Unfortunately, I'd have to agree with you on this for the most part with the exception of a few really exceptional neurologists that I've mostly heard about more than seen myself. Then again, my PCP where I lived previously was on the same level as some of my neurologists (once told me just to drink more soda to fix intestinal issues).
On a broader scope though, yesterday morning I read about a pilot who had to abort landing at 392 feet because he was texting and forgot to put down his landing gear. Then there are the insurance agents who pocket their clients' money instead of actually putting it on the policies the client is paying for. And the restaurant staff who didn't wash their hands and caused deaths by passing Hepatitis around. I won't even get started on the various levels of nursing staff most of us have encountered throughout our journeys. There are plenty of ***es in all fields and this gives me hope because I know there are great people in all of these fields as well. I've had to remind myself of this a WHOLE lot lately...
Where was I going with this.....??? Oh yeah... neurologists! Since there are so many less-than-amazing neuros out there, some very thoughtful MS patient started this site: http://www.msneuroratings.com/ Have you heard of it? It is full of recommendations - and warnings - from ms patients around the globe based on their personal experiences. I figure the more of us who join and share our experiences, the more useful the site will be to those who come after us as well. There's not much out in my direction, unfortunately, but maybe could be useful for you if you're thinking about finding a new neuro.
Dont forget that we live in Australia so we do things up side down lol
We dont have the MS numbers like the states do, the stats are something like AU 20,000+ and US 400,000+, are country is highly regarded for it research into MS but not for our on the ground neurologists. I think I read something recently that we have a shortage of medical 'specialists' so what we do have spread themselves into multiple fields and that could be why a lot of them are rusty old tools. I'd rather have a compitent GP than experience another neuro like the ones i was 'blessed' with seeing.
The first Neuro I saw, was just the 'first' name on the list at the local public hospital, he specialised in epilepsy. He was tool no 1 (lol) he told me I had unilateral ankle clonus and hyper reflex in the left and he witnessed the muscles spontaneously ripple (whilst laying down) and like a wiggling worm travel up my right leg which i'd never seen before but it had his attention lol he then scheduled my one and only 1.5T MRI of brain and spine no contrast, it was now 16 weeks after my big bang.
I'd been scheduled a follow up appt 8 weeks later, on a friday afternoon and with out looking at me, he said "i had a perfect brain" + "zero lesions" and before my butt even hit the seat he expected me to leave. He took exception to me holding up his golf game by asking a few questions and then steped within a few inches of my nose, and angrily told me off for having a friday afternoon appt and said I was never allowed to have an afternoon apptment ever again (wtf) He ended up telling me my cognitive issues was "probably senile demential" (um what i was in my mid 40's) and that my mobility issues "was probably psychological".
I giggled my head off as I puppet walked back to my car, I scheduled a psych assessment the next week (no mental health issues) and was quite shocked that he'd ordered a mini cognitive assessment and LP, despite what he'd said in his office. The hospital had to talk me into getting them done because i never wanted to set foot in that place again. Neither of which i can get copies of, bummer cause i know from what the neuro-psych said i've lost around 3 standard deviations and the areas i showed deficits are now becoming known MS areas of cognitive decline.
The second neuro I saw a year later was beyond worse, first clue was that it was a delapidaded converted house with a big sign saying dementia clinic lol though i should give him points for writing me a note so i could get my hands on the MRI scans and the reports so i found out that i did have lots of lesions in the white matter and deep white matter that was inconsistent to my age. lol zero lesions my a$$!
He asked basic questions, ignored the time line i'd made, asked about my mother (she has bipolar) and then proceded to ask me a thousand questions about mental health and even though i'd been assessed and had no medical history of ever having a mental health issue or even general common sx of, he only asked those kinds of questions, he didn't believe me, didn't believe DH and didn't believe my psych.
I wobbly puppet walked, fell over at his feet i didn't even realise i was going down until i was on my knees and almost kissing his shoes, fell backwards getting up (ouch), he set off the ancle clonus which then produced hard rippling muscle spasm up to my groin, gord that hurt and he wasn't happy about my leg doing that. He told me to stop doing it, as he repeatedly tested and tested getting the same dam result over and over and here I am feeling like i'm being tassered. He was obviously thinking i was doing it on purpose because he had me put my arms in the air whilst counting backwards by 2's, the old distract tactic. Funny how it kept on happening, i kept loosing count and couldn't keep my left arm up, lol i wonder why it kept happening oh maybe one of those holes in my brain has something to do with it. lol
Dumb statement 1 - Psycs dont always itentify psychological conditions
Dumb statement 2 - Sight issues have nothing to do with MS
Dumb statement 3 - IQ is only subjective
Dumb statement 4 - Contrast is unnessesary in dx MS
Dumb statement 5 - You walk like a girl i saw 30 years ago
I could go on but you'll no doubt have guessed by now that he was a very rusty old tool and didn't really know much about MS, i really believe he suspected mental health because of my mother having bipolar and nothing what so ever was going to sway him from that idea, least of all the truth or the clinical signs my body was giving out all over the place lol He said i was fine but still he wanted to send me for another MRI and other tests but seriousy in my head i was screaming at all he'd put me through and the totally false statements he'd been making, he could of found a tumor and i would not of trusted a word out of his mouth, so i ran.
Its been about 2 years and i've avoided having anything to do with neuro's ever since, I trust my GP 100% he's honest and up front with a great sense of humor and still i dont even see him unless i'm dragged there, he fully believes its MS lol at first he was MS or MND and i'm not going to even think about MND. Many will say i'm being stupid, maybe i am but my basic theory is that when 'i'm ready' it will be obvious. Lets face it, the damage is done and nothing will unring that bell anymore, lol and thats coming from a brain plasticity believer!
So after once again getting lost in the story lol (cant you tell i sooooo miss talking), i'm almost ready and trying to set up a 3T MRI and it will not be through a neuro, i want 'all' the evidence in my hot little hands before i step foot in a neuro's office and they will be fully researched prior! If i could skip the neuro part altogether I would do it in a heart beat.
PS i was going to delete it but thought maybe it will be of some interest to someone lol sorry its a novel :0)
I know it is frustrating I spend $400 copay on my insurance to basically have my MS Specialist monitor my progressive MS. I go in they do my reflexes .etc. WE talk about whether a DMD may work and decide it won't. He suggests MRIs, which I decline do to cost and I go on my merry way for another year. I go because I may need hime someday and I need the relationship.
I think Neurologists are good at what they do. They are just a different breed. For them time is much slower. They are not like Oncologists who diagnose most patients in days. Many Neurologists watch over time and that usually means six month intervals. The truth is the only real way to see MS is see the scars on the tissue on the brain or spinal cord. The way they have now is guesses from tests, history, and experience. We think medical science and tests have evolved more than they have and they have not. We are on the cusp of new testing but we are not there yet.
I wish I had understood the process better when I was going through it. I got angry at my Neurologists but now I have great respect for them. I see these same Neurologists giving there free time ( they do not have a lot of that here with heavy patient loads) to our local MS Society. They give talks and even raise money. One of my Neurologists is out running on Thanksgiving Day every year for the Society. These Doctors believe in what they do and they are not raking in the bucks like the Doctors reading the MRIs.
I see my MS Specialist and there is very little he can do for my progressive MS except monitor it. I know he is aware of the newest trends and if something that can help comes up he will try it.
I do think there is a need for a neurologist, and like Alex, see that many good things they do. This is not a get rich medical career because neurologists take their time with patients and don't push us through every ten minutes. The insurance companies only compensate them a pittance for this time, when you look at the costs of running an office, staffing, even the electric bill.
There are not many procedures that a neurologist who specializes in MS can perform to generate extra revenue. About the only extra things they do is an LP, and even that is relatively inexpensive. Even the IVSM treatments are done by another provider and not the neuro.
PCP's are responsible for so many things and they are not well compensated for their time, either. That's why there will be a shortage of GP's in the future for us. It takes a special person to become a doctor to treat people rather than to make money.
As for the 'need' for a neuro, they are able to focus solely on our MS, read the literature, stay up on treatment options, and make the appropriate referral for all of our other needs. My doctor on more than one ocassion has mentioned that he was not trained to do urology, or gastroenterology, or even cardiology. But he does understand the brain and the psychology of living with MS as well.
I will agree that there are definitely some neuros who are real A$$es, and if you have one of those, fire the doc and find someone else. I promise they aren't all that way.
Maybe it's just a problem in Australia then.
I even had a GP tell me once that neurologists are known in the rest of the medical world for being a/holes.
I'll admit my neuro is pleasant enough to talk to and he gives bad news with a nice smile on his face but he does nothing and communicates nothing. I didn't even know that what I had was called "spasming", "hypertonicity", "spasticity" etc. None of that was explained. My rehab doctor told me what I had wrong with me. I had to ask my neuro on three separate occasions on three separate days if I had had a siezure before he finally mumbled that I had generalized dystonia. I was left to Google that one because he didn't say anything else. He just walked out of my hospital room.
He seems to specialize in brutal pessimism. "without treatment you'll die a horrible death", "it's so bad this time you'll never recover function", "you will never improve enough to go home, you'll need to go to a nursing home". Etc, etc. I would prefer a little more communication than this type of pessimistic drivel.
I know another neurologist who has a good reputation and I used to work with him when he was a young intern, he was very friendly and easy to talk to then. The problem is, he is now a Professor of neurology and he specializes (pioneered) in deep brain stimulation for epilepsy and Parkinson's. I'm not sure that he would accept a referral for my problem. I suppose I can always try.
Like any specialist, their usefulness varies in direct proportion to their knowledge and skill. A good neuro is certainly preferable to a mediocre one but even the worst one can order a DMD while other docs or nurse specialists manage the disease.
The main problem I've seen from your recent posts TT is getting you and all your docs to work together as a team. I think I recognize it because it has a familiar look :( I sometimes wonder why I have to bring myself along for the appointment when the only thing that really matters is the labs, reports and recommended treatment protocols.
Guess it's another case of can't live with and can't live without.
This is why they call it a medical PRACTICE, The doc has to keep working until she or he gets it right! :-)
I have been to.... I'm going to be honest...FOURTEEN neurologists. I'm on the 9th whom I've seen more than once. I've been to the Mayo Clinic in Rochester, MN. The course of my symptom timeline has been complex. I do not have the 'classic' MS presentation. Does anyone?
Multiple sclerosis is one of those diseases that affects every sufferer completely differently. The symptoms correlate with the areas of demyelination of the brain. One area is affected in one patient, so they have weakness in the mouth. One lesion shows up in another area in the brain or spinal cord for someone else and they have urinary incontinence. Or vertigo. Or dysphagia.Or ataxia. Or the sensation of water running down one leg. Or clumsiness.
It's very tempting to dismiss neurologists as they dismiss us. I am the first one to hop on that train. Honestly, I struggle with my distrust in the medical community although I am surrounded by PHENOMENAL doctors and nurse practioners and nurses and a myriad of medical personnel at the top drawer hospital I work for.
One of the funniest and most pitiful jokes I ever heard was one of Stephen Wright's: Somewhere in the world is the WORST doctor.... and someone has an appointment with him tomorrow. Funny! And sadly true...
The thing I want to say is.... multiple sclerosis IS difficult to diagnose in some patients. Some patients meet all the MRI lesion criteria easily. In fact, I work with someone who has ALL the lesion criteria, meets all the other criteria, yet she has NOT ONE symptom. NOT ONE. She went in once for an MRI because of arthritis and they found many MS type lesions in her brain and cervical spinal cord. She, Mickey, went to the same neuro I did, Dr. L. He prescribed a DMD for her to stop not just the progression, but the appearance of her disease.
I, on the other hand, have just about EVERY symptom of MS and I respond VERY well to Solumedrol, but because I have no abnormal testing....Dr. L stopped treating me. He even stopped prescribing the high dose Solumedrol, which was my magic potion for recovery.
You know what? I can ALMOST understand: Interferons are very potent, expensive, toxic drugs. If a doc had to justify prescribing them to me for an insurance company, she or he would have a difficult time.
Am I happy with Dr. L? No; I think he is a lazy coward. Do I understand him? ......in an objective way, perhaps I do.
My newest neuro has suggested Dr. L and the neuros that came before him have fallen short of the goal. Dr. Q thinks that if you're stumped, you KEEP ON testing. That's why I like him! He wants to keep on with the process to get to the answer. Others have just... given up.
Hang in there. If you KNOW something is wrong with you, if your loved ones do, too....KEEP pressing. Eventually it will show. Find the medical professional who will take that journey with you.
I have been on that long, painful journey. It's not for sissies! I'm such a man, I have actuallly started to grow hair on my chest. .....All right, not really. But I am toughened by this whole process. I'm Momzilla, hear me roar. You can get through this, as well. If something is wrong with your body, who would know better than you? Persist.
I'm sailing right behind,
I love what you wrote MomZie but I think I have a funnier and pitiful-er joke.
What do you call the guy who graduates from medical school with the lowest GPA?
Do I win?