Quote:
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.
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I have struggled to have my issue diagnosed and followed through as I believe it should be. Not sure if I am experiencing neuropathy, fibromyalgia?? Going on probably now about my 8th doctor to get some answers.......my situation btw (I know!) is a result from complications from Thoracic Outlet Surgery and complications following the initial surgery requiring 2 further surgeries, almost 4 years ago. Never had any of these current issues before.
You see a specialist who you believe is someone that will have answers, diagnosis, etc. and it is so frustrating when there is so little concern.....are they too proud to refer a person to someone that might have more knowledge?
So, yes we know our bodies & best to be our own advocate to find the the answers......we should not have to!
Hopefully, through my research I will have found the doctor who will listen, examine, diagnose & treat "me" as they, their friends or family would want to be treated.
chloecasey