Author Topic: "We don't diagnose, we only treat" neurologists  (Read 3272 times)

lolo1979

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"We don't diagnose, we only treat" neurologists
« on: March 19, 2013, 11:43:53 AM »
I want to scream.  I am having the common neuropathy symptoms many of us do.  Pins and needles. Muscle weakness. Thumb tremors.  I saw a neurologist back when all this first started, which was right after I had my second baby.  By then, though, I had already been started on steroids for a few weeks, and the symptoms were resolving.

Of course, I got the basic testing - an EMG.  Those findings were normal, and since I could walk and didn't appear to have anything immediately wrong with me, I was sent on my way.

I then went back to the same neurologist when the thumb tremor started. He dismissed it as "benign and harmless" in less than 5 minutes, literally. Did NO further testing, nothing. 

So my neuro symptoms are flaring again, and I need to get a neurologist worth a darn.  I did some searching and found one that was highly recommended.  Called his office to get an appointment, and got treated like some sort of idiot.  The lady asked if I had seen my primary for these symptoms.  I told her I had not, because neurological issues are not his specialty, and that my rheumatologist recommended I see a neuro - particularly since we both know the symptoms are being caused by my autoimmune issues.

The lady then said that they would only see me to "treat", and not to diagnose.  I said "well how can you treat me without a diagnosis?" She said my primary needs to diagnose me.  That is seriously the most offensive, assanine thing I have ever heard in my life. I don't think my primary has enough knowledge, equipment, etc to properly diagnose what's going on with me. 

Ugh. I am just disgusted with the lack of quality healthcare professionals in our country.  It is next to impossible to find a GOOD doctor in any specialty.  I mean I have never heard of such a thing in my life  --- you only TREAT but don't diagnose?!   STUPID!

ARRGGHHH!!!!!!

anabanana

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Re: "We don't diagnose, we only treat" neurologists
« Reply #1 on: March 19, 2013, 12:13:39 PM »
I am screaming with you lolo...
I understand what you're going through...

I had the same thing happen yesterday with a different specialist...

I wanted to get evaluated by an endocrinologist, to get my hormones evaluated completely,  so I found one and called to make appointment...

Later that day, I was informed that the Endo wanted a referral from my primary or rheumy, with a diagnosis, for the appointment.

I told them I don't need a referral, I have a PPO. And, that there is no diagnosis yet, other than my cortisol being borderline high and vaginal dryness, and the rheumy suspects autoimmune disease even with normal Rheum labs. Seems that would be enough to get a work up going in endocrinology.  Their office said, well we need tests run by your primary before we can see you: I told them, well, the tests I need, the primary nor my rheumy will run them, because it is not in their specialty..my doctors told me that I should see an Endo if I want these tests run...

I cannot believe they would refuse a sick person a consult and not run some extra labs, it's not like they aren't getting paid for it...I mean, it's not like I have an HMO, I have a PPO for a reason...

If all doctors taking the PPO insurance required referrals, that would be called an HMO..

And, if I had to get a referral from my primary to see my current Rheumy, then I would still not be seeing my Rheumy...
Because when I first knew something was wrong, I actually asked my Primary to refer me to Rheumatology, and she refused...this was before I realized that a PPO can self refer to specialists, and that is how often I used my health insurance that I didn't even know this.

So, if no one refers you or you don't already have a diagnosis that requires an expert to diagnose you, does this mean you should not be allowed a consult with a specialist, a second or fourth opinion,
that is complete BS...
So I understand...it is extremely disgusting...
The drs are just getting lazier, and padding their bank account...
Wow, so they want someone else to diagnose, so it makes their job easier...
« Last Edit: March 19, 2013, 12:17:57 PM by anabanana »
Focal lymphocytic sialadenitis less than 1 focus, Dry everything, Neuro symptoms, Muscle weakness, Fasciclations, High inflammatory CRP,Tremor,Balance issues,Dizziness.
Take vit-D3, fish omegas, calcium, magnesium w/B6, B12, Restasis, Systane Drops, Seronegative

LisaMarie

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Re: "We don't diagnose, we only treat" neurologists
« Reply #2 on: March 19, 2013, 12:22:16 PM »
Are your specialists all in the same "group?"  Like here, we have the Geisinger Medical or Hershey Medical groups.  My primary is in Geisinger and I pretty much keep to their group for all of my specialty visits...but for my gyn.  I never have an issue with anyone.  I barely see my primary.  He doesn't know much about sjogren's and he is fine with anything my Rheumy says.  If the Rheumy wants to refer me, he can.  It all goes into one computer system and they all have access to it.  I even have limited access to my records online.  I can communicate with any doctor that I've seen as well via their message system.

Anyway, if you can find a network like that it makes it easier.  Sorry you have had such a bad time.
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lolo1979

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Re: "We don't diagnose, we only treat" neurologists
« Reply #3 on: March 19, 2013, 12:24:10 PM »
YES!!! You DO feel my pain!  I have a PPO too, very good insurance actually. 

It's totally ridiculous that they would make us waste time seeing our primary docs for issues that very obviously go beyond our primary's scope of expertise. That is why we have specialists, hello!  Plus I explained to the lady that my rheumy TOLD ME to see a neuro, and literally the only reason my rheumy didn't refer me to a specific neuro is because she said we have a sad lack of good neurologists in my city (St. Louis).  She said she couldn't even recommend the neuros from her own teaching hospital she's affiliated with, because they "aren't good". 

According to her, there's only one hospital in STL with good neurologists, and she said it is near impossible to get patients in. She said she has had people she suspected as having MS, and she tried to get them in and it tooks months and months. 

It's just so frustrating.  I mean it's not like I have NO diagnosis at all.  I have the Sjogrens diagnosis. It's not like starting totally from scratch. 

I'm still fuming about it.  Now I'm debating whether I just go back to see the neuro I know I can get into, or keep trying to find a new one.  You know how it is, you just get tired and beat up and it makes you just not want to bother pursuing it anymore at all.

Then my thumb starts tremoring for 30 seconds and I just want to crawl in a hole. :(


FarmMom

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Re: "We don't diagnose, we only treat" neurologists
« Reply #4 on: March 19, 2013, 12:28:21 PM »
I think Dr.'s are beginning to work with the planning and building department.  When we went for building permits we were told the parcel needed an address to get approval.  Went to the post office to get the address and were told we needed a structure on the parcel to get an address??  HUH. 

Why is it those we are supposed depend on are often the ones that confound us the most.

Good luck finding a good neurologist.  Love the Rheumy we have, but Neurologist has been a pain.

lolo1979

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Re: "We don't diagnose, we only treat" neurologists
« Reply #5 on: March 19, 2013, 12:31:41 PM »
LisaMarie,
Yes, we do have a few groups like that in St. Louis.  My rheumy is part of network but she said she doesn't feel good about referring me to the neuro's in her network because they just "aren't good".  And I trust her 100%, because she is one of the few GOOD docs who doesn't try to downplay things and/or make you think it's all in your head.

This neuro that turned me down is part of another network in STL, and it's actually the same network my primary is a part of.  But that clearly means nothing to them.

I literally get OFFENDED at some of these docs, I really do. I am not in the medical field, but I do have a full time job in which I am expected to keep current in my knowledge, treat my customers with respect, and do what I can to get NEW customers.

I guess that is all out the window in the medical world.  These docs don't keep current in their fields, they treat their patients like idiots, and make it impossible for new patients to come see them. 

Sorry, I know I am generalizing and there ARE good people in the medical world too. It's just seems to be the exception rather than the norm - in my experience anyway.

lolo1979

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Re: "We don't diagnose, we only treat" neurologists
« Reply #6 on: March 19, 2013, 12:33:09 PM »
FarmMom - Love it! Kind of like the DMV huh? Maybe they're ALL in cahoots!


rnathans

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Re: "We don't diagnose, we only treat" neurologists
« Reply #7 on: March 19, 2013, 12:45:59 PM »
Could your rheumy or primary contact the neuro to request they see you? This may be a big help.

It is not uncommon for specialists, especially in fields with a shortage, to only accept referrals from physicians and not self referrals. As a patient this is frustrating and I understand how insulting it may feel. But the reality is that there are not enough neurologists to see all the patients that need to be seen and requiring a physician referral helps limit the slots filled by people who do not need a neurologist. This has nothing to do with padding bank accounts. If it were doctors would not care who they see since they will get paid for every patient. I can tell you that good specialists get really frustrated when they see someone who does not need to be seen by them to the detriment of the patient who really needs the specialist.

The real tragedy in all this is that there is a shortage of good ( and even not so good) neuros and rheumies and it is only going to get worse as time goes by.

rnathans

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Re: "We don't diagnose, we only treat" neurologists
« Reply #8 on: March 19, 2013, 12:50:09 PM »
I guess I was typing while you were. Since your primary is in the same network as the neuro your primary should contact the neuro to arrange an appointment. There is a big difference between a patient saying my doctor told me to call versus the doctor's office calling.

Hoping this will help.

quietdynamics

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Re: "We don't diagnose, we only treat" neurologists
« Reply #9 on: March 19, 2013, 12:50:44 PM »

I searched: neurologist st louis missouri, sjogrens

Muscle Nerve. 2006 May;33(5):672-6.
Peripheral neuropathy in an outpatient cohort of patients with Sjögren's syndrome.
Lopate G, Pestronk A, Al-Lozi M, Lynch T, Florence J, Miller T, Levine T, Rampy T, Beson B, Ramneantu I.
Source

Department of Neurology Washington University School of Medicine, 660 South Euclid Avenue, St. Louis, Missouri 63110, USA. lopateg@neuro.wustl.edu
http://www.ncbi.nlm.nih.gov/pubmed/16453296

Maybe send an email to them and try to find a Dr. with SJS experience?

What did the Neuro you saw put down for insurance payment? I would get a copy, read it and if you disagree call your insurance.

Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

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anabanana

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Re: "We don't diagnose, we only treat" neurologists
« Reply #10 on: March 19, 2013, 12:51:32 PM »
YES!!! You DO feel my pain!  I have a PPO too, very good insurance actually. 

It's totally ridiculous that they would make us waste time seeing our primary docs for issues that very obviously go beyond our primary's scope of expertise. That is why we have specialists, hello!  Plus I explained to the lady that my rheumy TOLD ME to see a neuro, and literally the only reason my rheumy didn't refer me to a specific neuro is because she said we have a sad lack of good neurologists in my city (St. Louis).  She said she couldn't even recommend the neuros from her own teaching hospital she's affiliated with, because they "aren't good". 

According to her, there's only one hospital in STL with good neurologists, and she said it is near impossible to get patients in. She said she has had people she suspected as having MS, and she tried to get them in and it tooks months and months. 

It's just so frustrating.  I mean it's not like I have NO diagnosis at all.  I have the Sjogrens diagnosis. It's not like starting totally from scratch. 

I'm still fuming about it.  Now I'm debating whether I just go back to see the neuro I know I can get into, or keep trying to find a new one.  You know how it is, you just get tired and beat up and it makes you just not want to bother pursuing it anymore at all.

Then my thumb starts tremoring for 30 seconds and I just want to crawl in a hole. :(

Oh yes, it makes you not want to bother, because you do feel beat down, tired of explaining yourself and proving something, fighting to get tests, I just don't understand the drs being stingy with tests, it's not like anything can be proven with just their limited in the box book knowledge...

And then yes, then a symptom shows up again and reminds you, and it's just distressing...
I am sad for our battle, as if being sick is not enough, then we have to battle with egotistical assholes.

My thumb starts jerking for a couple seconds too, it happens many times daily, in my toes too.   Most of the time it is mild, but one night I counted 20 big jerks in my thumb, it is very distressing...and that your Rheumy cannot recommend any good neuros, well, that's been my experience here too...It seems that it's a joke of a specialty, unless you're already dragging your leg, then they can diagnose you, maybe, why your leg isn't working.  But then they may just pull the psych card, just to ruffle you up. So why not figure out the diagnosis quicker, so we don't have to drag our leg to their office to have them tell us that it's not working ;p

My EMG//Ncv were normal too; I see a pattern here...I have primarily muscle weakness and some sensory stuff too.
Perhaps our Rheumys can help us more than the neuros, I mean, I know where else the neuros should be digging, running antibody tests for neuronal and paraneoplastic antibodies, muscle biopsy, but I can't force them to run these...in my opinion, they are doing us a great disservice by not checking everything possible, and there are A LOT of possibilities...for me, it just boils down to laziness...they don't want to look out of the basic box, because it would take thinking on their part, rather than just regurgitation...
Keep me in the loop Lolo...
Focal lymphocytic sialadenitis less than 1 focus, Dry everything, Neuro symptoms, Muscle weakness, Fasciclations, High inflammatory CRP,Tremor,Balance issues,Dizziness.
Take vit-D3, fish omegas, calcium, magnesium w/B6, B12, Restasis, Systane Drops, Seronegative

anabanana

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Re: "We don't diagnose, we only treat" neurologists
« Reply #11 on: March 19, 2013, 01:01:05 PM »
LisaMarie,
Yes, we do have a few groups like that in St. Louis.  My rheumy is part of network but she said she doesn't feel good about referring me to the neuro's in her network because they just "aren't good".  And I trust her 100%, because she is one of the few GOOD docs who doesn't try to downplay things and/or make you think it's all in your head.

This neuro that turned me down is part of another network in STL, and it's actually the same network my primary is a part of.  But that clearly means nothing to them.

I literally get OFFENDED at some of these docs, I really do. I am not in the medical field, but I do have a full time job in which I am expected to keep current in my knowledge, treat my customers with respect, and do what I can to get NEW customers.

I guess that is all out the window in the medical world.  These docs don't keep current in their fields, they treat their patients like idiots, and make it impossible for new patients to come see them. 

Sorry, I know I am generalizing and there ARE good people in the medical world too. It's just seems to be the exception rather than the norm - in my experience anyway.

I think you are not generalizing about the neuros, doctors in general today, and that many drs don't get up to date in their field, and are in denial the fact that the Internet exists with a lot of professional resources out there that help guide sick people. Yes doctor, I am quoting a teaching hospitals website that has a large specialized neuromuscular department known around the country...not just something someone made up on a message board :)

There are more baddies than goodies out there, I know...
And customer service, if I would have had attitude like some of these doctors give us, my manager would be having a "talk" with me.  Doctors are put on a pedestal, and should not be.
Focal lymphocytic sialadenitis less than 1 focus, Dry everything, Neuro symptoms, Muscle weakness, Fasciclations, High inflammatory CRP,Tremor,Balance issues,Dizziness.
Take vit-D3, fish omegas, calcium, magnesium w/B6, B12, Restasis, Systane Drops, Seronegative

anabanana

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Re: "We don't diagnose, we only treat" neurologists
« Reply #12 on: March 19, 2013, 01:08:40 PM »
Could your rheumy or primary contact the neuro to request they see you? This may be a big help.

It is not uncommon for specialists, especially in fields with a shortage, to only accept referrals from physicians and not self referrals. As a patient this is frustrating and I understand how insulting it may feel. But the reality is that there are not enough neurologists to see all the patients that need to be seen and requiring a physician referral helps limit the slots filled by people who do not need a neurologist. This has nothing to do with padding bank accounts. If it were doctors would not care who they see since they will get paid for every patient. I can tell you that good specialists get really frustrated when they see someone who does not need to be seen by them to the detriment of the patient who really needs the specialist.

The real tragedy in all this is that there is a shortage of good ( and even not so good) neuros and rheumies and it is only going to get worse as time goes by.

I see your point, but it still should be up to the neurologist to decide if a patient needs a further work up, and to listen to their presentation, not a primary or rheumy, and then the neurologist should decide if they believe its something neurological. And, a doctor really cannot say with certainty that someone may not need a neurologist, because symptoms present in so many ways. Everyone should have the opportunity to be seen if they feel the need, regardless...when they have been dealing with an illness and no diagnosis for some time...

« Last Edit: March 19, 2013, 01:11:42 PM by anabanana »
Focal lymphocytic sialadenitis less than 1 focus, Dry everything, Neuro symptoms, Muscle weakness, Fasciclations, High inflammatory CRP,Tremor,Balance issues,Dizziness.
Take vit-D3, fish omegas, calcium, magnesium w/B6, B12, Restasis, Systane Drops, Seronegative

quietdynamics

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Re: "We don't diagnose, we only treat" neurologists
« Reply #13 on: March 19, 2013, 01:12:47 PM »
I posted this under "Helpful Links"

Neurological/SJS ...it is 81 pages. Dr. Birnbaum sp?...will be present Neuro info at the SJS conference.
http://robertfoxmd.com/SjogrensByFox/The_Neurological_Manifeststions_of_Sj%C3%B6gren%27s_syndrome-Diagnosis_and_Treatment.pdf

Most Drs. really do not know about SJS....and cannot get past the generic statement you find in most descriptions;
Sicca....patient can lead a full life.  *Which is when I told this PCP...."some people should stay off the internet!"

Not sure if it is in the article; but I have read over and over that...
Dx'd SJS is 5% of population of that 20% will develop systemic symptoms ...and of that little 20% ..5% may develop Nuero/CNS.

So in a practice...how much time would a Dr. without SJS expertise  ...really be interested or need to know given we are not the norm of the type of patients  that walk in the door? 

If I was offended. I would have said "I am offended by your demeanor" 
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

anabanana

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Re: "We don't diagnose, we only treat" neurologists
« Reply #14 on: March 19, 2013, 01:16:01 PM »
I posted this under "Helpful Links"

Neurological/SJS ...it is 81 pages. Dr. Birnbaum sp?...will be present Neuro info at the SJS conference.
http://robertfoxmd.com/SjogrensByFox/The_Neurological_Manifeststions_of_Sj%C3%B6gren%27s_syndrome-Diagnosis_and_Treatment.pdf

Most Drs. really do not know about SJS....and cannot get past the generic statement you find in most descriptions;
Sicca....patient can lead a full life.  *Which is when I told this PCP...."some people should stay off the internet!"

Not sure if it is in the article; but I have read over and over that...
Dx'd SJS is 5% of population of that 20% will develop systemic symptoms ...and of that little 20% ..5% may develop Nuero/CNS.

So in a practice...how much time would a Dr. without SJS expertise  ...really be interested or need to know given we are not the norm of the type of patients  that walk in the door? 

If I was offended. I would have said "I am offended by your demeanor"

Exactly...
By the way, good link above for the hospital, their neuromuscular website is very valuable...
Focal lymphocytic sialadenitis less than 1 focus, Dry everything, Neuro symptoms, Muscle weakness, Fasciclations, High inflammatory CRP,Tremor,Balance issues,Dizziness.
Take vit-D3, fish omegas, calcium, magnesium w/B6, B12, Restasis, Systane Drops, Seronegative