I sent you a pm about the same time as your post. I realize it's late but I'll try again.
Alkymst

where you are coming from, I understand your indecision. I also respect your dealing with the pain. It can be soo unrelenting.
I guess wish I could DO something for you? I want to be a DonQuixote and get on my rickety Dulcinea and grab my spear and well, maybe go attack those stupid docs! HOW DARE THEY? And, you are not the only one here I wish I could be able to do that for! I mean, aren't docs kind of like windmills at times?
Just know that my heart, and mind are there for the asking. As much as I can give to help you thru it all. 's and more 's I just wish they were in person and just rite! - j

I moved just a year ago, for a lot of reasons, but, we downsized, moved to a location closer to family, near and extended, moved back to the small town where our kids were born and spent their childhoods for the most part, closer to my regional medical center.

Our new home is one third the size of our old home! Unfortunately it has steps which will have to be navigated, but, it is a trilevel, so they are not huge steps, but a pain in the butt....never the less, it has acreage, which for us was a quality of life issue. We had to shed a great deal of our belongings...fortunately most of it by the time we tossed it was junk, well loved and well used junk....some of it was harder to part with, and some of it is parked in a storage unit....but, we had to sort thru our lives...it is done. There are still some drawers and things, that I need to address, but in general, we are travelling pretty light, and a goodly amount of what fills my bins are memory items belonging to grown kids who as of yet, do not have kids to whom they want to show these things to...they will someday.

I have lost the desire to acquire.

Tony, I am so frustrated that you have had the experiences you have had. Not all of mine were good, and I know I had AN, PN for a decade prior to diagnosis and I know some of their treatment for my 'issues' were toxic to folks with hereditary PNs.

Back then it was 'in my head.' Had I not had an astute cardiologist, it would still be in my head. I hear what you are saying...you have had to manage ALL of your own care, and honestly, I think that is the way health care is becoming. I too, have done most of my own research and tactfully spoon fed it to docs....hoping they came to the right conclusion....only recently, have my docs come up with a few new insights I did not have, and these are ones that are 'interventional needs'....that said, several are all too willing to say, "This is how it is, see you in 6 months, you look great!"

I have had some luck with the docs providing adaptive devices...and I encourage you to look at some of the orthotics that cover the entire leg, some bracing options allow some PNers, especially those with CMT type problems to remain ambulatory.

The worst part is not having a definitive cause! I can accept a disease being untreatable, however, I am still digging for the cause...that seems somehow significant to me. It is hard to accept the consequences of a bad disease if that disease is really still a symptom with no explanation. I know that despite thousands spent on genetic testing, the gene loci may not be known, and then it is still a 'guess', as to whether it is genetic...we can only say, hmm....serveral of your family members have some similar problems.

And, it is important to stave off any additional bad effects of AN, which can not be done without pain medication. My days and nights bear a resemblance to yours, and I think they can be better with pain meds.

I have a high cholesterol, but, I am a genetic freak with a 'superior' VO2max. It means if my pain is controlled, technically, my heart can handle a huge load of exercise (despite a plethora of arrhythmias)....provided the neuro system keeps firing properly to prevent one of those garden variety arrhythmias from becoming an 'issue', and the distal parts of me like hands and legs below the knees manage to feel where they are in space, and move when I will them to and like you provided the pain doesn't down me totally after an hour or two. I have seen cases where having a strong heart, is a bad thing.

You do not even sound angry to me Tony...you sound calm, courageous and reasonable and not depressed nor depressing. Life with this disease is a daily challenge, but you're meeting it, and expressing that is it difficult, is in no way negative.

Keep looking in that mirror! What is looking back at you, is a hero.

This thread has had my emotions all over the place-so many
well spoken postings... I wish I could express myself half as well as those of you who have shared such elegant, kind, informative and thoughtful posts.

Tony, I am so unhappy to hear how much pain you are in. I am way behind on reading due to a combination of things going on here, a very ill mother-in-law, and a husband home for spring break... When your picture popped up on this thread, I was again reminded how much you resemble my husband (and MrsD's, if I recall). I was so hoping for better news when I saw that handsome face...

I am in hopes that one of the members who PM's you can come up with some better ideas on how to give you more effective pain relief. It is just appalling to me that you are suffering like you are with little or no constructive input from your physicians on pain management.

Pain management is not supposed to be giving you a pill and then one that is stronger, if things get tough. It is supposed to be managing pain in a manner dictated by the individual needs of each patient. This may require juggling several different medications alone, or in combination until you find a formula that works. It could require considerably stronger medications than you have previously taken.

Some pain management here is done by anesthesiologists, other pain clinics are run by pain management specialists. Is there any hope at all that you might have your pain better addressed by seeing someone like this, rather than your own doctor?

I know you previously mentioned being limited on who you can see, once you have been diagnosed with a chronic illness, but it breaks my heart to see you like this and even considering dark thoughts.

I have had PN for over 15 years. One of the best favors any doctor ever did for me was to put a little Lidocaine in my IV just before surgery. It felt like heaven, no pain... I believe there is a drug called Mexedil (?) that acts in a similar manner, but this has to be managed by someone who does pain management...

I wish I had the magic answer to make it all go away.

My thoughts are with you,
Cathie

I agree this post is very emotional. Tony I am so sorry. I don't have much to offer other then you have been in my thoughts. Your post has really made me think and I guess feel many emotions.I have had major problems with docs and adequate pain control. Staying in the moment is very hard for me and taking the day as it comes. I know many here or worse off so I know I should feel lucky.It is still hard though very hard.I never thought especially at my age I would face this though at any age it is horrible. Tony and others who have been through so much and have fought so hard really are so inspirational to me. Truly the impact you all have had on me is unreal and has helped me get through these times. Also I agree about saying how you feel. A feeling is a feeling and keeping them in eats at you. Always when I am upset my mom encourage me to have a good cry and you know in the end it makes me feel better. Many hugs to all.