Sorry for the delayed response. Very kind of you to respond. I have not been not feeling well and dealing with new symptoms. New symptoms can be nerve racking and bothersome and leave you with an unsure feeling of what the heck is going on now. My blood pressures have been dropping when upright, along with terrible lightheadedness. In addition, I have been nauseated for a couple months and finally got someone to do something once it progressed to vomiting over the weekend. I have not eaten since yesterday at 4pm and I still feel like food is caught in my esophagus and a rock is sitting in my upper abdomen. I am aware this could be progression of my autonomic neuropathy and gastroparesis. I got an order for some Zofran and Upper GI series this week. My own intuition tells me the AN is getting worse and redefining how it is going to wreck havoc on my body. I just pray and hope that even if I don’t have the best quality of life just keep me around so I be there with my wife of 10 years and help raise to the best of my ability our 2 year and 5 year old.

Jon: This past month I have tried very plain foods but I think low fiber, small frequent meals is coming my way soon. I have not researched or gone down the vitamin avenue but one area that I have been interested in investigating. Thanks for advice.

Baba222
I checked the website and it states that the health portion is no longer available. What could you do with other data from the genetic testing?

Suzanne C: Yes, I do believe there may be more than one process going on. When the obvious causes are ruled out over and over again..for me I struggle some days of wondering whether or not I even want to know the cause at this point. Especially, when you start getting into and investigating the rare of the rariest. There are disease processes out there that link SFN and autonomic neuropathy together. So, for me coming up empty is pretty depressing. No, my reflexes are abnormal. Absent in the ankle and patellar. Present only with reinforcement in the upper extremities.

Kitt: When I was at Boston University to rule out amyloid I brought them a family tree outlining what was the cause of my past relatives death. There is no link on any side going back three generations of anyone
with PN or PN like symptoms. I am going to mention CMT to my neuro again. Having gone to Mayo, Cleveland, Boston, and my home town is a major medical center destination why someone would not have thought of ruling this out. I don’t have the answer but curious to get an explanation.

Finally, I know this a large repository for PN information. Here is my 2 cents on sural nerve biopsies. On top of everything else, it is 3 weeks post-op sural nerve biopsy. I tried using my recumbent bike for 5 minutes and flared up the nerve pain in the outer portion of my foot that I had to stop immediately. I wake up every night with nerve pain that doesn’t even come close to the widespread paresthias. It is cold out where I live and I can’t even wear shoes because of the pain that I have to wear socks and flip-flops. What a direct hit I look like at times! I keep replaying in my head when my neuro told me that having this done will give us a lot of information that we don’t have. Then, I have it done and some of the small and medium fibers are thining, which we knew from the results of EMG. I gained nothing from the sural nerve biopsy. Just another expense since it is the beginning of the year and I have pay all my deductibles and co-insurances and the residual effect from the biopsy is one more problem that I can add to my list.

Be Well Everyone and if it is cold where you live...Stay warm,
Edward