Hi everyone,

From personal experiences and from reading posts on NT in various forums, especially those that involve "nerves", it appears that diagnosing various neurological conditions is very difficult.

Many of us have been through doctor after doctor seeking help for chronic pain related to nerves. In many cases, it has taken years just to get a diagnosis, and then years more to find a treatment that works for us.

Many are still looking for a diagnosis. Many still looking for help to treat it once it has been diagnosed.

From another post I just read, it occurs to me that many times, we get conflicting diagnoses. Anything ranging from "We can't find anything wrong, we don't know what is wrong, it is all in your head, you need to see a psychologist or psychiatrist, you have "X" and then another doc says you do not have "x". You could have x, y, or z but we don't know.

Maybe doctors are just as baffled as we are about what is going on with our bodies. Are they just incompetent or can neurological conditions be that elusive and confusing to even the best of docs? Even the specialists.

What if we have been mis-diagnosed? What if we are being treated for the wrong neurological problem because it was mis-diagnosed. What are we to do if we get conflicting diagnosis from different doctors? Whom do we believe?

No wonder there is a site called "Neuro Talk".

I am amazed at the number of posts that mention the efforts just trying to get diagnosed properly. Until I found this site, I thought I was the only one that spent years just getting a diagnosis.

Getting a proper diagnosis is critical to getting proper treatment yet that can be a huge challenge. Then comes the next challenge of getting a treatment that will help with the chronic pain.

Ever get a weed in your lawn or garden but do not know the identity of the weed? You purchase weed killer and the weeds persist. Until the weed is properly identified and then the proper weed killer applied, the weed remains.

Well, not a great analogy but it is true. To get proper treatment, you need a proper diagnosis. Getting that diagnosis is not always easy.

For those that are still seeking a diagnosis, please do not give up. It may take many doctors and a lot of time but the quest is important.

Just my thoughts of the day. Thanks for reading my post.

Hi hopeless that is so true! I've been given several different diagnosis. It gets so confusing after a while that I wonder if I should even bother to see another doctor to try to find a cause. Each time so far they have all had different opinions.
By the way I like your analogy!
Hopeful

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

--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.

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.

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

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.

I have spent many hours thinking about this lately. Why don't doctors open practices that have doctors of all the related disease processes in one spot. I know they do at the big hospitals but not in regular practices.

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.

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.