[EHorst99]

I'm a new member of this "club" at 49 years old. With first tingles noticed 11 months ago, it's now progressed to painful feet, burning, and a feeling that the tips of some of my toes are constantly being pinched. I just started on gabapentin a couple weeks ago and I'm trying to find a level that address most of the symptoms while leaving me able to function at work.

They've run extensive tests, but I'm currently labeled "idiopathic". From reading, I'm going to request a few more tests most specifically testing for impaired glucose since I'm over weight and too inactive.

My question for all of you:

Does this ever stop progressing?
Does the speed of early progression indicate anything about how quickly it will continue to progress?

Over the last couple months, it's now painful for me to spend much time on my feet -- even for the length of one of my children's soccer games -- whereas we spent time at Disneyland in July and I noticed nothing significant.

I'm now worried that I'll be largely disfunctional (walking wise) before too long.

What has been your experience?

Thanks so very much!

[Silverlady]

Read this post and the "stickies at the top of the page"

http://neurotalk.psychcentral.com/thread43699.html

Billye

[Brian]

Hi EHorst99 & welcome to this forum.
I do think that a 3 -5 hr glucose tolerance test is a great idea, i was around your age when my symptoms first started and was overweight & inactive as well, Prediabetes can certainly cause the exact same neurological symptoms as a full blown diabetic, any neuro that disagrees with that, is not up to date with current neuro findings.
Things can get better, especially if the cause can be found and rectified, other idiopathic PN 'ers have improved with supplements, [ read the stickies on the front page up top ] peripheral nerves do have the ability to regenerate once in the right enviroment.

best of luck to you, i hope you can find the cause.

Brian

[darlindeb25]

Has your doctor tested your B12 levels? My neuropathy appeared first as carpal tunnel over 10 yrs ago. A year or so later, my toes would go numb. I asked my doctor about my feet and his response was, "It's connected to your carpal tunnel, it's all the same nerve." End of story with him. As it progressed, my toes would be numb, my feet would burn. Five years ago, I had a job where I was on my feet, on a cement floor all day...we didn't even get to sit down for lunch, and my feet were in horrible shape. Then I moved here, and have a job where I am up and down all day. I have good medical insurance, and 4 yrs ago, I started taking B12 daily. I started at 1000mcg daily, yet was taking cynacobalamin, which was the wrong B12, then I switched to 3000 mcg methylcobalamin B12 daily. After 3 1/2 yrs, I can sew by hand again, without my fingers getting too numb, rarely have burning in my feet, my toes do not go numb.

I still have neuropathy, and always will. Yet, I have slowed the progression, and maybe reversed some of the damage. I have cellphone vibrations in my feet, sometimes little electrical shocks in my legs, cold spots, bugs crawling...which I can deal with. Best of all, no meds for now.

[nide44]

Originally Posted by EHorst99

.........They've run extensive tests, but I'm currently labeled "idiopathic". From reading, I'm going to request a few more tests most specifically testing for impaired glucose since I'm over weight and too inactive........
........My question for all of you:
Does this ever stop progressing?
Does the speed of early progression indicate anything about how quickly it will continue to progress?.........

Have you seen the complete list of tests for PN (?) at:
www.lizajane.org
Go there. There's a good start for you.

Answers to your Q's :

1- it can stop progressing.
Mine has, for the last 4 years.
Each day brings a new set of circumstances and new conditions. It could start to progress at anytime, or stay this way for many more years. No one knows and each of us is different.

2- Not necessarily. I don't know of any comparisons or studies or even observations regarding speed of onset relative to continuing speed of progression.

Maybe 'glenntaj' will jump in and add more info. He's an encyclopedia of PN facts.

[MelodyL]

Hi there.

I can also attest to the fact that in some cases it most certainly can stop progressing. In my case, it was the Methyl B-12 supplements that I began taking as soon as I was diagnosed over a year ago. Best thing I ever did.

I take 5000 each morning. My last B-12 level was 2000 so I store it quite well obviously.

I have no symptoms whatsoever unless the weather is nuts or I am under a lot of stress. But 99% of the time, I have no symptoms so that's just fine by me.

My advice to you? If you are overweight, start eating sensibly FROM TODAY ON. Your body will love you for this.

I made a complete overhaul of my life by changing what I put into my body. I literally re-invented myself. I had to make a decision. I made it.

I now even grow my own sprouts in my kitchen. I happen to love salads, fish, sprouts, whole grains. I don't go near anything white, nor do I put sugar in my body. Easy on the salt too.

Many major changes. Didn't happen overnight. But it did happen.

So I wish you good health in your future. Look into the Methyl B-12. It's the best darn thing I ever did for myself.

Best of luck

Melody

[sbvcrn]

Originally Posted by MelodyL

Hi there.

I can also attest to the fact that in some cases it most certainly can stop progressing. In my case, it was the Methyl B-12 supplements that I began taking as soon as I was diagnosed over a year ago. Best thing I ever did.

I take 5000 each morning. My last B-12 level was 2000 so I store it quite well obviously.

I have no symptoms whatsoever unless the weather is nuts or I am under a lot of stress. But 99% of the time, I have no symptoms so that's just fine by me.

My advice to you? If you are overweight, start eating sensibly FROM TODAY ON. Your body will love you for this.


I made a complete overhaul of my life by changing what I put into my body. I literally re-invented myself. I had to make a decision. I made it.

I now even grow my own sprouts in my kitchen. I happen to love salads, fish, sprouts, whole grains. I don't go near anything white, nor do I put sugar in my body. Easy on the salt too.

Many major changes. Didn't happen overnight. But it did happen.

So I wish you good health in your future. Look into the Methyl B-12. It's the best darn thing I ever did for myself.

Best of luck

Melody

Hi Melody (and others)
I am Sbvcrn and posted that I have had numerous negative tests including a negative (normal) skin biopsy BUT I still have burning feet, legs, hands, and arms. My B12 was normal (682) and the specialized methy something was normal also. I currently take all the "recommended" supplements and B12
(the right kind) 1000. Since, theoretically I dont have peripheral neuropathy (ha, ha...sure feels like it) do you all think it might help to increase my B12 to 3000 or 5000? How long did you feel some results? Since taking the other stuff (except carnitine that I'll soon start), benfatamine, lipoic acid, Cq10,
senior multi vit, vitamin D3 and probably others I cant think of I havnt noticed any improvement...only worsening. Fortunately, I have no problems with being on my feet and no muscle weakness so I am blessed that way.
More and more wearing clothes are becoming a problem as I cant stand many of the fabrics against my skin. At this point I am willing to try anything.
Thanks

[mrsD]

to increase the B12 to 5mg a day. I'd try this for 3 months.

600's are borderline for B12. (anything below 500 should be supplemented) So at 600 something you
are in the very low normal range.
I would make sure you get activated folic acid too. Along with P5P which is activated B6.
They work together.
The best folate is Metafolin....which has just returned to OTC status:
http://www.iherb.com/Search.aspx?c=1&kw=metafolin

Make sure you take it on an empty stomach.

[nide44]

That link took me to Selenium, not Metafolin.
Are they the same?

[mrsD]

Originally Posted by nide44

That link took me to Selenium, not Metafolin.
Are they the same?

I was doing two things....at the time and that window
for selenium was still open/active.

Thanks for noticing so I could still edit it.

It is now fixed.