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Idiopathic sensory neuropathy that worsens with sugar: my plan

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Unread 04-24-2012, 11:00 PM   #1
dyctiostelium
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Default Idiopathic sensory neuropathy that worsens with sugar: my plan

Well, it took me a while to bite the bullet and accept that the burning problem is not in my imagination and is not going away on its own, so I better take charge of things.
I'm a 40 year old woman, mother of two, with a family history of early onset diabetes and diabetic neuropathy.
According to my labs at the time the neuropathy appeared out of nowhere I'm prediabetic, with a tendency for hyperreactive hypoglycemia after a glucose load.
Doctor's advice was: "watch what you eat, do more exercise, if the tingling keeps bothering you maybe we´ll try gabapentin, NEXT!".
So, after careful research I decided to devise a plan to follow for the next three months so I could get a sense of how the disease really is going to manifest under a more sensible set of conditions.
I'm posting it so that
1) people with a similar situation could find it helpful and
2) I feel commited to the board community and therefore do my very best to keep it
These are my resolutions:
-Eat reasonably 3 times a day, no complex carbohydrates unless I'm having proteins too.
-Avoid sucrose and fructose altogether, except in fruit.
-Avoid elevators (I work in a 8th floor).
-Take vitamin D, B12 and ALA.

Yeah, I know, it doesn't sound like much but, hey, it is quite a change from my former "eat-nothing-but-a-twinky-all-day" lifestyle habits. I know there are more supplements that could help but I'm trying to keep it as simple as possible and then add things if needed. I've been doing the first three plus vitamin D for a month and I think I do feel better.

I'll let you know how it goes. It is good to be here.

sUsY
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mrsD (04-25-2012)
Unread 04-24-2012, 11:58 PM   #2
dyctiostelium
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And, well, that would be the minimal and mandatory set of resolutions but I am also trying to:
-Sleep at least 5 hours a night (did everyone read about circadian rhythm disturbances directly triggering glucose intolerance/diabetes? I still can's post links but google will find it for you)
-Stick to yoga and meditate more.
-Call my mother more often.

Everything is connected...
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glenntaj (04-25-2012)
Unread 04-25-2012, 06:31 AM   #3
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--take a look at this little(?) screed about making dietary changes:

http://neurotalk.psychcentral.com/thread168680.html
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Unread 04-25-2012, 05:10 PM   #4
dyctiostelium
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gleentaj,
That thread is spot on what I dream of sometime be able to do about food, thanks a lot for linking it
Take care.
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Unread 04-25-2012, 06:15 PM   #5
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Benfotiamine is VERY good also. That and Alpha Lipoic Acid work well together. Good luck. I do not have any sugar issues at all, never have. But I can see how sugar spikes right after eating can still damage even if quickly lowered. Going up and down, high and low not good so I try to keep it all nice and level.

I massage my feet every night so I can really feel how they improve. It is really exciting. That is my PN, but I also have Autonomic Neuropathy, POTS. You cannot tell as easily. It is all over, organs, etc. I CAN see that my POTS is much better and I can stand and walk etc. The nerves are healing, working with the blood vessels and muscles to keep the blood from pooling and leaving the brain. The nerves are talking to each other much better now.

My doctor was SO happy to hear about my shopping trips, walking into church and improvement. He works so hard to get all of my supplements and hormones balanced. He is idea to stop sugar even though my tests were fine.
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Unread 04-26-2012, 03:16 AM   #6
Shezian
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Dyc- l am new here as well. Also a mother, with twin girls' who are 10 years old, and am 41.
My feet and hands started burning and tingling and going numb.
My symptoms have settled now. I take b1, b12 and L-carnie and am waiting for my Ala to arrive in the mail, as l live in Australia and you can,t get it here.

So in the am l will take these 4 supplements and hopefully l can reverse some of this nerve damage, that l may be responsible for with too many parties and drinking too much nice wine. Even though the neuro, thinks this isn,t the cause, and says one would need to drink a lot more for nerve damage to occur.

Whatever the reason is, l want to go back to normal or even stop the progression. I have cut right back on wine and am also trying to eat 3 meals per day. I tended to skip meals and have a huge dinner, but l need to change that. I am in the process of blood test, already had 2 ultra sounds on my tummy, which are all normal. Don,t really want to have a chest CT scan, too much radiation. I know they won,t find any cause to this NP. So l will be without answers. I am normal weight range and have always been healthy and energetic, and have exercised all my life.

Are you in the normal weight range? What did you eat during the day? Did you drink at all? Also, are you getting any blood tests or other tests to find out what could be causing your PN?

Sorry for all these questions, but ou are my age and a mother so l can reall relate, and not feel alone with all this.

Sue
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Unread 04-26-2012, 01:04 PM   #7
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Sue, Benfotiamine is a fat and water soluble B1. I take that, not B1, we all talk about Benfotiamine. Works great with ALA. Also, a GOOD pure fish oil is great.
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Unread 04-26-2012, 05:30 PM   #8
Shezian
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Yes, Benf is the one l have ordered.
What is the difference between L-carnite and ALA?
I take 6 -9 fish oils per day.

Sue
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Unread 04-27-2012, 08:30 PM   #9
dyctiostelium
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Hey Sue!
On the contrary, thanks for writing directly: forums are great in general but even better when they get personal
I definitely can relate, similar stories, this thing popping seemingly out of nowhere and SO hard to get anything that could look as a concrete, potential solution. Plus the worry, uh?: "Dang what the heck, my kids are still so young, I can't possibly have the luxury of getting sick, what am I supposed to do now?" At least it is like that for me, the kids are 15 and 10.
I was actually quite happy with myself this year: I'd been overweight all my life but for the last couple of years I had started rebuilding my life, shook off the depression, rethought the marriage, lost most of the extra weight, exercised daily, got a dog, regained my sense of humor.
But yeah, work, house, long commute, so it seemed practical to forget about meals and just eat anything, preferably sweet, when at all possible. The calories in an ice cream with all sorts of toppings were about the daily caloric requirements, right? And I haven't eaten anything else, right? Then why not? Yeah.

My mother has been diabetic for 15 years, the non-disciplined kind, and she now has neuropathy and numbness in one arm and part of the face. So when my symptoms started (on a Sunday after a particularly awful week) I of course panicked and got myself a glucometer and found out I was prediabetic. Tests followed but that's still the only diagnosis I have: prediabetes and peripheral neuropathy. Related? Maaybe.
Since the options of treatment are basically the same whether the cause of the PN is known or not I'm not really putting energy on removing the "idiopathic" label from mine. *shrug*

Do I drink, you ask? Yeah, I love wine, I enjoy a good beer (so hot in Mexico in the summer ), vodka is a great thing. I'd say I drink about once every two weeks, never more than two glasses/pints. Once every two weeks on average, sometimes I get lucky. But when I get a chance to drink it is always a good, calm moment, a treat. So for the time being I refuse to even consider blaming the alcohol for this, I won't give up something that *perhaps might be discovered that it could in some part be related* and that I enjoy when there are still all these things that are much more likely to be related and in my case are just bad habits that I'm not going to miss.

My latest finding is that coffee could in fact be part of the problem [expect a thread about it soon ] and, yeah, these days I am a heavy double-espresso consumer, I mean, I need it almost every morning (it used to be "with whipped cream", before). So I'm thinking, OK, let's tackle that first if indeed seems appropriate, leave my Shiraz alone.
I like to think of it as "evidence-based lifestyle changes".

So, you see, I'm also in need to talked it all out
Let's keep talking.

Try to take it easy,
sUsY


Quote:
Originally Posted by Shezian View Post
Dyc- l am new here as well. Also a mother, with twin girls' who are 10 years old, and am 41.
My feet and hands started burning and tingling and going numb.
(...) I tended to skip meals and have a huge dinner, but l need to change that.
(...) I am normal weight range and have always been healthy and energetic, and have exercised all my life.

Are you in the normal weight range? What did you eat during the day? Did you drink at all? Also, are you getting any blood tests or other tests to find out what could be causing your PN?

Sorry for all these questions, but ou are my age and a mother so l can reall relate, and not feel alone with all this.

Sue
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Unread 04-28-2012, 01:43 AM   #10
Shezian
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So nice to chat with you. But sad we have PN.
As your mother has it, it seems maybe in your case genetics could have some involvement.

I used to drink strong coffee each day, and it caused me to get quiet dizzy, so l cut back to a weak coffee, and only one per day, first thing in the morning and am fine with that. Though sometimes when l go out of coffee l get the spaced out feeling again.

You sound like you drink moderately, whereas me, l have too many parties in the past 6 months and l know on some nights l could have easily consumed 2 bottles of wine to myself, and l am only small build. So way too much for me on too many occassions could have caused this. But asked Neuro, and he said l would need to drink like this each day for a long time to cause damage to the nerves. What ever the case, this has made me very aware of my drinking, and now l drink moderately. Only 2-3 glasses at the most.

I have also had some restylane vital facial injections 2 years ago, that l really think started all this. Even though that was 2 years ago and it's not until a month ago NP symptoms began. The gel could have damaged my nerve endings. I had it done to smooth out my wrinkles around me eyes. How stupid was l? I should have listen to my gut that day, instead of rushing into it. I really, really think this is the cause of my PN. If only l could turn back the clock, l would go back to being the energetic, happy and healthy person.

My symptoms are no where near as bad as others here. Started with burning , hands and feet for 3 nights. That went away. Then went to sore feet and legs while standing and walking. Now one month on, have nothing much but sore feet when l get up from bed in am, or from sitting or lying for a while. Oh, and now l sometimes get muscle twitches, and kind of light vibrations in parts of my legs. But nothing that hurts too much or stops me from doing anything so far.

What worries me, is that l don,t know where this is heading, and how l am going to be in the future? That is the part that is hard to deal with for me. As l always imagined myself along healthily, but now who knows. It's seems most NP's progress, so that is scary for me.

I had a blood test for diabetes, showed nothing. I think it only tested for highs and not lows. My dad has a diabetes test kit. Maybe l should use his to tell me if l am prediabetic.

Another thing is, l noticed you said you lost a lot of weight?
I've heard a few people say that they developed PN symptoms and it was usually after some weight loss? I wonder if there is any correlation?

We have a family to bring up so we have to stay strong for them.

Sue
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