[Geneo76]

Hi there,
I'm new to this forum. I'm hopefully looking for some answers. I just turned 56 years old and have been bothered by neuropathy for about 2 1/2 years. I don't have any strength to bend the toes on either foot. (Maybe slightly, but not much) So my balance is shot, and I walk like an 85 year old man. I weigh 155 lbs. , go to the gym two times a week and put kids half my age to shame. On the cross trainer I can still crank out 4 miles in 30 minutes. All my blood work has come back negative. This is from a neuro-muscular doc from Washington University in St. Louis. They ran all the "shock" tests and electrical stimulation tests. The Doc said that the core of my nerves are "bad". He said that there wasn't really that much that could be done. The only medicine I take is for epilepsy which I got from an accident at 16. It is controlled. It is not supposed to have anything to do with the neuropathy.
Thanks for any input you might have.
Gene

[mrsD]

Welcome to NeuroTalk...

I have a question... Drugs often are culprits
in PN. What medication do you use for your seizures?

Also most anti seizure medications deplete
Vit D and folic acid.

I can look that potential up for you or you can
Use Google to look further.
Using the generic name in the search
often brings more success.
Example: use phenytoin instead of Dilantin.

Should a medication be a factor for you discussion with
a doctor should be done . Do not discontinue
any drug on your own.

Many doctors do not know the drugs'
Potential for causing PN and some will
not admit this if they don't want to interfere with
your therapy, with another doctor.

[Geneo76]

The medicine I take now is Topiramate, 200mg tabs two times a day and Levetiracetam, 1000mg tab two times a day. I started taking this about fours ago and have not had a seizure since. I was wondering if it may be the drugs, because I started to notice a slight limp about a year after taking the new medication. Of course, none of this tied together until I started thinking back to a possible cause.
Thanks,
Gene

[mrsD]

Okay, Topamax has a warning about it...involving bicarbonate levels. Does your doctor test your bicarb levels periodically?

Many doctors have ignored the FDA and company warning letters about this.

I'd get a Vit D test anyway, and also while you are at it, get that B12 and folate tested (B12 should be over 400pg/ml and not reported to you as
"normal" which doctors still do. Levels below 400pg/ml still are called normal but can result in nerve damage.

Did you ever take Dilantin before long term?

The drugs you take are too new to appear on the PN lists yet. That means there is not a definitive answer. But Topamax is hard on the kidneys, and can cause acidiosis by lowering bicarbonate in the blood, and acidosis can affect nerves. It also can cause glaucoma in the eyes, so you need to have eye check ups at least once a year and better every 6 months.

More details here:
http://www.pdr.net/drug-summary/topamax?druglabelid=947
I'd discuss this with your doctor.

[Kitt]

Welcome Geneo76.

What did the doctor mean when he said that the core of your nerves are bad? Just curious.

[Susanne C.]

I was wondering that too, did he mean the axons? I have axonal hereditary neuropathy (CMT type 2). I am also unable to move my toes or much of my foot , although the numbness preceded the weakness by many years. Does anyone in your family have neuropathy symptoms?

[Geneo76]

Thanks for the replies. I did take Dilantin for many years. I know some meds are hard on the kidneys. I haven't had a blood test on them in a couple years. I will look into having levels checked for Vitamin D.
As far as my "core" being bad. He compared it to an electrical wire. He said the outside sheathing was fine, but the inside wire, ( maybe he didn't say core), was the problem that I had.
I see some folks suggest taking Omega-3 for the nerves. I'll start with this. It can't hurt
Gene

[mrsD]

Omega-3s are very helpful, but mostly for myelin sheathing.

For the cells themselves, you might consider some acetyl carnitine. This will improve the energy production inside the cell by the mitohondria. It is the main supplement for cellular functioning inside the cell. 1 to 2 grams a day in divided doses is the usual dosing. Start at 500mg a day and work up to 2 grams a day after a couple of weeks.

[Kitt]

Originally Posted by Geneo76

Thanks for the replies. I did take Dilantin for many years. I know some meds are hard on the kidneys. I haven't had a blood test on them in a couple years. I will look into having levels checked for Vitamin D.
As far as my "core" being bad. He compared it to an electrical wire. He said the outside sheathing was fine, but the inside wire, ( maybe he didn't say core), was the problem that I had.
I see some folks suggest taking Omega-3 for the nerves. I'll start with this. It can't hurt
Gene

Sounds like the axon. Dilantin has an uncertain or minor risk for a CMTer.

[Geneo76]

I don't have anyone else in the family with a history of neuropathy. My toes don't have "pain" like some people do. Just a slight burning or numbness where the toes meet the foot. I really only notice this after I kick my shoes off in the evening. But the walking is more flatfooted than anything. It is very frustrating, to say the least. With all the information gleaned here, maybe I can find a resolution to this problem.
Thanks,
Gene