Originally Posted by Breia Lee

For instance, it is well known that that symptoms caused by compression of the spine or nerve roots can exactly mimic those caused by more systemic, body-wide causes. But most experts on spinal conditions--neurosurgeons and orthopedic spine surgeons--are not well-versed in systemic causes of neuropathy beyond diabetes (they certainly don't tend to be knowledgeable about possible autoimmune, toxic, or nutritional causes). And neuromuscular specialists may have gaps in their knowledge about peculiar compressive presentations, such as those in thoracic outlet syndrome or meralgia parasthetica.

The more you go to doctors, the more you realize the gaps in their knowledge--by that I mean, they don't know what they don't know, although most would have you believe they know everything.

Unfortunately, what that means for we their patients is that they only focus on what they understand and are well-versed in, which unfortunately doesn't cover the full extent of our pain and suffering.

That's why it's even more important for us to be educated in our own conditions, as much as we are possibly able, though it is oftentimes difficult because of the limitations imposed upon us by our disease(s). We are our own best experts, as well as our own best advocates.

Originally Posted by glenntaj

--is the tremendous specialization in modern medicine. Finding the right expert in one's potential conditions is tough under the best of circumstances, but with neurology, subspecialties abound.

For instance, it is well known that that symptoms caused by compression of the spine or nerve roots can exactly mimic those caused by more systemic, body-wide causes. But most experts on spinal conditions--neurosurgeons and orthopedic spine surgeons--are not well-versed in systemic causes of neuropathy beyond diabetes (they certainly don't tend to be knowledgeable about possible autoimmune, toxic, or nutritional causes). And neuromuscular specialists may have gaps in their knowledge about peculiar compressive presentations, such as those in thoracic outlet syndrome or meralgia parasthetica.

And I'm not even talking about the neurologists who don't come into this realm at all, but deal with things like stroke or epilepsy or multiple sclerosis. If one is not in a major urban/research medical area, often the supply of neurologists who have a clue is very limited (or nonexistent).

It's why, in the end, if one is truly committed to pursuing a diagnosis, it likely behooves one to attempt a consultation at a specialty center (i.e., Columbia Presbyterian/Cornell-Weill, Massachusetts General, Johns Hopkins, Mayo/Cleveland Clinics, Jacksonville Shands, Jack Miller Center, Washington University/St. Louis) that not only has major research into neuropathy but also can access experts in other neurological, and, indeed, all specialties.