Going to add Benfotiamine and R-Lipoic Acid
 

Thanks so much for this info. I'm on 1800 mg of gaba (and growing) :p, 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.

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

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!

JimD, many are good but don't buy the cheapest and you don't have to buy the priciest. I've used many and like vitacost 200mg grape seed ex. vitacost also sells muscadine grape seed and I use it too, off and on. It's high in resveratrol and it comes in 500mg capsule.

The friend I mentioned uses costco brand and she's fine with it...it's not my favorite.

Hi Jim!

We have almost exact stories. Sudden onset, previous good health, all good labs, high b6, low Vit D, and possibly borderline questionable sugar.

But my symptoms are worse at night when I lay down like the typical SFN presentation.

Good luck pursuing more answers!

Janie, I also had my symptoms kick off after a minor whiplash type injury. Have had all MRIs showing nothing since then just bulging discs. But I always wondered about the connection.

Update
 

Just wanted to update my condition. I had a Thorasic spine MRI which was normal. I just had my B6 level re-checked and it came back at 9.2 ng/mL which is in the normal range. It was at 127.

Went to the podiatrist and he gave me Methylprednisolone to take for 6 days and it didn't really do anything. I also had a Doppler test on my legs to test the blood flow to my feet which came back normal.

Last weekend my symptoms seemed to lighten to the point where I finally thought I was getting better. I actually felt almost normal again for 4 days. Then by Wednesday the symptoms came back seemingly worse than before.

And now today after all of the tests and medicine and vitamins, it has now been 6 months and I feel the same as when it started. My Neurologist said we could do a lumber puncture to test spinal fluid but I am reluctant to do that yet. I kind of feel like I'm at a dead end now with my only hope is that the vitamins will slowly start to heal the nerves. But its hard to think that they are healing if I can't find what is causing it in the first place.

Jim - just wanted to let you know that my husband too is the opposite to most people with PN; like you his symptoms improve when he goes to bed. In fact when he is really bad he will lay down during the day just to get some relief.

Once he has been up for maybe an hour the tingling/burning starts in his hands, progresses to his feet and by late afternoon he is just a mess some days.

I have often wondered why, but have never been able to get a definitive answer.

He is currently on a Fentanyl patch, after the Gabapentin stopped working. They have now added Lyrica to the "cocktail" starting last week and things do seem to be slowly improving.

If you ever find the answer please post!:)

Thanks, Linda

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!!

Hi Jim. Your symptoms sound very similar to mine, including fairly rapid onset and worse pain during the day. For me, the burning peaks about late morning or early afternoon, then starts to subside so that I 'only' have numbness, some tingling, and mild painless shocks every few minutes at night. My neuro agrees that this is the opposite of what is typical. He says the cause is pre-diabetes/early diabetes (my fasting glucose and A1C were pre-diabetic, but my 2-hr OGTT was diabetic). However, my endo and primary doctor disagree and say the cause is unknown. The numbness is up to my ankles, but when the burning pain really gets going it can be almost up to my knees. I've been suffering for about 11 months, and am fairly new to this forum.