Progressive Polyneurophathy direction needed..
 

Hi,
My name is Dan... I'm 60 years old. Not a drinker. I been told I have Progressive polyneuropathy.. This all started with occasional lower leg, and hip cramps. In about a year period the legs cramps continued and progressed to devastating cramps in both legs maybe 15 or 20 times a day. After many trips to the Doctors I was sent to have a EMG test, MRI, and every blood test known to man. One prescription drug that seems to help lessen the cramp pain and duration is Gabapentin. I can feel the Neuropathy in my feet, ankles, and wrists, and hands. I been having problems walking, maybe 600 feet before my legs begin to cramp. I was out on short term disability for a few months, then forced to return to work by the Insurance company medical board. I’m not sure how long the trip will be or what the destination is. Just looking for a little support or direction.

Hello. I'm dealing with a new diagnosis of axonal sensory motor polyneuropathy, which may be progressive. I've had the peripheral neuropathy for about seven years, but this is a new diagnosis. I'm also having blood work done to see if it can be arrested, or slowed. When I first started out, I had excruciating pain in my feet--so much so that I couldn't walk any longer than five to ten minutes. It took a year to be diagnosed and put on Gabapentin. It has managed to keep my symptoms under control. Could the doctor up your dosage, or try you on another med?

I'm sorry to hear about the cramping (I get that sometimes at night, but it's not too strong or painful.) I hope others, with more knowledge, can weigh in on this.

My dosage is 400mg three times aday. (Gabapentin) I'm told that's not alot..

Just curious, if you've looked into magnesium supplements for the cramping.
Mrs D will tell you all about it. Not the oxide form! :-)
Epson salt foot baths is what she seems to recommend, and from a holistic nutritionists point of view, magnesium is useful for cramping. Good luck
I understand the pain

Is cramping your main symptom?
 

Hi Dan, I wanted to ask you more about how you describe your symptoms, i.e., "cramping". I'm not sure if that is how polyneuropathy is usually described. When I hear the word cramping, I usually think of muscle cramps.

When you say you can feel the neuropathy in your feet, ankles, wrists and hands are you feeling muscle cramps? or is there a better way to describe it?

I hope you can get this figured out. Are you diabetic by chance?

Take care,

Mike

Hi Mike
I would think that everyone in life has had leg cramps in the middle of the night one time or another. Maybe after running or playing golf on a hilly course. That's where my problems began.. It became an everyday thing maybe 15 or 20 times a day. Both legs would cramp up with unbelievable pain. First I was given muscle relaxers and pain pills..This went on for months with no real relief. I began to notice my ankles and feet were becoming numb and would tingle. My doctor sent me to a Neurologists that sent me to have an EMG test..If I would have know what that was, I'd jumped off a bridge before the Appt. Non diabetic so far.. I'm lost and so are the doctors. I can still walk but not more than a few hundred feet before I'm locked up.

What were the results of the EMG?

I was told I had a problem with my ankles and feet.. Info that I allready knew.

I have to wonder if you take statins for cholesterol?

Have you had a blood test for CPK levels?
Abdominal ultrasound to examine for aortic aneurysm?
Cramping from walking suggests PAD or some circulation problem.

Tests for dermatomyositis or polymyositis? This typically starts in the hips/thighs.

I'd consider trying d-ribose. This is a powder that is a 5 carbon sugar, that jumpstarts your mitochondria and gives energy to the muscles.

Here is my ribose thread:
http://neurotalk.psychcentral.com/post708792-40.html

This may be very expensive in stores, but online it is a bit less $$

iherb.com and
Puritan's is where we buy ours.

Also for muscles would be magnesium, that is already mentioned.
You might find the topical lotion that you rub in more effective for certain areas. This is available now (newly) at WalMart...called Morton Epsom lotion. (in the first aid section).

If the ribose helps you, then consider the other supplements for the mitochondria which are:
acetyl carnitine
CoQ-10
R-lipoic acid.

It is not common for typical PN to affect hips first. Usually it appears in the extremities of hands and feet first.

food for thought
 

Hey Dan,

I hope your not serious about exploring bridges in your region. You are clearly having the kinds of problems in which neurologists specialize (tingling, numbness in feet, ankles, wrists and hands; recurrent painful muscle spasms; difficulty walking without pain and the need to rest; relief by gabapentin, etc.). Unfortunately, you seem to have a condition which is hard to diagnose. When looking at some of the more rare and unusual neuropathies, it helps to go to specialized University medical centers to get the diagnostic capacities necessary to figure things out quickly. Otherwise it can take years and years to find relief.


I'd recommend that you follow-up with the with the neurologist that you already saw only to enlist his help to GET A FURTHER REFERRAL to, for example, the Cleveland Clinic for an extensive diagnostic work up. I only recommend the Cleveland Clinic because you mention you are from Northern Ohio and it sounds like it might be close to you (and they have a good program on peripheral neurology.).

Sometimes it take a long time to get into the major medical programs so you might want to take a two prong approach: 1) Get the referral thing going and while you are waiting for your turn at a specialized clinic, 2) systematically try some of the recommendations from MrsD, featherbullet and others in this thread.

The other nerve-pain medication like gabapentin is pregablin (lyrica) (that I know about) and sometimes one might be more or less helpful than the other. It sounds like turning 60 has been a real *****, yeah? I was doing pretty damn well until I hit 50 (I'm 57 now) and then things really started going down hill fast. ;(

Mike