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.
Quote:
Originally Posted by hotfeet
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?
|