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#1 | ||
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Member
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By the way I like your analogy! Hopeful |
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"Thanks for this!" says: |
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#2 | ||
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Member
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So true....getting the proper diagnosis is key. Basing a treatment plan on the wrong thing will not be effective and can be dangerous. Here's an article by NBC on this.
http://www.nbcnews.com/health/health...on-year-n82256 |
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"Thanks for this!" says: | chloecasey (06-18-2014), Hopeless (06-18-2014) |
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#3 | ||
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Magnate
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--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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"Thanks for this!" says: | echoes long ago (06-18-2014), en bloc (06-18-2014), hopeful (06-19-2014), Hopeless (06-18-2014), Idiopathic PN (06-24-2014), mrsD (06-18-2014), v5118lKftfk (06-29-2014) |
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#4 | ||
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Senior Member
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Dear Glenn,
You said it so much better. Thanks for explaining what I was attempting to say. Thanks for your well versed explanation of why neurological conditions are so difficult to get properly diagnosed and why there are so many conflicting opinions by doctors. |
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"Thanks for this!" says: |
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#5 | ||
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Junior Member
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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 |
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"Thanks for this!" says: | hopeful (06-19-2014) |
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#6 | ||
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Junior Member
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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. ![]() |
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"Thanks for this!" says: |
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#7 | ||
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Member
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Personally, I believe most doctors today want to specialize in something because they make soooo much more money. Due to this fact they only know what they specialize in. They can't remember all the things they learn in medical school, residency etc. no one could. I believe they use to have diagnosticians. I've looked high and low and can't find one. I went to John Hopkins and they had no definitive answers either. Maybe this or maybe that. Actually they disagreed with my neuro dx of SFN. There is no doubt in my head I do have SFN. I have every symptom. I tried to get in NIH and they won't see me because my neuro did a biopsy and his lab said SFN. They said I already have a diagnosis and if I develop any more symptoms apply again. My neuro told me they have an MRI there that is more definitive than the other hospitals. He said he couldn't figure out what's was wrong with one of his patients. He sent her there and she was dx'd with MS. Apparently, their MRI picked up a lesion that could not be seen on her previous MRIs. It was deeper in the brain. |
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#8 | ||
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Junior Member
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Personally, I believe most doctors today want to specialize in something because they make soooo much more money. Due to this fact they only know what they specialize in. They can't remember all the things they learn in medical school, residency etc. no one could.
I totally agree. They also aren't motivated to keep their knowledge up-to-date--that's why sometimes the patient is more knowledgeable than the physician regarding new treatments or pertinent information regarding his/her ailment--we do the research. I definitely think there is a great need for diagnosticians. Most physicians don't look beyond your stated cause for your visit--that's exactly how my lyme went undiagnosed for 36 years. It never occurred to me that I HAD lyme, so I never mentioned it. Diagnosis would have been simple, but none of the umpteen doctors I've visited over the years ever asked me the single most important question, "Have you ever been bitten by a tick?" One blood test would have changed the course of my life for the better. I like to think a diagnostician would have caught it immediately, given the extent of my symptoms. |
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