10 years PN or CIDP
 

Not sure if anyone else are not sure what they have after 10 years of PN.

My new doctor has doing all types of tests as my first doctor thought I had CIDP. He gave me Trileptal and it worked for several years with lots of hot feet, pins, shooting pains, cramps and numbing sensations. I have it equally in both feet and some in my hands. My feet and hands do not like the cold or a fan blowing on them. I never walk barefooted any more. Even carpet increases the pain.

After a couple of years went to a second doctor and he thought I had PN that was hereditary and said they could do nothing for me and added some pain medicine.

So I went about four years thing there was nothing anyone could do to help and learned to live with the above chronic pain. This has been really frustrating.

I finally went to my new doctor and he says I have lost about 30% of nerves by the electrical shock testing in my legs. He somehow thinks I have CIDP. I just took a blood test that takes about six weeks from ATHENA and am scheduled for a spinal tap next week to test for I think protien in the spinal cord.

My new doctor helps more with the pain and tries different medicines. I guess hopefully I will finnally find out what I have.

I played college football and still have fairly strong legs, but my balance is not quite as good as it used to be, especially in the dark.

Any ideas or anyone gone thru anyhing similar?

Wow need to slow down and check my typing and spelling. Sorry about that.

9 years of pn
 

my boyfriend has been dealing with pn for 9 years. He is getting no relief from anything. He is at a total loss. The long list of doctors dont know what to do to help him. I joined the site to try to find others who are dealing with pn and see if we can find some answers here.

9 years of pn...
 

Hotfeet,

my boyfriend has been dealing with pn in his feet for 9 years. He describes them as rubbing raw flesh over glass. His long list of doctors doesn't know what to do to help him. I joined the site to help find answer for him. It is killing me to see him in such pain.

Similar to mine
 

Hi Hot Feet,
I also have had numb feet for 10 years. Last 2 years it got worse with loss of strength in legs and loss of balance. I went on a crash exercise program, diet, supplements, etc. and am much better now. My PN does not have pain, just numbness, tingling and stiffness in one foot more than the other. I did not take the drugs. Instead, tried other treatments, accupuncture, etc. Cold laser only thing that helped, improved strength and balance. Now I'm on a lower carb diet but I'm not diabetic, just trying to keep blood sugar normal. Trying to eat as healthy as possible, no processed food, no processed sugars, restricted amt of alcohol, supplements that Mrs. D. and Liza Jane suggested. I'm better and expect to get well. We are what we eat. If I had the time, i would juice organic fruits and veggies every day but don't have time with working. Hope this helps.