[Littlebit63_99]

How many of you out there have nerve damage??

Is it mild?/severe?

I have Gastric Entropothy and Gastric Perisis.....I also have Nerve damage in my legs and feet(don't know clinical term for it), and the beginnings of it in my hands.

I take Zelnorm, Aciphex,Compazine, and Xenical.....all for my stomach.

And Neurontin for my legs and feet. I used to take Dilantin......but, it caused a side effect so I switched.

I was denied an implant that may have helped stimulate the stomach...........insurance wouldn't cover it because of one test.

The nausea is the worst.

Anyone Else??????

[lgvincent]

I may have problems similar to yours. In September of 1996 I had a small spot on my right big toe that became numb. Since then, I've begun having numbness in various fingers and toes that has now become constant in the lower right leg and the little finger of each hand. I took Neurontin for a while but it didn't help so I switched to Carbatrol. I haven't been able to afford it for the last year and the numbness began to grow worse last fall.
I also have a hard time eating. If I eat too fast, I get intense pressure and I can't burp. Many types of bread seem to cause the worst problem although cheese has also created problems at times. When this happens, I also have a hard time swallowing. It's really hard when I go into insulin shock when this happens because I can't swallow anything to treat the insulin reaction.

[HeatherP]

I'm sorry to hear this is happening to you, Littlebit. It sounds awful.

So far, I appear to be complication free, although every once in a while I do get a slight pin-prick sensation on the bottoms of my feet.

HeatherP

[Littlebit63_99]

HeatherP,

Thank you, and it is not fun..............I am trying not to feel sorry for myself and am trying to gather info......like, most of my nerve damage started after 25 years of diabetes. What about you? When did you first get the pin pricking feeling in your feet......any meds? do they work?

LG,

My specialist checks my throat every three months......the trouble you have swallowing is not unheard of.....I have started to choke often and figure the next time I see him he will tell me the swallowing mechanism is failing....nerve related. Try things that sit in your gums......life savers, the gel that is sold at drug stores....when you can't swallow........tell me more about Carbotrol, please......I have never heard of it.

[notme]

Hi Littlebit,

I have some nerve damage that was diagnosed by a EMG last year. I have had type one diabetes for 17 years and the nerve damage to my arms and legs started about 3 years ago. I think some of the problem with my feet is neuromas and some of it is nerve damage. The most annoying problem I have is with my feet, numbness a feeling of swelling, right below my toes. The balls of my feet hurt when I walk for a long distance. My arms is limited to the radial nerve, that affects my shoulders and arms. My baby finger is prone to twitching, but the most painful is the cramp like feeling I get under my arms and down my sides and back. I take Neurontin also, but it isn't nearly enough.

So far I have avoided any gastric problems and for that I am happy. I have noticed the past few years I have slowly gotten progressively worse and that scares me a bit.

I didn't take good care of myself for years after diagnosis. I finally got on the ball in 2001 and got on the pump. I exercise daily. Walk five miles a day or rollerblade. I also kayak and hike. I don't think I can undo the damage done, but hopefully I can stop any further damage.

I am so sorry you are having so much difficulty. I would definitely suggest talking to your doctor and seeing if any type of exercise would help you if your not doing that already.

Good luck and I hope that you can find some answers!

Nancy

[lgvincent]

I started having the nerve problems after having had the disease for about 28 years 7 months. Looks like I misspelled the Carbatrol. I know it's made (or marketed) by Shire US, Inc. and I could be wrong but I think it was made to treat seizures. It did seem to help my problems with the nerve damage but I'm told it's a really expensive drug and I'm unable to get it any more. The bottle has a telephone number for Shire at 800/828-2088. They might be able to help you a little more with it at that number, or your doctor may know about it.

[HeatherP]

12 years T1 for me, and the pin-prick sensations began in the last year.

[Littlebit63_99]

notme,
Thank you! Am doing all I can right now.....

LG,
I think I spelled it wrong...sorry. And it sounds like you lasted longer than me.....28 years.....I only went 25 before nerve damage. Good for you!!! Now, how to deal???? the million dollar question, huh?

I have had very good control for most of my 33 years, but that hasn't stopped the nerve damage. And, considering that I have NO kidney damage, very little eye damage and low blood pressure and cholesterol, for the most part.....pretty good, but, this stomach stuff is the pitts and was hoping to get new insights here.....

Thanks,

Ps, HeatherP??? does anything help?

[zookeeper671]

Realistically speaking, is it a given that a T1 diabetic will develop complications such as nerve damage in their future? What if they maintain very strict control? Just how long can a strictly controlled T1 go without suffering from complications if it's a given that they'll occur? Is there anything that can be done to reverse the effects?

(((((hugs to all who are suffering))))))
Angie

[HeatherP]

I take Imipramine, which I think I've heard can help w/ chronic pain, but I don't know if it helps w/ numbness. I take it for depression, and I have since I was 15. It's also called Tofranil.

As for the prickly sensations, it's very minor and is not constant, and the endo just grunted when I mentioned it - and I'm not too thrilled w/ him for other reasons, so I may not being be seeing him again after Monday.

Have you or can you see a neurologist?

My heart goes out to you,
HeatherP

Angie, there was a long term study called the DCCT that concluded several years ago that indicated that tight blood sugar control reduced and delayed complications. Up until this study was done, it was only a theory. Ideally, the best thing you can do for yourself is maintain tight control. That's easier said than done, though, as we all know.

[Littlebit63_99]

There is no way to know what complications...to what degree any given diabetic will get......we are all individuals.....

Hope I didn't scare anyone!!!!!

[zookeeper671]

Is the medication you're talking about called Tegratol (Carbamazepine)?

Carbamazepine is used for the treatment of seizures. It also is used to treat certain types of nerve pain (glossopharyngeal neuralgia and true trigeminal neuralgia).

(((hugs)))
Angie

[Littlebit63_99]

I had a Really good neurologist.....unfortunately, he retired. His replacement is mediocre at best.

Dilantin was used for eplileptic siezures when I started using it......seems alot of seizure meds treat nerve damage.

I will check into Carbatrol and Trofranil, it never hurts to ask.......maybe one or the other will help me.

We will all benefit from exercise, diet, and the best control we can acheive.

I want to thank everyone!!!

[lgvincent]

Zookeeper, yes, it is carbamazephine!

[Belinda]

The nerve damage is called neuropathy.

I have it to a degree. The Dr. kept two of my toes to be sure. (No I didn't lose them I know where they are! LOL) I get checked always by the Dr. and he is amazed at how ticklish my feet are....go figure.....

Good luck to all of us...seems like we have all health issues covered by some means