Like to hear from diagnosed poly neuropathy members
 

Good Morning,

I just received my EMG report back and was diagnosed with a Sensorimotor polyneuropathy, axon loss in type, severe in degree electrically with regards too the sensory fibers of the lower extremities and moderate in degree electrically with regards to the motor fibers of the lower extremities.

How do you deal with the symptoms? Are you still working? How does it affect your daily life? What Vitamins have you had success with daily.

Are you on Gabapentin or Lyrica?

Does it improve over time?

Has it gotten worse over time?

Mine is Diabetic related what is the cause of your Poly neuropathy.

Do you go for physical therapy?

This is all new to me and I would appreciate any enlightment you could share with me.

Hi,
I have had this for close to 30 years. When I was first diagnosed the doctor first thought I was just making up the illness to get out of my situation at the time, when I convinced him that I really did have PN pain, he prescribed a multivitamin which was a total joke. So I went on silently suffering for another 16 years, then I went to a Nuerologist who diagnosed me as hereditary Neurapathy, this was 2003 before Lyrica was invented. I was told there was no cure, so I just went on with my life and pain. A foot doctor told me about Lyrica in 2007, I had just researched it on Google before going in to see him, I read about suicidal tendencies as some of the complaints, the foot doctor who happened to be helping with the Lyrica study at the time, knew nothing of this...
Fast forward to present day, the Ruemotolgist thinks it is caused by Pre-diabetic insulin resistance. Gabapentin had horrible side effects, brain fog and tachycardia, so I was taken off it after a month. This is the first line of drugs they will offer, Gabapentin, if it works for you is a better choice of the drugs, it is just hit and miss, some do better then others. It is in the same class as Lyrica, so if you have problems with Gabapentin, I was told the Lyrica would also cause problems. This is a fairly safe drug, as it is not processed through the liver, like some of the other stronger drugs.
As far as I am concerned Physical therapy would have no effect on Neurapathy, unless it is caused by a physiological problem. Poly Neurapathy is neurological in nature. Now I did see one study in Oregon where they found that a abnormality with the vertibrea of the neck was causing a pinched spinal cord, reducing the diameter when the head was tilted back. They found that when a additional MRI was done with the neck tilted bak it revealed the problem. They have claimed to have been able to help 80% of the patients with PT excersises.
I will try to find the info on this.
Hope this is helpful!
Jon

The medical term is "Cervical Spinal Stenosis". the narrowing of the spinal column, is thought to only happen with older age, but this doctor found that when the MRI is performed with the neck tilted back, it reveals a reduction of the spinal cord.

Hi Jon you were very brave to go through neuropathy alone doctors are unbelieveable.

I tried Gabapentin it didn't do much for me I was put on Lyrica . . . No suicidal thoughts yet and actually works better for me then the Gabapentin.



It puzzles me that sometimes the neuropathy flares up for a couple hours then like waving a wand I don't even know I have it. Is there a time when it goes into to remission.


is this Neuropathy the travelling kind

I go for an MRI because they suggested some compression on the Neurology report. It says a superimposed right lumbosacral motor radiculopathy cannot be fully excluded.

Polyneuropathy--
 

--just means many nerves are affected ("poly" means "many" in Greek word roots).

Most of us here have "polyneuropathy"; it's rare to have neuropathy with only one nerve tract affected ("mononeuropathy") unless the cause is a specific trauma or compressive injury in a particular area. Most systemic causes, be they metabolic (diabetes, thyroid), nutritional, autoimmune, or toxic will effect a large number of nerves.

It's certainly possible, though the "double crush" mechanism I've written about, to have more than one cause compromising nerves; a "mononeuropathy" due to compression, such as an arthritic spinal spur or disc bulge on a spinal nerve root, can be exacerbated by more systemic conditions that would affect many nerve roots. (Spinal radiculopathies are more prevalent in those with diabetes, for example; the compression symptoms at the nerve root are made worse by the nerves already being damaged by blood sugar dysregulation.)

Hi Glentta
 

Thank you for the information. It is scary because don't know where it's going to travel. I read can effect organs and that is really scary.

Last night I was up all night with the nerves in my feet jumping every time I would fall asleep my feet would jerk I wonder what is going on with that too.

Another thing my feet burn like blazes then they will stop and be my normal feet for a few hours. I am happy for that but why does it not just stay gone.

Hi Jon I just had to share this with you . .. My husband was diagnosed with myelodysplasia (low blood platelets) and was told by his specialist nothing could be done about it.

I made lots of spinach with garlic plus I make him a protein drink everyday with spinach, almond milk, berries (strawberry/blueberries) banana, and Shaklee Protein mix. His platelets when his specialist told him nothing to be done were 71,000 per that was five years ago today his platelet are almost normal being at 123,00 per normal I believe is 150,000 plus,

And we pay these guys the big bucks.

They don't teach the doctors about nutrition in Med School! I had to spend 5 days in the hospital last year, because I contracted staph infection following a surgery, (there fault). The nutrition was so bad in the hospital, I told them I was diabetic, they kept sending me sweets and carbs, no protien! The nutritionist came in and asked why I wasn't eating the food, I told her it would kill me...
They do not have a clue...

I don't know what the curriculum is for Drs . . . I think pretty soon they are going to be replaced by Dr's that know the whole spectrum of health.

You are a good example you were told no cure nothing to do about it just live with it.

I like my Dr. and I had confidence in him but I don't know anymore if I do.

My feet have bothered me since October last year and all he did was prescribe GABA the by my request Lyrica.

The Appt I have to see the Neurologist was my idea cuz I was in so much pain. That was when the DR suggested the EMG.

He should have done that back in October not take something rub it up the bottom of my foot and dismiss me.

They better watch out the Drs. They just practice on us and want the big bucks.

I also call My Dr. office to get set up with a nutritionist .. . . He should have done all that . .. .

Maybe it's my age 60's they could care less about us.

You can find Integrative MD's. There are good sites online to help.