So my question that so far no doctor has been able to answer is: I know that my peripheral neuropathy (in my feet and partially in my legs) is bad when my blood sugars are high, but since being put on the pump in October 2011, my sugars are 100% better. We are talking in the 70 to 110 range. So the question is why do I still have severe symptoms at the 70 to 110 range sometimes worse than when my blood sugar does spike over 110? At times it seems like its worse when its in the normal range.
I can't give you medical reasons, but I can tell you that it has been similar for me. I have PN in my feet and hands. Actually from my calves and fore arms down. It was bad when I was Dx'd and got worse as I gained control using insulin. At times (less so now than in the beginning) any big swing in my BG caused more pain. I began using insulin in November of 2010. My A1c in October was 12.3. I also began taking 1200 units of r-ala in December. My A1c in Feb of this year was 5.6, July was 5.4 and Nov again was 5.5. It took until late Oct of t2011 for the pain to be pretty much gone. In just the last few weeks I have noticed increased feeling in my feet and hands. They are still numb, but much less than before. I have also noticed during this entire process, that I would feel better then it would seem to get worse for a short time before it improved again. Kind of like two steps forward and one step back. I found the same to be true for my retinopathy. According to what I have read, it can take two years or more of "normal" BG to repair the damage and the older and taller you are increases that time.In the beginning I wondered if anything I was doing was making a difference. After about five months I could tell it was improving, but it took almost a year to feel confident that I could actually recover at some point. From my experience you sound pretty normal. Just hang in there.
Here's a link 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. Like Randy mine got worse when I gained control of my blood sugar???
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.
The reason symptoms are worse when you go back to excellent control is a good one: the nerves are healing! It's like when you sit or lie on a foot or hand and it "goes to sleep", but when you regain circulation there and it "wakes up" you feel pins and needles for a while, right? The nerves as they regenerate will give you random sensations and symptoms (tingling, maybe sharp jabs.) I think this is in Dr. Bernstein's book.
Even though I didn't really have any neuropathy symptoms BEFORE that I noticed, AFTER I started to take firmer control of my diet and BG values (again) in the last two months, I also noticed some jabs and tingles. This shows me that although I hadn't noticed any neuropathy before, I must be regenerating nerves now that my sugars are way down again.
I started taking alpha-lipoic acid, too, but I'm not sure if the ALA I'm taking is the same as the R-ALA that is recommended for neuropathy? My vitamin expert at PCC didn't know either and the jar just says alpha-lipoic acid with no R in front. It just says that it's "a powerful antioxidant" so I thought that couldn't be bad.
Does anyone know if this is the precisely correct supplement?
Don't despair and keep at good control; it might take two to three years to fully heal:
"As the nerves heal you may experience some pain, tingling, or itching in your extremities as the nerves start working again. This is normal and happens when any damaged nerve starts to heal, especially ones that previously were numb. The pain is a short term effect and should be replaced in a few months by normal function."
R-ALA is supposed to work much better. The reason is that regular ALA and R-ALA are antagonistic, and the regular version contains both types of ALA. You can usually tell if it's the R version by price, R is much more expensive. It's also recommended that you supplement with Biotin because ALA can cause a deficiency on Biotin. The brand I take is Insulow which includes the biotin.
Thanks! I'm researching this right now. I think it's fascinating that so many people recommend R-ALA but it's so hard to find in Seattle. I couldn't find it a PCC (Puget Consumer's Coop) or WholeFoods or TraderJoe's -- all the places I usually buy my natural/organic supplements. Hrm?
Getting a brand name helps. I just found it on Amazon.
The Insulow capsules I'm finding on-line only contain 100 mg per capsule. I thought that 1200 mg per day was the correct dose? Are you taking twelve capsules every day?
No I only take 4. The dose from Dr. B is 600, or 6, I believe. I'm basically cheapening out cause it's pretty pricey. I get mine from Amazon, seems when I started they had about the best price. It also helps lower blood sugar in some people, but I don't think it has that effect on me. I know you are on insulin so I would be careful starting out in case it lowers your sugar.
Hi Jean, My understanding is the r-ala is a more natural form and far more effective. Also that they do not work well in combination. When I researched this I found recommended dosages from 600 to 1200. I take 1200, 600 2x per day. I found a 200mg cap and buy them from Vitacost. I've never been able to connect BG to the r-ala, but it could be helping me keep my A1c in the 5's. Other than luck and LC I can't explain my success with anything else.
Seattle Super supplements has a good selection, but only 100 mg and still cheaper online.
Thank you for the help. I've taken ALA before but probably not a high enough dose. Currently I am on 3600 mg of gabapentin a day. Started at 1200 mg a day in 2008 when I was diagnosed. I know it didn't help much that I went without insurance and dr care from 2005 to 2009. When I married my second husband I got really awesome insurance and can see an endocrinologist I want to see. My last one was completely unsupportive so I switched at the beginning of my pregnancy in 2011. (I'm actually hunting and pecking at the keyboard while holding my baby son. I was also able to get on an insulin pump 2 months after the birth of my son. Luckily also due to the pregnancy, my deductible was met and the pump was fully paid for and 3 months of supplies.
