Sudden Acute Small Fiber Neuropathy with Pre-Diabetes

My Acute Neuropathy Story

To be as concise as possible, I’ll just give the facts with a timeline.

May 2016 - While at my office one day, I began having a sudden burning sensation in both of my forearms. Having no idea what it was, I left work early and went home. I took Benadryl thinking I was having an allergic reaction to something in my environment.

I began to see a long string of doctors. Finally making it to a neurologist, and having already self-diagnosed as neuropathy, I was given standard neurological tests and told everything, on the surface, looked fine. A battery of blood tests (heavy metals, multiple myeloma, etc) were ordered. Everything was normal except a high A1C and a low Vitamin D count. I was sent for an EMG. I asked about having a brain MRI and was told I didn’t need one.

EMG done of both legs and lower back. EMG found no neuropathy. I was perplexed because the extreme burning sensation told me otherwise. I later learned that Small Fiber Neuropathy could not be detected during an EMG.

I was also tested for Lyme, HIV, Syphilis and certain autoimmune markers.

Because the neurologist could not find anything unusual in a physical exam or blood tests, he chalked my issue up to a blood glucose problem. Advised me to see an endocrinologist. Put me on Gabapentin, which gave me cognitive issue, so later was moved to Cymbalta, which did give some relief. I was having extreme anxiety and depression because of the limiting nature of the pain so Cymbalta added a much needed mood boost, as well. I was told that the neuropathy may heal over time but there was no guarantee. Treating the symptoms was my only option, at the moment.

We ended up driving 8 hours round trip to the Cleveland Clinic for a second opinion. The neurologist I saw had reviewed all of the medical records I brought immediately prior to our appointment. We spent about an hour talking and doing a more through clinical exam. She remarked that I was “boring” neurologically and she couldn’t find anything wrong. She suggested a skin biopsy for confirmation of SFN.

The biopsy was performed and I received the results two weeks later. Severe sensory small fiber neuropathy in all 3 test sites (ankle, knee, thigh).

My question to you is this: Has anyone else experienced acute neuropathy in a similar fashion as myself? I’ve read of many cases of tingling and abnormal sensations developing after many years of uncontrolled blood sugar but not many people who have experienced neuropathy as severe and quickly as I have.

FYI that I’m now on Metformin for glucose intolerance and Victoza but my neuropathy has not gotten better.

  • Jamie

Hi James.

Sorry you are going through this and it is so debilitating.
Can I ask how high your a1c is?

Some people may be sensitive to sugar levels and have debilitating neuropathy at levels that other people don’t. I have read on this site of some people having severe complications even with a1c in the 5s. While others may not have any apparent problems.

Or this could be unrelated to diabetes? I am assuming that b-vitamin levels were all tested and are at mid-range or better? Another consideration could be that although A1c is not very elevated (A1c is only an average), that you are having spikes in blood sugar after eating. These spikes may be high enough to cause progressive damage.

Neuropathy, if it is blood sugar related, is known to be able to be reversed by strict normalization of blood sugars. However, the pain may get worse (during regeneration) before it gets better. Given the debility of your condition, this approach may be worth a try.

If one follows the teachings of Dr. Richard Bernstein, one considers that strictly normal blood sugar is 83 +/- 10, maintained at all times. This would be achieved with low carb eating, and meds as necessary. Use of a CGM (continuous glucose monitor - I like freestyle libre - which can be used for 2 weeks at a time) to see actual blood sugar behaviors could be very useful, alternatively frequent testing may be used.

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This is probably far-fetched, but was celiac disease ruled out? I know you mentioned autoimmune testing, but I bet that antibodies test was not ordered. Neuropathy is common in celiac disease which is systemic and not just a GI issue (often people are misdiagnosed with MS). Many celiacs display do not display traditional celiac GI symptoms. I oddly, when exposed to gluten, I get itching on my forearms, but no rash that can last for months.

Get tested before even considering a gluten free diet.

Another theory? New medications? I took Cipro (antibiotic) after a surgery. I suddenly developed nerve pain in my leg and foot (buzzing, electrical shock). It took six months to resolve. You can google the side effects of this drug.

Again, way out there…but you never know. Just hate for you to assume diabetes is the cause. Keep advocating for your health.

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My highest A1C, to date, was 6.5% but I suspect that it’s crept up .5-1% since then.

B6 and B12 levels were checked. My B12 was on the low side but nothing extraordinary. My B6 was not elevated (another cause of neuropathy). Since then, I’ve taken a B12 supplement given to me by my neurologist.

Since beginning to regularly monitor my morning, pre/post meal BG, I’ve noticed quite the pattern. My morning fasting is always elevated to between 110 and 120. In addition my post meal spikes have reached as high as 240. After a year of research and experience with this new condition, I’ve come to the conclusion that I’ve been in a pre-diabetic, which has now crept into the T2D stage, state for the last 4-5 years. This is the time frame which I continued to gain weight and started experiencing more fatigue and other minor health issues.

I have an uncle, 15 years my senior, who has had T2D for 10+ years, mostly uncontrolled, until recently. He experiences no neuropathy (as of yet) but has other diabetes complications. My nerves were probably more susceptible to damage so this turned into my first symptom.

I was not familiar with Dr. Bernstein’s teaching but I plan to educate myself. I may look into the CGM, as I tend to be very analytical anyway, so seeing a constant stream of data would help me adjust my eating habits.

Thanks for all the insight! Much appreciated!
-Jamie

As part of my research on the 100+ reasons for neuropathy; this is one of the only ones that I haven’t officially ruled out. Like most people, I assumed Celiac disease would have affected me since a young age but, that turns out is not always the case. In addition, I assumed that I would have always experienced GI issues. Turns out that is not always the case either.

I’m under the care of a GI doctor for Barrett’s Esophagus so I’ll be seeing him soon and ask for a tTG-IgA test to rule out Celiac.

In regards to the antibiotics, I had taken Cipro several times (many years in the past) as well as Levaquin. It was a long time ago so I did not associate it with the neuropathy although I knew that could be a potential cause. I will not longer take any of that antibiotic family, unless it’s life or death, as they destroy my stomach bacteria balance and usually cause terrible cramping.

That is a great article you attached. I’ve saved it and plan to discuss with the GI doc.

Please push for the complete panel. The TTG catches most celiacs, but it did not catch me! I test positive only to the DPG. Learn more about testing for celiac disease:

http://www.cureceliacdisease.org/screening/

About 1 in 133 people have celiac disease, yet only 20% are diagnosed. CD is definitely a genetic autoimmune disease. Scientists hope that by studying it, they can find cures for all autoimmune disorders.

I wish you well.

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Congratulations on getting better in under 6 months as that is how I did it after Cipro as well, but I had to do quite a lot as I had an extreme case that was completely debilitating. I hope in future I can get back to you and ask you to support what I might plan to do, so other are helped, but I am just so bitter after 15 years of helping people that I think it is too much trouble. I don’t want to bother explaining all the issues.

I just finished trying to help one woman on the BeyondType1 site that i joined on July 9th and by the 13th they decided to remove my one comment because they said it was too medical and I had no right. So the fact that my doctor asked me to help about half the people I have helped was fine with him, but the site would obviously rather people just remain sick.

About half of the people I helped were non diabetics who got the neuropathy from fluoroquinolone antibiotics.

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Janina,

I am sorry that you expericed such devastating symptoms after being exposed to fluoroquinolones. There are several fluoroquinolone websites and groups that were helpful to me. At least the FDA has requested a black box warning on this drug after receiving so many adverse reports.

My chart indicates that I am “allergic” to this drug. As a runner, I would be horrified to experience spontaneous snapping tendons which is on serious side effect.

This antibiotic may be good for some, but not all. The problem is, you do not know until the damage is done.

I will be sure to insist on the full panel. Thanks again.

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Put this into the search box on this site
Neuropathy @JaninaWalker

The @ sign brings up comments made by myself with the “neuropathy” word in them
and see what I wrote on this site in 2011
I cured myself in 2002-3 and the ensuing years were free of neuropathy, but not the effort of helping several people.

If I put the 5 pages I created here for you I predict you will say, “why are you writing a book?” So I decided not to do so. The one comment I put on another site the BeyondType1 on July 9th was entirely deleted because someone else who has had diabetes 5 years thinks he knows more than my 36 years of type 1 and all the research I have done. So I left the site, as the site admin said I should not be making medical comments. I guess it was because I mentioned the c-peptide test, but they would not be specific.

And this site will soon be run by that site, so I am not going to bother anymore. I think 15 years is enough of busting my gut for people with neuropathy even though my doctor asked me to help about half of those and they did get better. Some came from having read my 2011 comments on this site and others from other links. The easiest people to help were those who were told to follow my directions by my GP as he knew I had cured my own case in 2002-3.

And my recommendation to you is as simple as using a professional grade multi vitamin mineral that has a normal adult dose of 8 tablets a day for even healthy people and spilt that into 4 divided doses and take 2 tablets with each small amount of food you normally eat……Very simple. It is the same brand but the higher value one of the same brand my doctor has all his patients use. I met him in 2000. Even he has adjusted his use of getting methylcobalamin in vials instead of the cyanocobalamin version of B12 for all three of his clinics that he runs with a staff of many under him. He is rated the best GP in Toronto on rateMDs.xxx as of Oct 2015 when I last looked. Guess what xxx means as I am not allowed to use you know what. He did that switch of B12 probably around 2005. I had asked him to get the methyl type of B12 for me around the fall of 2002 and he gave it to me on Dec 14, 2002 along with 2 other vials of B complex and one of B6 and two weeks later I was 50% better. I’m not even suggesting you go to the trouble of the injections of B vitamins.

It is against the policy of this site to list a link that ends in dot com so I am not allowed to say more. No wonder this site has gone downhill. They now have to give it to another site to run and it will get even worse. The professional brand is Douglas Laboratories Ultra Preventive X and can be found on amazon. Try it for 1 to 3 months at the full adult dose but divided into 4 separate times and I predict you could even be cured. You said you tested as low on B12.

One woman was cured with another even lower quality MultiVitMin ranked 3.5/5 stars in 2014, based on what I suggested to her as it was on sale. She even has got together with a diet clinic in the past year and lost over 40 lbs as of a few months ago and still is in their care, but no longer takes any insulin or medications. She told me that in the last three months as she saw I was active on facebook which I rarely log into. It is good to hear such good news.

When she had neuropathy she had been using 120u per day of insulin over 4 shots of 30u each in Feb 2014. And when I communicated with her on May 30th 2014 she said her need for insulin had dropped to 83u per day just because of the supplement and she had no longer any neuropathy. What gave her the neuropathy was the use of metformin at three doses of 500mg each a day which drives down B12. She had at that time been using a single tablet multi vitamin mineral which is close to useless and ranked 0.5/5 (see Lyle MacWilliam’s rating book). So being all cured three months later on May 30th 2014 when I checked was worth it to her and all I had suggested was a better quality Multi and Vitamin C. The reason she now needs no medications in 2017 is the diet doctor team has just taught her the value of a low carb diet and they give injections of B vitamins, but charge for every visit. She had been on insulin for over 10 years as I first met her in 2006 in person before she had started insulin and had already gained weight from the diabetes drugs she had taken for a fair while before that point in 2006. So if she had been on the low carb band wagon from the outset she might never have been deemed a diabetic and she would not have gained so much weight. Many people find this out.

You should try it…nothing ventured nothing gained and it is for anyone healthy or not. Read the user reviews on amazon
Douglas Laboratories - Ultra Preventive X - Multivitamin and Mineral Supplement with a Special Organic Fruit and Vegetable Blend - 240 Tablets
by Douglas Laboratories
$ 75 64 ($0.32/Count)
It is in a plain container as it is sold by doctors to patients. I use it.

The 130 ratings come to 4.5/5 stars and the professional ratings book gives it a 5/5 star rating and the 240 tablets is for one month of 30 days, so 8 per day if you are a man for sure. A woman might start out at that dose for two weeks and use less after that if she wants to save money. You are short on B12. This is a gold standard product. Amazon calls it a choice product.

Go to their web site and get the PDF that lists the contents. There is a lot in it, but professionally balanced with the right amount of everything and the correct formats and does not use magnesium stearate as a lubricant for the machinery. It uses the best methylcobalamin….etc.

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Metformin itself can bring on neuropathy. especially if on a high dose as it drives down B12.

One single vitamin will not cure neuropathy

The woman I had helped in 2014 is now free of all drugs as she lost weight. But she had been on insulin over 10 years since I saw her in 2006 before she started insulin. And she had gotten to 120u per day, with 4 doses of 30u each. But when she added the supplement her need for insulin dropped to 83u per day and that is because it improves the way the body functions as chromium is an essential cofactor to allow insulin that you do make to attach at receptor sites and there was chromium as one component in the supplement but many others that also improve how the body works. You could also therefore find you would not even be prediabetic with taking the better quality supplement…just like the woman above found her need for insulin dropped immediately.

Be encouraged that when the doctor said your case was boring what she meant is your case is more likely to be resolved as it has not yet developed to the extent of others as it is newly developed. Please be glad you are off the gabapentin as that would not help at all.

The Cymbalta could cause a problem if suddenly stopped so be aware of that as it can bring on suicidal ideation. I know because I have been on Prozac in the 1990s and learned it is not wise as when the neurons adapt to the excess of serotonin in the synapse they pull back and and fewer in number so to stop the drug then really brings on severe depression. There was even one court case about a fellow who turned into a mass murderer all because his SSRI drug had run out and as he was bitter and going to kill himself he decided to go to work and shoot all those he could find that he had a grudge against…so think of all those people who do things like that and realize you don;'t want to feel that bad so just be warned that to even delay in refilling that prescription, if it runs out, will cause a serious issue…so when you know, like I did when my prescription ran out, I knew it was a result of the drug running out and not that there was reason to feel so extra miserable. it is well known the SSRI drugs need to be gradually withdrawn from and not stopped suddenly. The SRNI class is the same that Cymbalta falls in and while doctors may briefly tell you that it takes a gradual withdrawal if it needs to be stopped and they do not explain the reason like this you might think it is all a matter of mind over matter…NO this is not a personality thing. It is just the truth that for all drugs a person’s body adapts and then can cause worse issues… The reason this would not happen for taking say a single Tylenol for a headache on one day, is that is not long enough for the adaptation to set in, but anyone taking a drug for a longer period does find the body adapts and that is why all drug addictions are a problem. It is always why larger and larger doses seem to need to be taken.

I am glad you are an intelligent person because that means you could indeed see the logic of using the nutrition supplement approach as to cure the disease is far better than saying it just goes away…it goes away if appropriate steps are taken. what types of food are you eating? I ate very little as I was in such misery but I did have protein. I ended up losing 10 lbs over the Sept to Dec to Jan 2nd time and I wasn’t even overweight, nor had it been part of the plan.

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Thank you for your insight. I am continuing Cymbalta but certainly aware of the need to taper off slowly when that time comes. Right now, it is helping the neuropathy. I have begun to take more Alpha Lipoic acid, B12, along with many other vitamins beneficial to both diabetics and people with neuropathy. I’m hoping, over time, this pain will subside.

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Do you take your supplements just once a day, or twice a day? The more you spread it out the faster the results even with the same amount taken as the point is to always have some nutrients in the blood for the nerves to draw from given that certain vitamins like the B vitamins stay in the blood no more than 8 hours according to a study I read in 2002. I know it is more trouble to divide a normal dose into smaller more frequent doses, but you should want to get better as fast as possible. When water soluble vitamins wash out fast, it makes sense to split doses.

When my doctor complained to me in around 2004, saying, “how are you going to get anyone to do all that?” I said, “if you have children are you going to say to them it is only worth my time to feed you once a day and if you are hungry at any other time forget about it?” He had no answer to that as it was obvious. We feed ourselves usually about three times a day so why not think of the nerves as small children who need more frequent feedings. Water soluble vitamins wash out of the blood fast and the nerves get their food from the blood. When I was figuring out how to get myself better, I was using several books I had on supplements and also years of being type 1 diabetic so that is why I figured why not just inject the B vitamins as I already knew how to inject insulin.

For someone who wants to avoid the injections, a professional grade multi vitamin mineral spread out in the day so it is a normal daily dose but just split up so there are always nutrients in the blood is the best approach. The R-ALA is also good, but also spread that through the day. The more variety you add the better.

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John A Senneff who wrote the book Nutrients for Neuropathy had said he had neuropathy for 18 years at the point of writing…so don’t try and take the lackadaisical approach.

Why in your opinion did she say you had a boring case?
Is it limited to only certain areas?
Have you considered if it is only on one side that it might be because of how you are most prone to sit which might impede blood flow?
Is it only in the feel or where else?

Whatever you d do not sleep with you feet higher than your heart as one man I helped did that and he has as a result worsened his gangrene and back when he said his doctor told him to raise his feet because of swelling in the ankles I said OK for a while but not for over 10 hours at a time as the man sleeps most of the time. He saw the point, but it was too late and he said it was hard to break a habit. He also had straight lines under each knee as he had tried to squeeze the swelling out with tight socks and that sure did not help. His legs were about 6 times darker from the mid calf down and I had seen the socks had been cut off as well so he had already come to that conclusion but had not cottoned on to the fact that having his legs on a pile of pillows while asleep had been overdoing it and depriving the skin of adequate blood flow.

On this plan to take more ALA…I suggest not all at the same time, but before each meal by 30 minutes. Taking more of anything at the same time is a way to waste it. In general things that are over what the body can use at one time just go down the drain especially the water soluble elements. I don’t even bother to take mine before a meal as it is simpler to take it at the same time as all the others, but a recent search does say ALA is better taken before a meal.

But if you notice an improvement by having three doses instead of one that will help prove the point that you will get better faster by slitting doses even though it will take more effort.

Certainly B12 is better in divided doses as it is gone so fast. And the irony of them making the under the tongue varieties taste like a flavour is that people have them melt in the saliva and then can’t resist tasting it which means it gets swallowed and goes into the stomach. But that is what was to be avoided as some people don’t have enough intrinsic factor to get the large B12 molecule to get into the blood stream from the stomach, Going into the system through under the tongue is supposed to help this but it takes a conscious effort not to forget this point. I just tried tasting one of mine and it doesn’t have a flavour, so that’s good.

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James, my story is almost identical to yours. Severe neuropathy over my entire body started suddenly a year ago. First symptom was red burning feet. Went to about 5 different doctors (including a holistic doctor) and could not get a diagnosis. I ended up going to Cleveland Clinic and received a diagnosis of not only small fiber neuropathy, but autonomic neuropathy as well caused by diabetes. My primary care physician always said A1c is “king” and since mine was always under <6.5 he wasn’t concerned. Now, I know differently. I have an appointment to see an endocrinologist. My question is, now that it’s been over 2 years for you, how is your neuropathy and what have you found that has helped.

Wow! I’m sorry I took so long to reply. What has changed since last year? I’m still having neuropathy, mostly in my legs and feet. I occasionally feel it in other parts of my body. Now that the weather is turning cold again, my pain is ramping back up.

I tried every thing that Big Pharma had to offer. In most case, the side effects were high and the benefit was low. I finally decided that I would try medical cannabis. My state (Ohio) recently legalized it for medical use. I easily obtained a medical card, based on my documented condition, and have started using it, as needed for the neuropathy.

Not only does it work, it works incredibly well. The CBD portion, the non-psychoactive, part of cannabis is what provides the true benefit. It won’t get you “high” yet numbs the pain and lasts for a few hours at a time. I would consider giving it a shot.

Hi James, I am crossing my fingers that you are still receiving messages via this forum.

When I read your description, it was like reading about myself. I am a 45 year old male who, one day and out of the blue started experiencing debilitating neuropathy in my legs, now in my face. I went through the same journey you did (million dollar medical tests, including EMG, MRI, labs, even genetic testing). The ONLY thing that was not normal, just like you, is that my fasting glucose level was consistently in the 110 range. They have put me on metformin but I have not started yet, hoping diet and exercise can bring that down. I have two kids, and trying hard to battle feeling down when I have to many sensations in my face and legs. Also just like you I have been diagnosed (via biopsy) with small fiber neuropathy in my legs.

Now in 2021, what’s your update? How do you take CBD? is it pills, or gummies or a cream you apply? I have heard similar stories about it working well and want to give this a try.

Thank you for typing this up all those years ago, it gave me some hope.

I know this thread is a bit old, but I was told back in 2015 by a specialist in neuropathy that neuropathy in diabetics always begins in the toes.