neuropathy...HELP

 i am going to the Gupta group out of hackensack. what i am upset is that they state there is nothing new to be done or tried. what have they done for you and does it help

I'm diabetic, have been since 1999. I've officially been diagnosed with PN since then as well.  However, I can tell you I have had the symptoms of PN since I was 30 years old. I am now 57. I was pulling up non-existent socks even then. My feet have gone thru all the stages of burning, tingling, numbness, 'fireants" biting you, my hands and arms get numb still.

I have full blown small fiber diabetic peripherial neuropathy, motor neuropathy, and autonomic neuropathy. I've been on neurontin before, to me it's an EVIL drug. After coming off neurontin, I took  topamax, amytriptyline and ultram. Now all I take is the ultram.

A very good place to get information about Neuropathy is the Neuropathy Association And one of the best books ever written for those of us with this disease is called "Numb Toes and Aching Soles: Coping with Peripheral Neuropathy" by John Seneff.

As far as neurontin:
Gabapentin also known as Neurontin usually prescribed for Epilpsy. It's most common OFF label use is Peripheral Neropathy pain.  I used Topamax for my PN and Tramadol/Amytriptyline for the breakthru pain.

Neurontin needs to be tritated up to rather large doses for MOST (not all) patients to even notice an effect. And then your body has a bad habit of getting use to that dose, which develops into an upward spiral of ever increasing doses.

It's typically given to patients with Peripheral Neuropathy

MedlinePlus Drug Information: Gabapentin

In the three years that I was on Neurontin, I had all of these:
drowsiness
tiredness or weakness
dizziness
headache
shaking of a part of your body that you cannot control
double or blurred vision
unsteadiness
memory problems
diarrhea
dry mouth
constipation
weight gain
swelling of the hands, feet, ankles, or lower legs

What they don't mention is that the memory issues NEVER go away once you've had them.

Drowsiness/tiredness/weakness did not come even close to describing what I felt and most of my PN friends experienced.

When I first started and every time I tritated up in dosage, I would be absolutely and completely useless to my family. I started at 1800 mgs (felt no relief) and got to 2100 mgs before feeling a difference. By the time I finished I was taking 4800 mgs a day. Some people I know were taking 7000 mgs with no relief.

I got off the neurontin finally in 2006 after coming down to 300 mgs between 2003 and 2006.

I was at 195 when I started neurontine, and hit my highest weight of 250 while on it.

Cymbalta made me worse than the neurontin...felt like I was having a stroke.

Liz

Did your DS help with the diabetes?

Getting the weight off because of my DS helped mine.

But then again, except for right after diagnosis and the last year, my blood sugar control was excellent and also helped healing. Nerves not totally damaged WILL heal but at a super snails pace.

I did not plan on it helping and no one should but for me, it was a happy side effect. Having excellent control is even better even before surgery.

I went on the insulin pump very early in my diagnosis for two reasons...to rest my pancreas and not wear it out...and to gain very good control.

Liz

Are you still on insulin? Sounds like you suffered with the neuropathy. I have been diagnosed in October and am having surgery in April. I have pretty good control but spike sometimes. I am only on 500 mg of metformin twice a day. My A1C was 6.1 last time checked.

Nope...

Date of surgery: 24 Jan 2011
Came off insulin pump: 1 Feb 2011
Last shot of insulin: 11 Feb 2011
Had also been on metformin (glucophage) 2000 mgs a day. By April 2011, I was off it too.

My last a1c a week ago was 5.9.

In Oct 2010, my a1c had climbed up to 8.2 after years of being in the high 5's, low 6's.

Liz