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annie56
10-20-2006, 07:20 PM
After five plus years of being told their is no cause of my small fiber pn - I was switched from a regular neurologist at the Mayo Clinic to a neurologist who is a specialist in peripheral neuropathy. The first thing he said is he wanted to do a glucose tolerance test on me. I have fasting blood sugar numbers that are in the normal range (but within five points of not being so) and my AIC numbers have also been in the normal range - but new studies are showing that people like me who have been saying they have erratic blood sugar - they now check for this thing called - Impaired Glucose Tolerance - well sure enough its ME! Regular blood sugar is 100-140 two hours after the glucose is taken - and 200 plus is a confirmed diabetic - well I was 154 which means I am "pre-diabetic" and have this impaired glucose tolerance.

So now I am to go on a diabetic diet and I am to exercise 30 minutes a day - cardio! It is so frustrating because it is so hard for me to do anything that increases my blood flow - the pain goes up as the cardio workouts begin. So now what?? He suggested a stationary bike, and basiclly to bite the bullet. The hope is to check me again in six months and see if this exercise and diet plan will lower the regular pain level by leveling my blood sugar. It all makes sense to me, but I am so frightened to even begin the exercise. With the lyrica now added to my narcotic treatment, I finally feel some relief in my level of pain - so I know I need to do it - but I am trying to psyic myself up to give it a try.

Does anyone relate with this impaired glucose situation and does the increase in exercise really make the pain decrease? I need a buddy or someone to help me through this. Anyone out there have this diagnosis?
Thanks friends :)
Annie

Quahog
10-21-2006, 04:04 AM
Hello,

I think I can relate. I also have PN that was found via an EMg/NCV test a few years ago. I have numbness in both my feet legs and buttocks, Absent ankle reflexes, increased right leg reflexes too. I also have numbness in my hands but I don't think that is from PN. Then there is also the other issues with my spine. Anyways no one could find a reason for my PN and my BS number were in the pre-diabetic range. So I had a GTT and it was quite surprising. I really don't remember my number but I do remember they told me at one point it was over 200 hundred.

So I too changed my diet gave up the high carbs, sugary foods and I started walking everyday. I was SOOO hard and it still is but you know what it became easier and my BS number improved and it seems to me that my PN is better. The numbness isn't quite as bad and the pain is much less.

I would definately give it a try. It could really help and I for one hope it does.

Good luck to you

Glenn

glenntaj
10-21-2006, 07:41 AM
--that neuropathy can occur--especially the painful, small-fiber variety--in those who show impaired glucose tolerance on long (3-5 hour) glucose tolerance testing, well before they have readings that would cause an endocrinologist to designate them as having "frank" diabetes.

On these boards, brian is one who presented with this, and there are probably others as well.

I have been advocating, through my own research and discussions with the researchers at the Cornell-Weill Center for Peripheral Neuroapthy, that if diabetes or impaired glucose tolerance is being contemplated as a possible cause, a three to five hour glucose tolerance test with concurrent insulin levels should be considered, as merely taking a blood glucose level, or even a HemoglobinA1c, does not catch all "pre-diabetic" glucose intolerant people--or even all diabetics, unless their blood sugars are grossly deviant at all times. (I've now successfully argued this to insurance companies twice for other patients when their insurances balked at reimbursing for the long testing--partly by submitting some of the links below.)

It is the pattern of responses to glucose challenge over time that is often more indicative of whether a person has a degree of glucose dysregulation.

The idea that neuropathy can set in well before frank diabetes could be diagnosed under present guidelines is not something even most endocrinologists are taught in med school; most are taught neuropathy is a long-term complication that shows up well into the condition).

See:

http://intl.neurology.org/cgi/content/abstract/60/1/108

http://www3.interscience.wiley.com/cgi-bin/abstract/85007933/ABSTRACT?CRETRY=1&SRETRY=0

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?itool=abstractplus&db=pubmed&cmd=Retrieve&dopt=abstractplus&list_uids=16448668

http://www3.interscience.wiley.com/cgi-bin/abstract/85007929/ABSTRACT

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16769858&itool=pubmed_AbstractPlus

Silverlady
10-21-2006, 10:31 AM
Glenn,
Only the first link came thru. It says it's not being found.

Billye

glenntaj
10-21-2006, 10:24 PM
--and it must be some function of this board that's shortening the url's--I have posted similar lists at other boards and have had no problem with the linkages (such as at Neurotalk--where the same list is in one of my posts and all the links work).

So, in the interest of having the info, I'll post the link to there:

*********************************com/showthread.php?p=21828#post21828

Let's hope this works.

joy
10-21-2006, 11:32 PM
I'm in the same boat. But I have fallen off taking my blood counts but now is the time to get back serious with it. I believe what you are doing does help. I have to just use the pain meds and exercise increases my pain levels because I have two pages of hip and back problems. But when I do what I can in the way of exercise, even if it is just stretching, it has to help, I figure!

CarlieAZ
10-22-2006, 01:32 AM
Annie56,

My small fiber PN pain is pressure-induced, i.e. worst when on my feet and best when not on my feet. That's why I try to use exercises that do not require pounding of the feet, such as bicycling, swimming, stretching and upper-body. It has been a difficult transition for me to change from many years of jogging, hiking, tennis and golf. I do believe that exercise and weight control are very important, not only for preventing the onset of diabetes, but for overall good health.

I went to the Mayo Clinic Scottsdale about two years ago for a second opinion on PN diagnosis. My neuro then was not a PN specialist. I would appreciate your letting me know the name of the neuro there now who specializes in PN.

Carlie

annie56
10-22-2006, 03:10 PM
Thanks everyone for your replies! First, the neurologist that I now see at the Mayo in Scottsdale is Dr Ben Goodman. There also is another doctor - Benn Smith, who actually is one of the authors in the articles that I read on the links that Gllenntja sent for us to review. He is the head of the EMG department and doesn't see too many patients anymore- but I was real impressed with Dr Goodman. I know this idea of idiopathic small fiber pn being related to impaired glucose tolerance or pre-diabetes, but there is a lot of evidence out there to show that this is probably the cause of my neuropathy, since I have no other accidents or such to be the cause. I searched on google for igt and neuropathy and found 222,000 articles on it! So there is beginning to be some significant proof that the two are connected.

I always read the - so what now - part of the articles and they pretty much all agree that exercise and diet and weight loss has a significant effect on igt and hopefully that will make a difference in the amount of pain I have to deal with as I do these things.

So.... tomorrow will be the day that I start this exercise plan - with the support I find here on the board, I know that I can do it. I keep watching my weight increase since I have been on the Lyrica (which I call my miracle drug!) I have gained about a pound a month - and that has to STOP. It is all so discouraging since it is such a cycle of take the drugs and the side effects cause weight gain and make me feel very very tired - but the best way to help myself is to loose weight and get busy with exercise. But that is life sometimes and we have to do our best, right? Of course...

Thanks for the support and I'll let you know how it goes as I start the plan. The weather is so beautiful here in Phoenix - a just planted my "spring" flowers this morning with my grandchildren. We plant here in October with our petunias and geraniums - they will grow until May - when the heat arrives.

Hope you all have a great day - and Thanks so much for the articles and for the support -
Annie:)

mrsdoubtfyre
10-22-2006, 04:31 PM
There are supplements you can do to improve glucose intolerance. I have been there and done that.

1) Chromium picolinate helps many.
2) Alpha lipoic acid also lowers blood sugar in high doses-- since it is used for
PN...you get 2 actions for your "buck".
3) Inositol 1-2 grams a day + taurine (amino acid) also helps with glucose
control. Studies show diabetics lose inositol in the urine. Inositol comes in a powder, and is easy to take (pleasant mixed in juice).

4) Following the diets recommended for Syndrome X help. They have lower carbs, higher good fats, and higher protein. I think one of the best is
The Zone diet... it has shown in studies very good glycemic control

5) People with poor glucose control, lose magnesium thru the urine as well.
Diabetics even more so. So good attention to magnesium is important.

6) eating smaller more frequent meals, sometimes is a good solution. This prevents the high post prandial (after eating blood sugars). Avoidance of high glycemic carbs is also important, as well as avoidance of high fructose corn syrup.(this sweetener is is thought to actually CAUSE diabetes--but is still
controversial).

The basic cause of diabetic neuropathies is thought to be elevated sorbitol levels at the nerve endings. This comes from poor glucose metabolism.
you can read more about the polyol pathways here:
http://en.wikipedia.org/wiki/Diabetic_neuropathy

When all else fails, a trial of RX metformin can be very useful..even if you are not diabetic yet. However, some people (including me) get acidosis from this
drug, so renal tests should be done often in the first year of therapy.

Brian
10-23-2006, 09:14 AM
Hi Annie, My PN was caused through Prediabetes that was picked up by a 3 hour glucose tolerance test, and was also low in b12., my neuro said that i had small nerve damage and a little large nerve involvement as well.
A change of diet, no high sugary carbs, lots of b12 has reversed it now to a 98% recovery, i can't say 100% because every now and again i will get a very slight burn but doesn't stay long and goes away and they are getting more further apart as time goes on, my feet were numb, but now they have regained a lot of the feeling back in them.
When the seasons changed so did my burning, the warmer it got outside the more my feet and up to my knees would burn worse, now hot days do not affect me what so ever, so PN caused by higher than normal blood sugar levels can be reversed and don't let anyone tell you they can't, it took me approx 2 years to get to this stage, its slow but well worth the effort.
As far as exercise goes, i used to walk up and down the local swimming pool, non weight being exercise is so easy on your feet, no need to suffer to get good results.
good luck
Brian

annie56
10-24-2006, 02:30 AM
Brian - While reading your post, tears came to my eyes. I felt some hope and that is a really strange feeling after almost six years of feeling my health become worse and worse.

I started exercising today - a brisk walk with my dog, and it went pretty well. It is a start, even if it was about 15 minutes - I am so worried about the muscle spasms that come when I over due things - so I believe this was a good start. I did some good stretching too -

I spent at least an hour studying sugar substitutes on the internet and I am overwhelmed. Lots to read - and to process. But thanks to all my friends here I am finding the strength to try this new way of life. I have been having a cup of herb tea in the evening and I have found that very setteling from a busy day and it also keeps my hands from thinking they need to eat something.

Well - thanks again and I'll be in touch - there is so much to learn - but now I have some hope that just maybe this has been the worst of it, and maybe just maybe I'll be like Brian and so many others who have reversed this pain!

Have a great day!
Annie:)

darlindeb
10-24-2006, 09:19 AM
MrsD--where do I find Alpha lipoic acid, I have been looking, not too throughly as of yet, but I did look for it. Of course, I have to have all vitamins and the like free of gluten, soy, corn, rice, etc.

mrsdoubtfyre
10-24-2006, 12:49 PM
http://www.iherb.com/store/ProductDetails.aspx?c=Herbs&pid=JRW-20010

Many of the producers have rice in them, esp the capsules.

But I would call Jarrow, and ask anyway..or email them.

Brian
10-26-2006, 12:56 AM
Annie, I am hardly ever at this site anymore these days, but i just remembered i answered your post.
I am glad you can see now that Neuropathy caused by prediabebtes is fully reversable, it does take time for the nerves to heal though, i think a lot depends on how much damage was caused before you start correcting it, as our bodies have a remarkable ability to heal itself , if given the chance to do so.
Its a bit of a bumpy road when healing goes on, so hang on tight you will get there in time.

I would ask Mrs D what supplements may help muscel spasms, i used to get terrrible calf cramps that was fixed straight away with Magnesium and Calcium supplements.
good luck
Brian :)