Appointment today

My MS Specialist at Duke who I saw last week had no time for me so he sends me to a pain clinic at Duke. The genius Doctor at the Pain clinic today tells me my pain may be due to my MS or my bad disk in my neck ( both our treated the same) and puts me on Gabenpentin. I was like wow my pain could be caused my MS or my disk, gee I never thought of that and you put me on the most used drug for MS, boy you are worth your weight in gold.. Hello couldn't my MS Specialist who cost me $200 out of pocket copay have done that? He did not do anything else but up my Trileptal.

The Anesthesiologist at the Pain Clinic tells me I have to see one of her colleagues at the same pain clinic for my headaches to be put on calcium channel blockers. Each visit is costing me probably $400 my insurance will also pay $400 + out of pocket. Now they have me scheduled for three visits. Couldn't my PCP or the Neurologist who does nothing else for me manage these medications? Duke really s-cks. No Doctor talks to another Doctor and they all pass the buck. I am not having an Anesthesiologist manage Gabenpenton, that is the dumbest thing I have heard of. Also I have to fill all the same paperwork out for the headache specialist in the same clinic because they do not share charts?

It is as if you are on an assembly line and each Doctor can only tighten one screw. I guess at Duke you need a proctologist to scratch your butt. I am  thinking of cancelling all future appointments and suggest my PCP try me on a channel blocker and she can manage the Gabenpenton. I learned a $400 + lesson never trust my MS Specialist.

Oh and both this Doctor and the MS Specialist wanted spinal MRIs. I had one in 2008 but since they do not share notes they did not know that. I have give the MS Specialist both the report and CD. I am not spending $2000 out of pocket on a MRI. I told her I have $2000 credit limit for all my bills, medical, car, etc. and no income so I can't afford all this stuff. She acted like I was joking. She said what about treating your MS. I told he I don't. I do not go to Specialist, PT, ER, etc.

I could have gotten my broken tooth fixed for the money I have just wasted. This is pure highway robbery. I was told this was a consult, not drug management for one drug. Then I have to go to another doctor for another drug. What am I supposed to do go to 15 Specialist one for each drug? Duke would really make money that way. The MS Specialist manages the Trileptal and Baclofen but not Gabenpentin.

Alex

[Lulu54]

Alex, can you possible go someplace else instead of Duke?  I just don't get it why your visits cost so much since your husband has their insurance.  

This whole situation is just so messed up.  Sorry it cost you again - trust your pcp to handle what she can.  And file for indigent help with Duke to pay those costs.  They have to have something to get you through this financial nightmare.

Lulu

[michelleric]

Sorry Alex.  The medical profession has lots of issues for patients. Cant stand that!  It seems this keeps happening to you. (and lots and lots of others...)
Michelle

[grannyhotwheels]

Wow Alex... So sorry your having to deal with idiots on top of this MonSter disease... When I first started seeing doctors I didn't have any insurance so to this day my PCP handles all of my medications...

If my neurologist wants me to start a different med I make him call my PCP to set it up... They have always done it this way for me and it works out wonderfully... Unless there are problems I only have to see my neuro once a year and my PCP takes care of everything else... But they do work together for me...

I'll be praying,
Carol

[jujuminx]

Holy moly Alex!  You sure can find them.  I am sorry you are constantly facing challenges.  I can see why you have elected to manage a lot your self.

It's like the medical profession is so out of touch with the real world...so sad for everyone.

Julie

[Sarahsmom46]

I know what you are talking about as I've been there (to a much lesser degree obviously).  

Don't give in to all this medical who does and gets paid for what business.  What I did was get a physiatrist - a good one - and she manages all my medications for MS for everything.  My neuro, come to find out, doesn't think that people with MS have a pain problem.  I just learned that after being with him for 3 years.  

So, if you can find a good physiatrist in your area that will be a one-stop shop with only one payment.  Hope this is helpful.  

Hugs to you my friend.

Julie

[HVAC]

Lul I do not have Duke insurance. My husband works at another University and we are on the State Health Plan which is managed by BCBSNC which gives money to every legislator in campaign funds.

Duke can not by law give people with private insurance any financial aid  or write off bills because of the Government and Medicare does not allow it.  Only those with out insurance can get aid.

That said people with private insurance have to pay more to make up for a hospital systems short falls because of Medicare. That is why everyone gets a different bill.

BCBSNC was set up by the Duke family as an insurance for those working families who could not afford Duke in the 1950's. Basically BCBSNS and Duke and UNC have had deals ever since. This was okay when health care was not so expensive and people used less. Now my insurance carrier makes deals with the hospitals to charge more and pass the cost to the consumer.

Unfortunately we do not have many MS Specialists in our areas. The guy at Duke is very good and if I lose my place with him I am sunk. There is only one MS Specialist at Duke. There is only one at UNC but she only likes patients with RRMS she can put in her research studies. She is heavy into research.

You have to either be in the Duke system or UNC system. There is also Raleigh Neurology which works with Duke. They have two MS Specialists I was with them and they treated me like cr-p. It took nine months to get a six moth appointment in advance. The MS Specialist was the one who said I will not treat your symptoms until you either get optic neuritis or can't walk. He has too many patients and I fall to the bottom of his priorities as with my current Doctor.

My first two appointments with the Doctor at Duke were great then he had to take over another MS Specialist's case load so things have gone down hill. They are trying to hire another MS Specialist. Everyone is. The MS Society will even give a scholarship to any Neurology Student who will go into MS, in ten years no one has been interested.

My PCP used to be the best ever. She has a private practice not part of UNC or Duke. She has three young children, one with issues and is divorced and overwhelmed. She wants to help but she is too busy as well. Why do I stay? She only charges me my copay, her receptionist let it slip. I have tried to pay her more and she refuses to take it. When she can she sends me to good Specialists who right off my bills as well. She a lot gives me tons of samples. She or her partner are available by phone after hours. She also does not believe in expensive unecessary tests.

I have looked for a new PCP. They are either at Duke or UNC and you go to tons of Specialists and rack up bills or they are private, out of network and wnt the whole bill upfront and you file insurance. I just do not have the money.

We basically live paycheck to paycheck with no savings (that was eaten by MS testing). We have a good modest life but Medical could kill us. The State employees took a freeze on pay years ago and our health care cost rise greatly every year. I am almost twenty years from retirement.

Duke will not take $10 a month. They send your bills piece meal. Each bill is divided by the Duke diagnostic clinic and Duke Hospital then if you need assistance they divide them up to say $33. But then you have many $33 dollar bills due say a week apart. If you get confused and pay the wrong one they can call off the whole payment system and you owe the whole thing. After you pay a bill say for the Diagnostic Clinic they transfer it over to the Hospital again so it all goes to same place. They spread the bills out so you do not think gee I have a big balance. It is terribly sneaky. In research I came upon an article in a business journal talking about this brilliant strategy. Many hospitals do this.

There billing is at a separate location in Research Triangle Park. The health care providers have no clue how much everything they do is. In the 1990's I was charged $165 dollars every time I blew into their peak flow meter. I cooplained to my Doctor and said could I not blow in my own flow meter and show you and she said "What should you care you have insurance".

Alex

[COBOB]

Just think, there are a whole group of elected officials that assure us that the medical insurance and healthcare delivery systems are not broken.  The problem s that too many people believe that line of illogical thinking because they never access the system.  Either they are healthy or have no insurance.  I have great insurance, but it would be much less expensive if I moved to the UK with my partner (dual citizenship.)

Now, I know that universal coverage has its own set of issues, but the care is there, and the delivery model is not profit driven.

Bob ('s opinion)

[johnniebear]

Your story about insurance is very saddening,  it seems way to often it repeated for so many people.


The politics  alone of Healthcare VS Insurance Co's alone could spark a big debate on our forum..

take care

Johnniebear

[becca204]

What a travesty. Seriously infuriating. The system is so broken, if you don't have a common cold you are in trouble, and if you have MS you are just in hell I suppose.

I am praying for you!

[Sailorsong]

I haven't been posting lately, but had to respond to your post just to let you know that you are not alone in the medical nightmare.

I get my health care through the VA which works similar to the way Duke works for you. I have a $15 co-pay for my PC and $50 co-pay for anything else ( specialist, PT, etc). Like at Duke each of the doctors I see at the VA will only handle medications they want to handle. MY VA Neuro will only handle my tremor medication, My PC handles only my BP, GERD medications, and my Vanderbilt Neuro only handles my main MS medication. And to make matters worse I can only get my MS medication filled if the VA refers me to the Vanderbilt Neuro which they haven't been doing since January despite the VA neuro requesting the referrals to him. Oh yeah I almost forgot they also don't really give me anything for pain. It was only after about 1 year or so of pleading with my PC they I got any pain meds and am only allowed 30 pills per year.



Dennis

[HVAC]

All of us deserve better. This system is also a big money waster for the insurance and the hospital. The problem is Medicine is going to the VA model with all the expensive copays, etc.

Thanks everyone for your support.

Alex

[SarahL2491]

Did I hear right that medicare won't pay for psych visits for seniors??
just wondering, saw the post about the psych managing meds

[HVAC]

SarahL2491 I think you may have the wrong post? I am not on Medicare and no nothing about what it covers or does not. Sorry?

[maestro1959]

Alex, I am very sorry about what you are experiencing.  It seems many, if not all of us had the opportunity to see a new doctor/specialist, we are encouraged in the first visit only to have it all go quickly downhill from there.  The doctors turn out to be nothing they were touted to be.

Then we find out the insurance company has one hand on our wallets, and the other, well we will just say somewhere else.

The disillusionment is disheartening.  All this, and we still have a disease we are left to deal with.  My biggest challenge to date has only been that my neurologist will not treat any patient on Medicaid.  He would continue to see me, and rack up the cash, but do nothing.  I really mean nothing.  He believes anyone on Medicaid is a non-person.  During my last 3 visits to him, he never touched me, no basic neuro exam, no flexing my arms or legs to see if my spasticity was worse, nothing.  Only when my PCP asked me about my visits did I find out his dirty little secret.

I said all that to express how we have to endure needless hours of extreme cost, and little or no treatment.  To make matters worse, as if they could we then travel down the old anxiety road because we are having to start from square one with another new doctor/specialist.  My stomach churns as I wait for my appointment with a new neurologist.  I wonder what he will say.  Will he negate my diagnosis, remove all my medications, etc.  We just never know how it will turn out, and our previous experiences are of little or no comfort to us.  These are all stressers no one needs when battling any disease.

I am abundantly grateful to my Primary Care Physician for having the courage to tell me the truth about my neurologist and make an immediate change.

Alex, I hope the best for you throughtout all this turmoil.  I guess the best policy for all of us is to continue to speak as loudly as we can.  If we can get just one of our voices to be heard it may be a first step to change.  I am praying for positive change for you, and financial blessing in the wake of these latest hardships.  Try to believe there are brighter days ahead.  One thing is certain, we here have your back.

Most sincerely,
Beth

[opie74]

My borhters mother in law lives in NC with ppms.  she does not get this kind of run around.  I can get the name of her doc

[RedFlame]

Hi Alex,  it's just a crime that you have to pay so much and that your care is completely disjointed.  Sometimes I think these doctors are just plain lazy, or are too dis-interested to actually read reports on tests already done.  THey repeat expensive reports and schedule appointments only to re-iterate the same things they said before.  

I have one doctor that manages my Gaba, Baclofen and Tramadol, then another who manages my Vicoding, then another that manages my Klonipin (klonopin) and then my GP manages my Thyroid.  

I'm so sorry you are going through all of this, and I hope that you can muddle through the maze and reduce the number of appointments.  I don't understand why PCP's don't manage the bulk of meds.  

Some of this is just plain wasteful.  

Red

[HVAC]

Maestro
I am sorry about how you are treated. You are a person of dignity and should be treated as such. In our State the Legislature has cut Medicaid dramatically this year. Since the federal government matches 2/3 that means a we lost 1.4 billion on federal funding.

What many States are doing is cutting the money doctors receive for Medicaid patients. Plus doctors who take Medicaid have to pay a fee to the government for all their non Medicaid patients. So no they do not want Medicaid patients. Soon the only Doctors who will take Medicaid will be ones who work for hospitals that have to.

Basically they do not get paid enough for caring for Medicaid patients and they have to pay a fee to the Government for all their other patients and they have to charge all their other patients more for their care to make up for the lost revenue. Neurologists make very little. They come out of school with a lot of debt and make $40,000 a year. Most Doctors are paid for procedures and Neurologists do few procedures.

I advocate for Medicaid and Medicare patients all the time on the State and Federal level even though I have to pay more for my health care to make up for the lost revenue.

The federal and state governments intend to gradually cut funding to Medicaid all together which is awful. Not only for those who need this program and for the rest of us. The more they cut, the more the rest of us have to pay into the Medical system to make up the difference.

That is why my insurance is so high. I am in the biggest group plan in the State (all the State workers and their families). The Hospitals like Duke charge us the most to make up for their lost revenues. I am charged a $1000 dollars more for a MRI to make up for what they lose on Medicare and Medicaid patients for the same test. It is perfectly legal. It does not matter that we live paycheck to paycheck.

Plus this is why no one wants to become a MS Specialist it is a hard job and it does not pay well. Neurologist either go into research for MS or to teaching hospitals.

In the last month I have talked to a US Senator and to a State Medicaid Board about this problem. I was even quoted by a top reporter in our area.

Basically the whole medical system has to be fixed this trajectory is unsustainable for Medicaid, Medicare and those on private insurance.

I liken the Medical system to the Titanic. The poorest people have sunken, and now the lower middle class. I think by the time the middle class get hit which is soon people will start caring and getting active politically. When you are not effected you do not really care.

My insurance use to cover most things. Then I had to pay more and more. Then I got political because I had to.

I will continue to advocate for all of us. Because Health Care should be equal.

Alex

[HVAC]

Red

My MS Specialist is not lazy he just has too many patients. When the other MS Specialist retired from Duke last year he got all of his patients. I was upset because this was my only appointment with him in 2011 and he basically came in and said I am going to see you in February and I am making you an appointment with the pain clinic.

I thought the pain clinic was just a consultation and my PCP would take it from there or they would work with my Psychiatrist who handles my pain medications and is on the faculty at Duke.  The Pain Clinic will not work with either. They will only work with my Neurologist who referred me  and only spent ten minutes with me this year.

Duke is made up by professionals who only do one thing. It is just crazy. Many are very good but myopic.

Alex

[ShadowsSister]

So sorry to read about all your insurance and doctor problems.

I feel so blessed since I moved to PA. I have wonderful doctors who really care about me the person, I am a medicare patient since 1986. The insurance has changed a lot over the years, but Thank God it's there for those of us who need it.

My PCP took over the management of my morphine so I don't have to deal with the pain clinic. They were a joke. I don't see a neuro, because I can't be still long enough for a new MRI.  

Like I said I am one of the lucky ones. TheDoctors in Pittsburgh who are treating the thyroid cancer is also very good.

Know that I keep you in my thoughts and prayers.
{{{{~!~}}}}DJ

[Lulu54]

The madness has to stop somewhere, or at least we would think so.  But I don't know how many more people are going to be pushed under by these systems before the powers-that-be figure out a better system.  

Thanks, Alex, for taking the time to explain this.  I know I've asked before, I have trouble grasping the concept of what you face that I had to ask again.  It just boggles my mind.

One of the craziest I've heard was Shadowssister (DJ) got a letter from the government tell her that she is no longer disabled -her age puts her into medicare and out of medicaid and the government benefits for many of her meds have entirely disappeared.  I can only ask WTF are we doing in this country????

[MSdurhamite]

Ugo Goetzl is my doctor and also 2 other family members.  He is awesome and very active in MS Society.  I had a very nasty experience with the MS expert at Duke -- who missed my diagnosis after forcing me to have evoked potentials instead of an MRI.  I have recommended him to many in the MS community and friends seeking a reliable diagnosis.

[MSdurhamite]

Ugo Goetzl is my doctor and also 2 other family members.  He is awesome and very active in MS Society.  I had a very nasty experience with the MS expert at Duke -- who missed my diagnosis after forcing me to have evoked potentials instead of an MRI.  I have recommended him to many in the MS community and friends seeking a reliable diagnosis.

[HVAC]

MSdurhmite I was his invisible patient. Great Doctors who are really busy and they have patients they can't even remember from visit to visit even with charts. I do not fault him he diagnosed me. He thought of me as someone who was never going to have problems with MS. I have heard all the wonderful, caring stories. That was not the Doctor I had he was busy and interested in people with real MS problems. He is too busy that is all.

I praise all he does for MS patients and the Society. I love his talks. We stand next to each other at MS events and he never even says hello. I would send others to him. He is great with most folks.

Alex

[MSdurhamite]

Sorry it was a bad experience.  I have been going to him since 98, so he's had a chance to know me for sure.  He even knew me at Costco when he was pumping gas.  I had such a bad experience at Duke, so I know what it is like when it feels like you are not registering on the radar.  Have you tried the MS support groups for ideas?  I was shocked when I went to the exercise class at the stories told about clueless family doctors they were still seeing for their MS care to stories of docs they absolutely were getting top self care from.  

[HVAC]

MSdurhamite. I have heard the his patients from before I went to him get great care. Also those with more disability. I started in 2008 and he has such a patient load. I go to two support groups. Most people in the support groups go to him and love him.

I am active in the Society and think the world of Dr. G. He volunteers tirelessly and works very hard and has a large case load. He has too many patients. As does my Doctor.

My PCP is great. She she has been very busy lately.


Alex