My name is Denise. I just turned 46 last week. Since 2008 I have been suffering from a genetic form of neuropathy that I had confirmed in 2010 by a biopsy. About every 6 months or so I get a really bad spell where I can't stand to be touched, where clothes, etc. for about 2 weeks. Then shortly after that a new symptom appears. So far I have minimal problems with my sphincters in my colon being weak, my lungs are not diffusing, my bladder does not empty out all the way, diarrhea, right side of my heart is weak, trouble swallowing at times (this is my newest symptom), sleep apnea, "popcorn popping" sensation from head to toe (very aggravating and sometimes visible) which causes pain from head to toe as it is constant and everywhere. I also have muscle weakness in my arms and legs. I also have severe swelling from my hips down. I am about 50-60 lbs. overweight and smoke some. I just spent $40,000 in tests at Mayo Clinic to find no answers. I was already in debt about $13,000. I would love a diagnosis, but can barely afford the medicine and drs. I have. I work two jobs, one is cleaning and the other is a secretary. I have two cats that are trained. I have a son who just got engaged and a daughter who just got married. And last, I have been married to my husband for 24 years this year! We have been through so much together. He is having a hard time with this and doesn't understand it and how it affects me. My pain level is about an 8 everyday. I do not take anything for it but gabepetin and that doesn't work very well. Have tried many other drugs with no effect. I guess I am tired and worn out from spend all that money and time and pain to do tests and see drs only for them to shrug and say they have no idea. My question is: Is anyone else going through this?