I am a 33 year old single and available Caucasian female, with several medical problems. One in particular, that had stumped many neurologists for years, was finally diagnosed at the of July 2009.  It is call hereditary neuropathy pressure palsies.  Have you heard of this?  It was my 3^rd diagnosis. It began early October 2006. 

Now I have practically now sensory feeling in approximately 80% of my body.  I cannot tell the difference in temperatures, it is difficult to do some everyday ordinary tasks, I have learned how to make accommodations for things I used to be able to do without any thought.

Life is a lot different for me know, I have more medicines I take, so which have made ma gain over 100 pounds.  That I think really is the worst part.  The extra weight plays a big part in my day to day pain and makes things like taking a shower more difficult than ever before.  It is very hard, even painful to try and put a bra on.  Finger dexterity is so bad I cannot really have clothes with zippers or buttons anymore.  My boyfriend broke up with me, my friends have abanded me, and I was dependent on the help of my parents, so I moved back in with them.

I was adopted, so there was no way to know that this was coming, although I have been blessed to meet my birth mother.  Once I found out it was hereditary the doctors wanted to know if it ran in the family, and to what severity.  There is no signs of it on birth mom’s blood line , and y biological father wants nothing to with me so unless I prove through a DNA test that he indeed is my father he refuses to release any medical records.  We are pretty sure it came from his side, although it is just a theory, knowing what not help me any, but rather, give his family, especially his young son the knowledge and awareness of this disease.

There is no cure for this neuropathy.  It does not get better, it progresses, and unless you stay active and keep a positive attitude, it could control rather you control it.  For now I am in control, and my doctors are allowing the progression down some through medicines.  Unfortunately they just keep putting more weight on me. 

How can I get back to being 150 pounds and have it covered by insurance? Can ?  I eat well, exercise when I can , I go to the YMCA, I have personal trainer I just cannot shed to pounds.  My meals consist mainly of fruits more fruits vegetable, and serving of meat.  Once a week I’ll splurge, ice cream sundae, or candy bar, bag of popcorn, just to kick the sweet craving.

Can you help me?

Lisa Schmitz