My Frustrating SFN Story
 

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.

Good approach
 

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.

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.

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.

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.

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. :o

Benfotiamine
 

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!