Wanted to reply to your long and well thought out post. That was quite an interesting story of your own personal experience. Anything is possible. Sometimes the most unlikely root can be proven to be the cause of strange and unusual medical problems.
In my case, I have a long track record of weird neurological quirks and events, that date back a good 35-40 years. One of my problems, is that I never had a really good, sharp neuro doctor before, plus like all disciplines of medicine, much has developed and changed over the years.
Yes, I am on opioids, but only the past 3 1/2 years. Some of my issues preceed my use of painkillers for decades before. And for the record, I haven drank in over 40 years, not a drop.
Based on the consensus of opinion of all the doctors and specialists I have seen, my nerve damage is tied to the extreme radiation damage that I underwent in 2009. They are all in agreement with that, and more than one doctor, has commented, that they had never seen such severe damage before like I have.
My oncologist and the neurologist do not believe that my fairly recent use of pain medications has anything to do with what has been damaged, and why it is spreading through my body. Not saying its not possible. Just a lot of different circumstances and history between what you underwent and what I underwent.
Trauma, is also another suspect in this story. The trauma of undergoing two bad major radiation episodes in about
a 9 year period, and having a total of 14 operations during that time, combined, lead to a lot of possible trauma induced neurological outbreaks.
And in my case, based on the findings of a good orthopedic surgeon/doctor, and on the outcomes of a regular bone scan, full body PET/CT scan, and several sets of specialized MRI scans, there is no evidence of any "bone" problems, spinal issues, etc. Even at age 61, there's only a trace of minor arthritis that shows up on my knees, and its not enough to ever cause me any direct pain or problem.
It will be interesting what is discovered or found out. Was disappointed to read last night, that even with CRPS or ASL, that a "clear" MRI is not absolute proof to rule out either of them in a diagnosis. So part of me was thinking, what was the point of doing this scan? Yes, it could clearly show up some specific neurological problem brewing, but a clear scan alone, is not proof that one does not exist.
Still, I will go with the flow, and cooperate with any tests the new doctor orders, as he has convinced my oncologist, that he can get to the bottom of things.
Thanks for sharing your story, I found it fascinating and interesting. I wish you the best in your own medical journey, you have been through a lot yourself. As suggested by another poster, you might want to consider taking your story to the HW Chronic Pain forum. They got some good people there, and I think they would take great interest in what you post.
My best to you,
Post Edited (Purgatory) : 1/3/2014 8:13:01 PM (GMT-7)