Originally Posted by Patrick Winter

I agree with comments above. Vitamin B6 is the one B supplement you really don't want to be taking when dealing with nerve issues. GO off that for a while and see if things improve. B12, B1 and B2 are all fine though. Most notably, add B1(Benfotiamine) if you are experiencing SFN pain. I recommend at least 300mg a day. Almost everyone I know with some form of peripheral neuropathy swears by it as one of the most essential vitamins for pain relief and it is very safe even in high doses.

Also, make sure you are taking R-Lipoic Acid not Alpha Lipoic Acid. the latter is poorly absorbed and won't offer much relief. R-Lipoic is better absorbed. get the Life Extension or Doctor's Best brand for the best version of this supplement.

Also, consider adding magnesium. Pretty much everyone walking this planet doesnt get enough magnesium in their diet so its necessary regardless of what you suffer from.

Thanks so much for this info. I'm on 1800 mg of gaba (and growing) , plus D3 and fish oil, but nothing else for PN. I also take 150 mg of Pristiq, which I couldn't stop even if it was making my pain worse.

I'm going to order the two supplements you suggested. Since that will be the only change, I'll report back on how I'm doing. Hope this isn't considered hijacking a thread, which I don't want to do.

[caroline2]

JimD, I see you are taking a good amount of supps many others take here. I've talked about my friend who has been dealing with neuropathy for 15 yrs from statins. She's done many years of gabapentin and she's mentioned side effects she has with this drug. We are in a bridge group with ladies and most of my friends are taking grape seed ex and so Ellen decided to go on it and now going on close to 5 yrs she says, I think it's more like 4 but I don't keep track of everyone's history on grape seed. I'm in my 21st year.

Anyway, she is off gabapentin and reports how much better she is doing. Whether years of gaba did her good, I have no clue. But she's doing good now...I believe she takes 200mg daily.

If there are thoughts of diabetes, grape seed ex is also reported to reduce diabetic symptoms. C

[JimD]

Caroline, thanks for the info on the grape seed ex. I had been thinking of taking it. I will definitely try it. Any brand preference?

ShaggyChic, don't worry about hijacking the thread. Any and all info we can get will be helpful!