i've been reading this forum for the past month or so, ever since i noticed tingling in my feet and numbness on a very small patch of my left big toe. since then my symptoms have only gotten worse (more painful, moving through the hands and feet and legs, more intense). i was wondering if anyone might have some insight into what's going on.

I'm a type 1 diabetic and have been since age 3. I'm 18 now and though my diabetes has not been well controlled for the past 3 years, my endocrinologist does not think my diabetes has anything to do with the onset of my symptoms-- she says many kids my age have way worse control and no neuropathy.

I am skeptical considering my symptoms worsened very suddenly when I began to take much better care of my blood sugars. I purchased Dr. Bernstein's "Diabetes Solution" and have begun eating low carb. I also acquired a Continuous Glucose Monitor and my a1c has dropped from 8.0 to 7.5 in a month, and will continue to drop given my heightened control. In that month, the tingling, aching, stabbing, burning, pressure, and stiffness in my hands and legs (from knees to toes) has only intensified.

Thinking back, my symptoms really began sometime in January, when I began experiencing slight heel burning after exercise and an occasional jabbing pain in my heel. But these two things were both so slight that I hardly noticed them. Back then, my blood sugars were very out of control and I was both smoking and drinking heavily. Since I discontinued smoking and drinking for the most part and began to take care of my blood sugars, my symptoms have gotten dramatically worse. Except for the toe numbness-- i have regained most feeling there.

Other health concerns are: depression, a pilonidal cyst (which has also been acting up more and more in the past months along with my neuropathy), gluten intolerance, strange stomach/digestive issues, and chronic low-grade back pain

I'm taking a lot of vitamins: thiamine, alpha lipolic acid, omegas with vitamin D, betaine hcl, and a multivitamin specially formulated for diabetics. I also eat gluten free and am very health conscious when it comes to diet. I avoid carbs and processed foods almost entirely.

I visited a neurologist twice. she did a physical examination and an emg: both were completely normal. my bloodwork was normal as well, except for slightly elevated levels of arsenic. I had eaten fish the night before, however, and that can apparently skew the test.

I am on the omnipod and take humalog insulin.

My symptoms are worse in heat. Acupuncture relieves the pain and lowers sensation for a few days. I take regular epsom salt baths and rub magnesium oil on my skin every night.

My aunt has peripheral neuropathy and her symptoms presented after she had graduated college, when she was 22. I don't know much about her PN but it is idiopathic and it doesn't seem to bother her all that much. My mother has had bouts of neuropathy and is currently experiencing random stabbing in her heel, but it is way less frequent and annoying than mine.

i feel very worried about these symptoms, especially considering that everyone else on this forum seems a lot older than me... i wonder how much worse it can get, and whether the time i've had without significant pain is the last i'll ever have. i am a violinist and am about to head back to school... i don't want to miss out on college because of pain.

best,
helen

--obviously, one would think the diabetes would be the first place to look, and I am sorry that you are experiencing this so young, but diabetic neruopathy, especially painful small-fiber types, can present at any time along the progression to diabetes--even with impaired glucose tolerance (pre-diabetes, among people who may go on to develop Type II, so one doesn't even need a frank diabetes diagnosis to experience it).

But what you also report are a cluster of autoimmune situations--along with the Type I--any of which could have neuropathy as a component. Certainly gluten problems/celiac are linked with neuropathy, as are a number of other autoimmune conditions besides Type I. (And autoimmune conditions often come in clusters.)

Have you been to major academic/teaching hospitals during this process? How extensive a work-up into neuropathy possibilities have you had? (There is a tendency among clinicians to assume if you have neuropathy and diabetes that the diabetes is DEFINITELY the cause.)

I went to UCONN first thing with a referral from my endocrinologist. This endo, by the way, insists that this can't be diabetes related, mainly because she's seen teenagers with far worse diabetes control that have no signs of nerve damage.

I had an EMG and pretty extensive bloodwork-- they checked for lyme, heavy metals, RA, vitamin levels, etc.

The weird thing is that this has really gotten noticeable with a marked improvement in diabetes control. The tingling continues to progress up my legs over weeks even though I have vastly improved my blood sugars.

I was reading something in Dr. Bernstein's "Diabetes Solutions" (a great read for all people with diabetes, type 1 and 2) and he mentions how most patients he sees experience painful and uncomfortable nerve budding after they improve blood sugar, but only when neuropathy has left their limbs completely numb. So I was speculating that I might be experiencing that sort of symptom.

But so far nobody has given me any kind of answer... the neurologist pronounced me perfectly healthy. Frustrating but I suppose a lot of people on this forum know that feeling.

I hate hearing things like that. The assumption there is that everybody's body is exactly the same, and it's completely inconceivable that some people may be predisposed to neuropathy for some unknown reason?

In some Type 2 diabetics, neuropathy surfaces before they even officially meet the criteria for a diabetes diagnosis. There's no predisposition there?

Ugh.

Hello, Helen.

I wish I had something to add to aid you other than great job on adjusting what you can. I am a type 2 diabetic who has seen symptoms continue to sputter despite great numbers. I guess time will tell if that bears out as a good thing for me.

I have had more than my fair share of frustrating doctor appointments of late. Please don't let that discourage you from continuing on the positive changes you are making, especially on the drinking and smoking front. Damn, who put my Dad hat over here?

Wishing you continued success on taming the A1C and I hope you find some resolution to your increasing neuropathy symptoms.

Jon

I find it odd that your endo, denies that PN due to sfn damage, and Autonomic neuropathy is not caused by diabetes, since its been well known that diabetes can cause neuropathy, but the mechanisms are poorly understood though.
With diabetes type 1 its due to lack insulin production. Neuropathy from diabetes takes years or decades to become apparent, that Dr's claims seems a little fishy. Most of the pain and numbness can be attributed to neuropathy though.
Most scientist and doctors agree that Diabetes can lead to neuropathy, they even have some special footwear. does your doc only believe NEUROPATHY only exist in older people or something. Neuropathy from diabetes tend to linger and can become permanent

--of upticks in symptoms with diabetic neuropathy during attempts to get blood sugar under control, and even with improved numbers. It is thought that this may involve the nerves having to metabolically re-adjust to "the new normal" of more stable blood sugars after they had upregulated their signalling to cope with neurologic compromise.

There is also the possibility of repairing nerves producing all sorts of wacky sensory symptoms. Nerve regenerate very slowly, and often the fibers have to fight their way around or through other tissue, and often take pathways different from the original ones, so there may be periods during which the brain interprets the incomplete or re-adjusting signals in unusual ways. This happens in non-diabetic neuropathies as well--it is most well documented in those who are recovering from nerve crush injuries from trauma.

Take a look at:

http://neuromuscular.wustl.edu/nother/diabetes.htm

http://neuromuscular.wustl.edu/nother/diabetes.htm#rxpn

Hi Helen,

Nice to meet you. PN has no age requirement and can affect someone at any age. So sorry you are having symptoms.

Glenntaj is so correct. If you are diabetic, the immediate jump is to "diabetic neuropathy" when that may not be the case at all. Diabetics, both Type 1 and Type 2, may or may not suffer from PN and it is not always dependent upon the amount of control. Generally speaking, the better the control, the better chance of fewer complications, including PN.

But, some diabetics with great control have PN and some with poor control do not. Every person is different.

Whether YOUR PN is diabetes related or not, I certainly can't say and you may find that many doctors won't be able to say, either. Tracking down the "cause" can be a long and arduous task and I fear that you will be dis-missed from obtaining a cause because you are a diabetic. Many practitioners will just chalk it up to your diabetes and send you on your way.

Regardless of the cause of your PN symptoms, the fact that you have made great strides in controlling your blood sugar levels can only be beneficial to you in so many ways, not just if your PN is related to your diabetes. You are to be commended for taking control.

Wishing you the best in your quest to find the true root cause of your PN. It may be your diabetes but it may also be from other sources.

This is so true. I had PN for about 3 decades BEFORE I became a type 2 diabetic.

Since being labeled a diabetic, everyone considers my PN as being "diabetic neuropathy". I just want to slap them. Then I have to provide my 30 year history of PN and my perfectly normal blood sugar levels for 30 years before they will believe that ALL neuropathy in a diabetic is not necessarily related to diabetes. It is an ongoing battle with doctors that do not have my history in their face.

PS Diabetes has not helped the matter but was and is not the cause of all my PN symptoms.

I've been reading these forums for weeks now and it feels so good to finally post something and see responses from people! I have so much respect for everyone who suffers from this condition-- none of my friends are truly grasp the intensity of PN and the anxieties its onset has caused me. Having some voices to talk back is really helpful, so thank you to everyone who has replied! I hope you are all able to enjoy your day today.

Diabetics-- I mentioned Dr. Bernstein before, and his approach (which seems to have worked for him and for many of his patients) is to do such intensive insulin therapy and diet restriction so as to lower a1c to nondiabetic levels. He uses insulin therapy for type 2s as well as type 1s and he wants his patients' average blood sugar to be 83(!). I'm not trying to do that at this hectic stage of my life but it's worth thinking about-- he claims that diabetic complications show up in people with "good control" because our definition of good control is well out of non-diabetic ranges. He suffered from diabetic neuropathy (in all its glorious forms) for twenty years before getting his a1c <5, at which point they cleared up after a few years. His story always gives me hope.

I'm not trying to do what he does, but for those of you who are willing and able to give his approach a try, I thought I'd offer that tidbit of info. I do eat low carb now.

glenntaj, thank you for those links! I have also read those reports and though they are few and far between, they do give me hope. (They also remind me of the chapter in the second Harry Potter book where Harry has to regrow all the bones in his arm with something called "Skele-gro." He wakes up in the middle of the night, in the hospital wing, describing some pretty bad peripheral neuropathy!) My mother tells me (frequently) that since there are no definitive answers for me right now I might as well believe the best option-- that I am in fact healing. I even have evidence to back that one up, as the numb patch on my left big toe has almost returned to normal!

And I understand everyone's frustration with doctors! For years and years I was medicated for depression not knowing the horrible effect blood sugar has on my mental health. I know that they are all doing their best for the most part, but the first person to really suggest that depression was, if not caused, at least worsened by my a1c of 9 was my therapist, a social worker, with no formal medical background outside of therapeutic skills!

And then there's the endo, who claims that because she sees teens with a1cs of 10 who never get neuropathy, my neuropathy must not be diabetes related. It's basically just a way of shunting me aside in her last few months before retirement.

Thank you everyone for the encouragement. I really needed it after last night! I go back to school on Thursday and I really want to stay on track with everything!