Help to a friend with type 1 diabetes who is with mild neuropathy

#1

I have a friend from Brazil called Taicy who has type 1 Diabetes for 30 years and she is going through a hard time of uncertainties trying to treat a mild neuropathy.

Here is what she says: "I feel a little tingling in the feet and a slight numbness in the fingers. In the hands when I sleep I feel them too, sometimes, a little sleepy. Just like when you sleep over some part of the body or when we are long in one position.
I feel no pain and was diagnosed as mild neuropathy. I was told that the IDF said in Dubai that blood sugar control and keeping it at appropriate levels may even reverse.
I wonder if anyone has had and has reversed and how. What did you do?
I'm taking Thioctacid HR 600, which is also called alpha-lipoic acid. Do you know about any other kinds of treatments?"

Anyone who knows about neuropathy or have it could be very helpful.

Thank You very much,
Fabiana

#2

I have PN. It was severe enough a year ago that I could barely dress myself. I could not tie my shoes. I had to use both hands to carry a coffee cup across the room. In the cold I cold hardly move my fingers.My feet and legs were very numb and the cold made it difficult to walk. I began taking r-ala, 1200 mg, 600 morning and evening. I have been able to keep my BG pretty level and have an average A1c of 5.5 for the year. After 12 months of good control and r-ala I have a lot more flexibility. In just the last few weeks I have noticed that I am beginning to get some feeling back in all areas. I read in a Johns Hopkins report (found a link on a blog here somewhere) that it can take 2 years or more for the nerves to repair. I wish I still had this link. It was a very encouraging article. It is reversible with close to normal BG and the r-ala definately helps. I have not done anything else or taken any other meds. If it improves this much over the next 12 months I will be the happiest man on earth.

#3

Hi Randy!!
Thank u so much for the information, here are some questions my friend wants to make for you, I am translating it because she does not speak english:

"- Could Randy report what were the first symptoms if he had?
I have tingling in the legs and feet too close to (shin area). Sometimes the tingling passes. I have occasional numbness in the hands at bedtime. I have no pain.
- I wonder what treatment for diabetes he is using this to get such good control, because I'm not getting a good one with Lantus and Humalog. I have a lot of hypo dawn / morning and high glucose (at least 1x per day). If Randy uses multiple injections (which) or pump? What else?
- What are the blood glucose levels that ADA recommends?
- What is the other name of this medicine he takes and what is the laboratory. I started taking THIOCTACID HR 600 from Merck (1x a day). English is Thioctic Acid or Alpha-Lipoic Acid. Is it the same one? I really liked the results I had with it. I started to have more with it and confirmed hypoglycemia in the instructions hypoglycemia might be a side effect.
Well, that is it. Tell them that I appreciate their report. It was very helpful to me. And I cheer for Randy to be the happiest man on Earth as soon as possible." by Taicy

Thank You! and good luck with the treatment, I hope you will get even better results soon. Sounds that what you went through was tough and I appreciate you sharing and helping others.

All the best,
Fabiana

#4

Hi dear Super_sally!!

Thank you for your report, my friend says thank you as well!!

She would like to know if is this a book "Diabetes Solutions"? was it helpful for you? her diet is about 100g carbs per/day, do you know how much would be ideal in Dr.Bernstein's recommendation?

Thank You!!
Very Best
Fabiana

#5

Very glad to help. I have only a few minutes before I have to go and may not be back on until tomorrow.I take 36 units of Lantus in the morning and about 5-6 units of Humolog per day as needed. I eat about 100 carbs per day. And yes, I think your med is the same thing as my r-ala.

Take care!

#6

Fabiana, I beleive this is the link Randy was talking about that explains what is going on with neuropathy. The good news is that it is very slow to heal but if you keep good control you can expect it to get better gradually.

I take R-ALA and Benfotiamine (a fat soluble B vitamin) and believe they help. You can search the forum for these terms and get others opinion on their use.

#7

Dr. Bernstein suggests 30 gm per day. There are people on TuDiabetes who are following his guidelines fairly closely.

He's the T1 doctor who speaks of "the magic of small numbers". By this he means that most of the problems diabetics encounter are from trying to eat way too many carbs and then, as a result, having to inject larger quantities of insulin to cover them, resulting in more risk of big highs and big lows.

By eating fewer carbs, one need only inject small quantities of insulin, resulting in fewer wide swings and much better control.

He also believes that all diabetics deserve normal blood glucose values and can achieve them if they adopt the "small numbers" guidelines.

#8

I also had tingling in my arms, hands, legs, and feet when I was first diagnosed a few months ago. More noticeable the first few nights of lowering my BG. My blood sugars had been quite high for at least three months. As I got them more under control I noticed lessening of those symptoms. I had numbness on the top of my left foot that is now gone. (thank god!!!) It was frightening, but the improvement was daily and resolved within a month of having more normal BG. How was your friend BG control? I still have the occasional high from underestimating carbs from restaurant meals. (sushi!?!!)or high adrenalin response but get them back down with Humalog. If she is waking up with lows maybe she needs to decrease her Lantus or change the time of day she takes it? I’m still so new to this whole thing myself. Please keep us updated on her progress. I also find that eating less carbs makes me feel better and have better control I do a low carb diet during the day and have some with dinner. Although my diabetes nutritionist disagrees. She says Bernstein is a whack and I need more carbs to fuel my body.

#9

Wow. I am always disappointed to hear of a diabetes "expert" trashing Dr. Bernstein. As far as I can tell, he's one of a handful of people working in the field who are actually helping diabetics avoid complication and heal complications after they've been developed.

I will never understand this antipathy towards a long-term T1 who has dedicated his life to helping other diabetics.

Dispute the science? Sure. But call him names? Why?

#10

Let your friend know it can be reversed. Years ago, it must have been in my 38th year, by that time my feet were number and my fingers were affected. I was referred to a CDE who taught me how to have tigher control on my Diabetes and it helped. I followed all that I had learned from him and other cyber information and eventually I regained feeling in my feet. I was able to keep my a1cs under 7% and have done it now for almost 15 years.

#11

I have had it for years. I hope you see a Neurologist. I worked in a Neurologist's office for 9 years volunteer no pay. Has your friend had nerve conduction tests, Nine got so severe I could step on a nail and not know it. Mine started the same way. I take NEURONTIN...up to 900 mgs a day. Check the GROUPS there is one on Neuropathy. Good luck to her. Reed

#12

I switched Doctor's this week. I love my new M.D. and she supports what I am doing with low carb, but also wants me know that I can eat the right carbs when I want by injecting the appropriate amount of insulin to accommodate for them. I read Bernstein's book and I believe his theory can help people, but he's not for everyone.

#13

My doctor says the same thing about needing more carbs. I can tell you from my experience that they are both wrong.

#14

Thank you so much Randy, I shared the info with her :)
Take good care, Fabiana

#15

Hey badmoont2, thank you! I shared the info with Taicy and she was very grateful! All the best for you, Fabiana