Looking Hopelessly for Answers
 

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?

Hi Denise,

Welcome to NT. Thanks for sharing your background with us. Many here know the frustrations you are experiencing. Sometimes I think the lack of answers are as bad as the symptoms we experience. I am so sorry to hear of your suffering. I wish I had some answers for you or at the least some suggestions. It took 23 years for me to get a diagnosis and then took another 12 years to find a doctor that would and could help me. Sometimes it is a long hard road until you get answers and help but never give up on that. One never knows what the future holds and you may find your answers down the road in time. Dealing with the frustrations (and costs) until you get answers can be devastating and an emotional roller coaster. We are here for you. This place has been a life line for me. There are a lot of very caring people here that not only understand but are also a wealth of information. I hope to see you continue to post.

Happy belated Birthday.

:Tip-Hat: Welcome Denise D.

Greetings!!