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,

I just responded with similar information to the "Anxiety or PN" query here, so I'll be brief. SFN is not usually picked up by an MRI, EMG, or nerve conduction studies. Only a skin punch biopsy is definitive. (And there are many people on this site who test negative and still have symptoms.)

However, I urge you to get the test. This may mean switching to a Neuro who is more knowledgeable about SFN. The next step would be testing for autoimmune issues.

I have to say the timing of your symptoms is atypical....the onset of my sensory symptoms are completely synced with dusk.....I would be interested to see what others say about this.

Best,

Sylvie

Thanks everyone for all of your comments. It is so great to finally communicate with people going through the same issues. I will definitely add the benfotiamine from everyone's advice. I would like to add the magnesium but I seem to remember reading on here somewhere a comment from MrsD that the magnesium would cancel out the gabapentin. Am I remembering that correctly?

Patrick - I did have the fasting glucose and it was normal. I have not had the A1C. I did get a glucose monitor and have been checking my levels periodically since the test and everyone of my readings have been normal levels. I hoping that it is because of my changed diet and increased exercise over the last few months.

en bloc - I don't know why she had me have the QSART test. I will ask at my next appointment. I do not have any of the BP, heart rate or sweating issues. As far as the gabapentin, it seems when I increase the dose, I feel better for a day or two and then it gets worse again. Not sure if its just in my mind or what. I am increasing my dose to 1800mg/day this weekend to see if it helps.

I am going to a podiatrist next week just to rule anything else out on the recommendation of my neurologist. Thanks to everyone again. I will keep updating as I know how beneficial it has been to me to see others progress.

I believe Magnesium is OK to take as long as it is a few hours between Gabapentin doses. I take magnesium in the afternoon and Gabapentin 200mg at night with no reaction.

If your glucometer is showing normal readings I wouldn't sweat the pre diabetes stuff. A lot of doctors hate the OGTT because who actually sits and chugs down 75 grams of pure sugar anyway? I personally get a worse blood sugar spike from potatoes than i do sugar. i would like to see them do a OGTT with a baked potato instead LOL. Kidding? Maybe, maybe not.

There are two theories on this new "prediabetes" diagnosis. 1. Its a good way to scare you into changing your diet. or 2.It's a good way for big pharma to push metformin on patients who probably don't need it. It's similar to the statin hysteria that has been going on for years now. We shall see i guess. I think people can get a little nuts over the "magic numbers" we set for blood levels. When we start seeing extremes then let's dig into it. That's the approach of my cardiologist and I appreciate that approach.

Your story sounds eerily similar, Jim.

One of my several theories on what has caused my neuropathy is that it's something spinal that is not yet understood and/or not yet detectable through MRIs.

Like you, I'm usually pretty symptom-free when I wake up, although I do have this odd "buzzing" going on. As soon as I start moving, though, it goes away (and my back usually hurts when I first wake up). As the day progresses, and especially in the evening, the burning will start setting in. I usually start feeling some relief when I go to bed, although not always. Early on, I was especially had a hard time sleeping.

Twice now in my life I've had two instances of multi-week increased intercranial pressure. That's my diagnosis BTW. Doctors never put a name to it. I felt like my brains were trying to explode out of my head. It wasn't painful, just this horrible pressure like sensation. I also experienced brain fog with it. When I first experienced it back in the 80s, the neuro believed it was related to cervical problems I had which have gotten progressively worse. I had another episode of it in August of 2013, and my neuropathy set in two months later. I also hurt my neck in October. I've had MRIs from top to bottom showing a lot of problems, but nothing that would cause neuropathy.

So I think it's a possibility this could all be spinal, and it's just not understood yet.

But ask me tomorrow, and I'll tell you something different.

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.

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

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!

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.