Freaking out a bit about Neuropathy...I'm 25 years old

Type 1 and LADA
21

I would say you are fortunate to have a Dr who is T1. I would be inclined to trust him more often than not. That being said, it is still up to you (each of us) to understand and manage our D for ourselves. He may be entirely right about where you are right now. At the same time, from what I have found both in studying and talking to other PWD it does not always take years and years for complications to begin. And as Alan has said, this does happen with A1c's below 7.

There is no harm in learning more and being proactive.

22

That's great! I have low a1c but I still have fluctuations and I worry about that too.. I'm trying to keep my sd lower even if I go to a little higher bg range. I still feel like something is going on with my eyes, but nothing shows up on exams. I will be going to someone who specializes in D eye problems soon.

23

I think it's good that he said that, but of course you can always go for a second opinion too if you're still worried. I would probably do that.

24

remembered this post and made a note - hope all is well in retrospect. lots of love

25

Hey buddy,

I suffer from a severe from of peripheral neuropathy and as far as living a normal life goes, everythign is fine. I was only diagnosed last year in october at the age of 18. My pains came on a few months after the initial diagnosis. At first it was agony, however through tight control of my blood sugars along with a cocktail of medications the pain has been brought under control and I am able to lead a relatively normal life

Just for reference the medications I take to control the pain are

Pregabalin
Amitriptalin
10mcg/h Norspam (buprenrhine) patch

Hope everything goes well for you :)

26

My experience says no real person can do it without a CGM and a pump. I've got both, and while I don't achieve <100 100% of the time, I"m there 90%, and very very rarely go over 140 after eating.

The trick is bolus timing and regular, frequent, small doses for correction and adjustment. Also, a basal program matching varying needs during the 24 hour day, especially countering Dawn Phenomena, which usually starts while you are asleep in the early morning, so a pump is the only solution that can effectively counter it.

27

SD? Standard Deviation?

28

Can you elaborate on your strategy?

I am focused on post-prandial numbers as well, but the only technique I have/know is bolus timing (pre-bolusing based on anticipated carbs).

I'd love to learn any other techniques or tips that others use.

29

I disagree that the pump is the only way. My normal is between 70 and about 110. That goes for my fasting numbers as well. I am on MDI and have been for almost 3 years. It took a lot of experimentation and still takes a fair amount of attention, but my A1c has been a rock steady 5.5 that entire time (started at 12.3 in Oct. 2010).

I eat about 100 carbs (low glycemic) per day and several times I have gone more than a week without using any Humolog at all. I do this by taking my BG, recent and pending activity levels into account before I make my meal choices. Since I am using so little insulin I rarely get below 60 if that. If I want to have a higher carb meal I do, but I find this affects my BG for over 24 hours. Not that it is too high, but I have to use more insulin to control it for a day or so.

It takes some work and close attention, but really, it is a pretty simple program. We are all different and must find our own way. I just started this whole thing in a deep, deep hole. I already had PN and autonomic neuropathy as well as retinopathy. I had lost 45 lb as well. So you see, I did not have the luxury of putting things off (which I am sure I would have done with an earlier DX). The ONLY hope I was given by ANY doctor was to normalize my BG. Which I am doing and which has indeed vastly improved ALL of my complications.

So the answer is, find what works for you and stick to it.

30

I am glad to see somebody is improving from diabetic neuropathy. I have been reading a lot of your post or replies and have a few questions for you after i explain some things about me. I am a 43 diabetic type 2 with diabetic neuropathy 5-10 and I weigh 125#.

I have the classic symptoms in the feet, hands, face tingling, pressure behind the eyes, nose or sinuses running from constricted blood vessels, wrist and below the knees being numb with hair loss, waking to a dry mouth at 3am (I think its from diabetic neuropathy), even after my sugars being less than 100 for 3 months. The past several weeks It has progressed up to my upper thighs and the groin area(burning and muscle weakness). My upper arms, upper & mid back, armpits and now my throat with sugar levels being excellent and eating vegie soup with chicken, flaxseed, walnuts, pecans, fish, okra, green beans (whey protein so that I can max out my protein calories) and etc but I am getting extremely worse.

I was diagnosed 6 years ago with careless doctors who did not inform me what my numbers should be or anything, only self education from online stories. I have had an a1c of 5.0 for 1-1/2 years with rarely getting over 140. I have recently over 3 months maintaining sugar levels less than 100 throughout the day and fasting being average of 90. every now and then say every 30 days, it totaly disappears for 12-24 hours for the past 1-1/2 years.

For the past 3 months I have read that i need to keep my blood sugars between 80-100. I have been doing that with rarely getting over 100 (maybe 105-107 once every other week)and rarely down to 60. The past 2 weeks I have started substituting the cheap alpha lipoic acid for the r-alpha lipoic acid with some relief. I am having to eat plenty of good foods so that I can not loose anymore weight. 6 months ago, I weighed 130 and went on a very strict diet and lost 2# in a weeks time but my neuropathy felt 95% better but I can not loose any more weight. I love to exercise but then I have to eat more calories so I do not loose any more weight and it greatly affects the neuropathy. I quit drinking 3 years ago and i qiut smoking 10 months ago with no improvement. I do take benfotiamine, methyl b12, multi vitamin, coq10, l-arginine, magnesium malate and recently started r-lipoic acid and evening primrose oil

My question is, What did you eat to turn things around for you and what do you currently eat.
Did your neuropathy get worse for several months after you had not exceeding 100 before it got better.
I am a type 2 with metformin 1000mg am-pm and glyburide 2.5 am-pm
Please help me, Thank you Channing drew

31

When you say that you lost 45 lbs, was that while taking r-alpha lipoic acid or before you got your blood sugar numbers under control. Please let me know, thank you