Scared

[rcrosby]

I have had three clear EMG's and was diagnosed with essential tremor. When I brace myself with my arms they start to tremble right away.  Is this part of essential tremor or is this not consistent with this disease.
My muscles are stiff especially my neck what could be causing this . I am scared to death that I have some dreaded disease like ALS.

[mmarchid]

You don't have to fight with each other about the actual
purpose of the neurology specialists in this world, but I
agree that these kind of argumentations are part of a
process of dicovery for both parties. I will make my point
below.
I agree with 'ontherecord' that sometimes (or most of the time?)there is not much to be done once you are diagnosed with a
neurological disease. Some of them appear to be caused by
viral infections, vascular problems, etc which are so far
intractable domains in medicine, same as other professions
(such as computer science) have their own intractable issues.
For example, in Computer Science there are problems that you
cannot even prove if they are intractable or not.
Same thing with viral vaccines or if people born without
(certain) arteries could be helped sometime in the future.
Does anybody knows if an HIV vaccine will ever be developed?
Probably not, but people and doctors hope so.
In my case, I am developing polyneuropathy due to congenital
vascular abnormalities. They can't do anything about it, and
most doctors won't tell you anything so that the real explanation
which is known by the medical community would not scare the
public opinion. Every individual will experience its own share
of (sometimes not bearable) symptoms when the time is due
without knowing why this is happening.
That doesn't mean that medical research pursued without being published (I would call it "underground") is not performed
silently. Usually, the phrases "I don't know" or "the results
are normal" despite your symptoms or "The cause of this
problem is unknown" that you see sometimes in the medical
journals and popular literature doesn't mean that they don't
know the cause. It's just that they cannot do much about it
and when you hear those phrases from a reputable doctor, you
have to be really concerned about your health.
But now that nerves, tissue and vessels can be regenerated
there is hope that in the future some of the neurological diseases could be cured.
The problem with Neurology is that until that time comes, it
will mostly be a palliative domain of medicine, because the
other fields (Infectious Disease, Vascular Medicine, etc) responsible for the real causes of the neurologic
symptoms failed to stabilize (aka cure) the patient. When that acknowledgement happens, they will just take their hands of the
patient and the neurologist will start doing his palliative job.
And here I agree with 'ontherecord': if you do not go after the
cure, the downward spiral of the patient's health cannot be
stopped.

The conclusion is that they can't do much, but it is not their
fault for dealing with patients that cannot be helped more than
that. The diet and lifestyle are barely important. It's just
that they got born.

[ontherecord]

Could you please email me directly if you get a chance?  I would really like to talk to you further about some health conditions that I am very interested in, and that I am confident you are familiar with over your 20+ years of practice.

My email address is: ***@****

If you get the chance, please do email me.

[ontherecord]

I am glad I caught your post, and I would like to thank you for sharing the information and clarifying some of the issues.  I think most on this board would benefit from your experience and expertise through more comments on this board, provided you have the time.

[papamd]

Dear ontherecord,
I am not sure if you will ever read this, but I feel obliged to offer some information.  I am a residency trained, board certified emergency medicine physician and an old timer.  Iwork at a level 1 center and train EM residents.  I agree with you that strokes (CVAs) are emergent.  EM departments all across the U.S. are setting up "stroke centers", and are treating CVAs just like heart attacks.  This includes calling a "stroke code" which automatically notifies the neurologist and the neuroradiologist on call. Even though we (ED physicians) are the first to evaluate and stabilize the stroke patient, it is the neurologist who decides if the patient is a candidiate for thrombolitic therapy (clot busting medication), after evaluating the patient and reviewing the CT scan.  I have been practicing for over 20 years and have seen many changes.  I,for one, appreciate the help of the neurologist and feel patients get better care with the input of the neurologist.  They are just better at evaluating stroke paients, it is there specialty.  As for everything else, I appreciate educated patients, and encourage self education from any source possible.  I do have to agree with the other person that you can't always believe what you read, even if it is in one of the journals you quote. Statistics can be manipulated to prove just about anything.  There is even conflicting research on the use of thrombolytics for CVAs.  No consensus that I am aware. I came across this web site because I am doing research for a friend.  I apologize to the person who initally posted the site for using this page for personal voicing.

[ontherecord]

A friend of mine is a third-year ER resident at a Level II hospital and strokes are by definition "emergent."  And strokes are quite common too; therefore, ER residents and attendings have to deal with stroke victims -- real time -- that is, when they're actually having a stroke.  I have another friend who is a resident physician in neurology, and often, he deals with people who have suffered a stroke, after the fact.  Neurologists deal with stroke rehabilitation and assessment after the fact, not real time.  As for patients with traumatic brain injury, again, if there is any damage to the brain that warrants surgery, neurosurgeons (not to be mistaken with neurologists) operate after the ER doctors determine (via CT) that an operation is necessary.  In both situations, neurologists remain out of the picture, at least in most situations.


As for literature, I know exactly where to turn.  I read reputable sources, like reports published by JAMA and the Institute of Medicine, as well as the New England Journal of Medicine.  Books like the Merck Manual are very reliable as well. Publications by the American Academy of Neurology are reliable as well.  You don't need formal medical training to know where to look, so I disagree with you.  

Furthermore, MRI's and CT's are the bread and butter of neurologists, at least in part.  The neurological exam is telling, but more often than not, to officially diagnose or rule out a condition, neurologists OFTEN turn to brain imaging, whether it be an MRI or a CT, or PET scan or a number of other imaging techniques.  Just look at some of the responses to most the questions posted here.  It's mainly about tests.  Yes, neurologists interpret the tests, but that's not that difficult.

You also seem to believe (or at least imply) that only those with a formal training in medicine are able to understand medical literature and medical conditions in the big picture.  I have to disagree with that, given the large number of incompetent doctors parading around, of which you may or may not become a part of.  For someone with a formal training in medicine, you really haven't told me anything I don't already know.....  

Finally, yes, the individualized approach is gaining ground, in large part because people aren't that amenable to taking a back seat approach in their own health care anymore, given the wealth of information available to patients.  Not too long ago, before the internet revolution, doctors maintained their superiority because we didn't have all this information available to us.  Now that we do, doctors get threatened when they deal with informed patients who don't want the runaround anymore.  In any event, there is no point in belaboring this any further, so this is where I part company with you.......

[cdnmedstudent]

I fail to see how you have "disproven" me by your most recent comments since you do nothing but refer to an earlier rant as proof of its own legitimacy.  Unlike you, I used facts and experience instead of opinions to justify what I said, and your ramble proved nothing.  If you could tell me where your expertise comes from regarding the operating procedures in emergency departments, I'd like to know.  For example, your claim that neurlogists aren't called, they are not consulted in emergency situations - what was that based on?  You didn't provide me with any sort of reasoning other than "no they aren't and that's the end of that."

I never said that reading the literature is wrong, I was trying to imply that you have to be discerning with what you read, and know how to properly interpret information.  The source of the information is key as there is an abundance of misinformation available to lay people.  Just because a study has been published doesn't mean that the results are automatically fact and should be used without question.  Studies are published all the time that contradict each other, the results of which never come into clinical practice.  You may find that textbooks are contradictory, depending on the different authors.  Furthermore, neuroscience or neurophysiology textbooks lack the clinical focus and judgement that practicing physicians use daily - something a person obviously can't get just by reading.  I believe there is a huge difference between someone like you quoting literature versus a neurologist quoting literature, who as you pointed out has a lot more experience and skill in interpreting information.

As for individualizing treatment, I believe it is the cornerstone of "patient-centered" care.  I challenge you to find me two individuals who have suffered from traumatic brain injuries who display the exact same set of characteristics and challenges.  I expect that the management of each individual, no matter what condition they have, must depend on his or her own goals, what he or she wanst or do not want done to their bodies and minds, as well as what his or her practicing physician thinks would be of benefit.  There's a little thing called informed consent and physicians are now being taught away from a paternalistic method of practice.  Simply becuase there is an established method of approaching a problem doesn't mean that is what you do in every case or that it will work in every case.  Patients aren't black boxes that you simply throw "cures" at and hope for the best.  Medicine is constantly evolving and previously accepted treatments are improved upon daily - which doesn't always mean finding a "cure".  I suppose that your lack of clinical experience in this regard accounts for your opinions.

Your argument that billions of dollars are spent every day in an attempt at finding cures is true, but only because pharmaceutical companies and society in general would love it if curing disease was as simple as taking a pill.  Wouldn't that be easier?  In reality, however, this is rarely the case and instead of curing disease we simply manage the symptoms without treating the underlying cause.  For lifestyle-related conditions, its much easier to take a pill than to exercise, eat better, or stop smoking, isn't it?  But nobody wants to hear that - quick fixes are all the hype these days.

I find it amusing that you assumed that I am going to become a neurologist, because I never in fact said that.  I simply wrote that I will one day be a colleague of neurologists and physicians in general.  My comments were actually meant for other readers of this website who might otherwise be inclined to give too much weight to your comments without the benefit of knowing where you get your opinions.  As another example, the supposed fact that "CTs and MRIs are the bread and butter of neurologists" shows that you truly don't understand what neurology is all about.  

As for my "lack of resolve," I don't know what you're refering to exactly.  Do you mean to say that since I didn't post a response to your comments immediately that I therefore have "no follow-up?"  Unfortunately my chosen profession - and I am very happy with it, thank you - doesn't leave me much time for such things.  I'm far busier learning about how to take care of people, rather than defending why or how I do so.

[ontherecord]

Buddy,

You talk a very good game, but it's clear and convincing that you have absolutely no follow-up.   Very disappointing.  Given your lack of resolve, it wouldn't surprise me if you do absolutely nothing for your future patients.  Frankly, I pity any man or woman under your care.

[ontherecord]

By the way, let me ask you a couple of questions because I would like to know whether your own experience/study/and possible clinical experience as a soon-to-be-neurologist provides you with a perspective that is not available to me.

First, can long-term benzodiazepine use (Xanax, Valium, etc.) cause brain atrophy -- shrinkage of the brain -- similar to the atrophy caused by long-term alcohol consumption? And if there is a correlation, is it dose-dependent? (If you have seen brain scans of people who have used benzos long-term, you're one up on me; if you haven't, I'd STILL like to know your opinion based on what you studied/were taught about the brain.  And if you don't know for sure, give me your best guess....something that I, who is not a neurologist, could not figure out for myself.....

Second, let's say a patient of yours sustains a head injury.  Let us say further that by any definition, whether you're going by the American Academy of Neurology guidelines or the American College of Sports Medicine guidelines, that this head injury was "mild" by those definitions and any others you are familiar with.  Let us also say that there was no loss of consciousness and no post-traumatic amnesia.   1. Would you order a CT? 2. If the CT shows no structual damage, how would you handle a patient who has persistent cognitive impairment (slowed information processing, difficulty multitasking, organizing, planning, etc.) AND disturbance in emotional affect? What would your diagnosis be for someone who sustains this mild head injury but has persistent cognitive sequelae? And how would you manage this patient?

Let me ask you another question that explores it further...
Would you say that brain injury as we know it is possible at the microscopic level (as compared to the structural level) in the absence of clear showings on imaging?  Now this is exactly the type of question that I would readily acknowledge wherein clinical experience is important, and as a soon-to-be-neurologist, I would like to know your thoughts (outside of the literature of course).

And finally, I'd like to know your thoughts on another matter not fully understood in neurological circles.  Alcohol consumption is the cornerstone of virtually all social activity in almost every developed nation.   Almost every social activity involves alcohol, which helps to explain why 1 in every 14 adults is an alcoholic in the U.S.  The big question is this: outside of Wernicke-Korsakoff syndrome, how much alchol over what period of time causes brain atrophy significant enough to impair cognitive impairment?

Now, all three issues I presented for you are not clearly addressed by the "literature" and this is where clinical experience comes into play.  If you can shed any light on these issues that I cannot figure out for myself, then I rescind all statements I made in the prior comment and will acknowledge that neurology is more than just about "curing."

Looking forward to your response.

[ontherecord]

First, each and every argument you make is both logically flawed and egregiously unconvincing, and I'll tell you why in just a second.  

Second, I do have the right to CRITICIZE and SUGGEST that neurologists can't treat a pletora of neurological conditions, because that is a FACT (see above for the abundant number of conditions that neurologists can do absolutely nothing about -- it's indisputable evidence).  

Third, here in the U.S., Emergency Medicine doctors handle strokes, almost entirely -- no one calls the neurology resident/attending, and the ER docs know EXACTLY how to manage strokes (speaking of which, I have quite a bit of respect for ER doctors).  So neurologists are not, in fact, called to implement life-saving measures for stroke victims real time.

Fourth, whether or not my knowledge is derived from the literature (repuatable journals, textbooks, and medical studies) is IRRELEVANT because in response to a question that I posted, the CCF Neuro M.D. responded by citing EXACTLY to medical literature.  The doctor presumably has at least a decade of CLINICAL experience with REAL patients, and the best I could get was an evasive answer that alludes to literature that is readily available and understandable to a person of average intelligence.  So don't knock my supposed reliance on literature, since that's exactly what the neurologist here relied on, despite presumable extensive clinical experience.  And you know what? That just underscores my point about how little neurologists know OUTSIDE of the literature.  I could read the same stuff about how statins (such as Lipitor and Zocor) may be beneficial against Alzheimer's disease, how one drink a day protects against dementia but 2 or more increases brain strophy, about the differences in prognosis between a contusion and a concussions and whether a concussion is a grade 1, 2, or 3.  I could read the same stuff any neurologist can, and when I ask a neurologist about the issue I just read about, my own neurologist will just reiterate to me what I just read.  Same information pal.  

Fifth,  if each patient was unique, as you say, then common protocols establishing standard treatment for any particular condition would be nonexistent.  Patterns emerge and clinical experience supports these patterns amongst a wide range of people, so you're incorrect once again. There are accepted ways to treat any particular condition, and once again, a person of average intelligence could arrive at a correct diagnosis and design a course of treatment.  To deviate from accepted standards of diagnosis and treatment is akin to malpractice so a neurologist's clinical experience is useful insofar as it helps them correctly diagnose a condition, but again, a person of average intelligence could open up a neurology textbook and correctly diagnose most conditions, especially because CT and MRI scans (and RADIOLOGISTS' interpretations of them) pretty much are the bread and butter and make the neurologist's job pretty easy.  

Sixth, no, there is not "much more" to treating illness than establishing a cure.  Incorrect once again.  Billions of dollars are invested each year to find cures for various illnesses.  That's the bottom line.

So, if it makes you feel better about your chosen profession -- pretty much establishing the correct diagnosis but 9 times out of 10 being unable to do anything about it, congratulations.  You found your calling.  Have a nice life.

And if you're going to call me out again, make sure you bring up some better, more logical, and most importantly -- more cogent points.  Discrediting you was just too easy.

[cdnmedstudent]

Sorry rcrosby, the comment that I am about to post is not relevant to your health problem, but I felt I had to say something given the posting from ontherecord that I read on your page.  As for your illness, I wish you the best of luck.

ontherecord, I found it interesting to read your diatribe about neurologists and their apparent lack of ability to "treat" or "cure" disease.  From this comment - and the many others of yours that I have read on this website - you portray yourself as someone who has a lot of knowledge on the subject of neurology, but it sounds like much of your information comes from textbooks and what you read online.  I'm curious as to the basis for your comments - have you had bad dealings with neurologists and that's why you're bitter towards them?  Until you go through the extensive training that these individuals complete I don't think you have a right to critize or even suggest that they have no clue as to what's going on or can't treat any disease.  There's a lot more to treating illness than establishing a "cure."

To use one of your examples, neurologists can do a tremendous amount for patients who suffer from strokes. They will be the ones called to the emergency room when it is suspected that a patient is having a stroke, the ones asked to identify what is going on so that potentially life-saving treatment can be initiated early, the ones who determine what that treatment is (and there is a lot that can be done), and the ones asked to direct the recovery process.  While they may not be able to reverse the condition, they can help teach people how to actively cope with neurological deficits on the long and difficult road to regaining function.

One sentence I found particulary funny was when you said, and I quote, "As a matter of fact, even radiologists can read MRI's better than most neurologists."  Given that radiologists spend 6 years of residency training learning how to examine and interpret Xrays, CTs, MRIs, etc. its not surprising that they can do it better than other physicians.  That's their speciality!

After reading your series of communications with a woman in the UK who is worried about PD, I would like offer a new point of view on GP methods of practice.  Perhaps people the US have a hard time convincing GPs to refer them to specialists or to do extensive tests because these GPs are restricted by the HMOs they work for as to what they can or cannot do for each patient in a given year (like how much they are allowed to spend on each patient in 12 months).  There are incentives for "good behaviour" and punishments for "bad behaviour" within such systems.  I know this isn't the case across the whole country, but I think it is important to think of the various external pressures that physicians are under, which patients don't get a chance to see when they walk into the examining room.  I also believe that the US system is at the core driven by profit and not a concern for patient health.  In a country where over 40 million people are without health insurance and cannot afford basic medical treatments, even the best doctors may find themselves restricted.

I must say that what I find most disturbing is your tendency to talk like you are an expert the subjects (like prescription medicines and diagnostic workups) that you comment on.  Simply reading the Merck Manual, journal articles, or textbooks doesn't make a person knowledgeable on an illness or how to treat it. You have to know which are the right materials to read (don't believe everything you see on the internet), and how to interpret these materials in light of experience and training. Each patient is unique, and what works for one person may not be useful for another.  

If you have some form of medical training, and I have offended you, then I do apologize for my statements.  I must apologize to other readers of this site for this long response and my need to comment, but as someone in the medical field who will someday soon be a colleague of the people slandered above, I felt I had to do something after I read ontherecord's statements.  I know this forum is for addressing patient concerns, but I think the first step in that regard is to learn to work with doctors and not against them.

[rcrosby]

Thank you for your reply. Some of my symptons are that I feel myself swaying back and fourth when standing in one position. Also I seem to be very week in my legs and my arms feel heavy.
Do not have the energy that I once had , walikng up a flight of stiars really gets me winded. I have gain about thirty pounds which may explain the difficulty in walikng the stairs. But the other things are very bothersome.

[rcrosby]

I just need to know about the tremors in my arm when bracing myself.  Also, I feel like I am swaying back and fourth when standing. What do you think Could be causing this  ?
I aggree with your comment about the fears of a neurological disease. I think over the past couple of years these diseases have been publicized more in the mainstream media. Raising the fears of people over forty.
Neurologists do have a thankless job, but it is a proffesion they chose. I am sure they were well aware of the types of dreaded diseases they would be dealing with on a day to day basis.

[CCF-Neuro-M.D.-CS]

Essential tremor is brought out by activity. Therefore, pushing or pulling on a object may cause a tremor. You have not given me other details to discuss the possibility of ALS, however if three EMGs were normal, then it is less likely. Essential tremor is a movement disorder which can occasionally occur with other movement disorders. What I would recommend is for you to see a movement disorder specialist for a second opinion and treatment plan. Good luck

[ontherecord]

Studies have shown that the number 1 thing people fear most is cancer.  And the second thing people fear most as patients is blindness.  But there is a lot of concern and fear here about various neurological illnesses, like ALS.  I was looking through the Merck Manual today and it made me wonder what the job of the neurologist in modern medicine today even is.  I've come to the unfortunate conclusion that the province of the neurologist is to primarily "diagnose and manage" -- as compared to "treat" -- like most other doctors do.   There are so many neurological conditions for which neurologists can't do anything about.  For instance, if someone has ALS, that's pretty much it in 5 years -- no cure.  Same goes for Huntington's disease, and CJD (or vCJD -- no cure; it's just a matter of time until the person afflicted dies.  There is no cure for Alzheimer's (the best a neurologist can do is prescribe Aricept or some derivative, which may just slow down the cognitive decline).  There's no cure for vasuclar dementia (aka multi-infarct dementia), the two most common forms of dementia.  There's not much neurologists can do to help patients after a stroke.  Not much they can do for people with primary-progressive MS (besides prescribe beta-interferon).  Not much neurologists can do to manage head injuries of any sort.  The emergent ones are handled by neurosurgeons and the nonemergent ones are handled by internists or ER doctors.  There's not much neurologists can do to treat cerebellar degeneration, korsakoff's syndrome, freidrich's ataxia, or any progressive degeneration of the brainstem.  Not much they can do for people with advanced brain atrophy, or for people any of a plethora of other neurological conditions.  As a matter of fact, even radiologists can read MRI's better than most neurologists.  With all due respect to neurologists, I really wonder what and how they contribute to the well being of their patients, given that the overwhelming number of conditions they rountinely see are untreatable.  In just about every neurological text that I've read, the most important thing is to arrive at the correct diagnosis.  I guess so, because it's clear that there's not much they can do about the actual underlying condition.  This is ironic, because the hub -- the control center -- of our very beings -- is our brain -- and when something goes wrong, unlike most other medical specialties, neurologists can't much help (neurosurgeons can however).  Very interesting indeed, and a revelation that deserves more attention.  If more people knew about the insidiousness of some of the aforementioned neurological conditions, I think they would fear CJD, Huntington's, ALS, and Dementia (primarily Alzheimer's) a LOT more than they fear cancer or blindness.  If anyone here has ever seen the end-stages of some of these illnesses, I think they'd be agree.

I think the most important lesson neurology residents learn in their 4 years of post-medical training is how to break the bad news as gently as possibly to people suffering from neurological afflictions.