Doctors or Insurance, etc..who controls diagnosis?

I think this might be a weird question. And I hope it is not a hot topic!

My husband and I were talking last night about a few people I know with MS (2 online friends from a message board for mommy's of baby's born the same month my 3 year old was, and one the daughter of my daughters pre-K teacher). My one friend was diagnosed very quick because her first real problem was paralysis. My second friend had numbness in her mouth/tongue and slight balance issues. The third had slight double peripheral vision on one side.

I was telling my hubby how some people seem to have doctors that will order all the tests they can to find out what is causing issues. But, it seems like many people have doctors who will do one test, then wait until there is another symptom that brings you back to be seen before they will consider ordering any other tests.

Unfortunately, the neurologist I saw seems to be that kind of doctor. I had a previous MRI of the brain, which was clear. I think the new symptom of vertigo gave him a reason (excuse?) to order an MRI of the c-spine.

I guess I'm confused on why if someone has "symptoms of MS" (which I've been told I do) then why would they not do all tests available to either confirm or deny the diagnosis? Why do they move this slowly? Are they waiting for a major issue to start up to justify the cost of tests or DMD being used? Or do they move slowly to be extra sure?

It just seems like if someone has symptoms of MS, and other mimics have been ruled out, doesn't it make sense to start DMD as soon as possible?

My husband thinks it is purely a cost thing. That they will drag out the diagnosis process to either make more money on visits (doctors) OR to avoid paying the costs of DMD (insurance).

For those of you who have been in this process for longer then I have, what are your thoughts?

I will add that on friday I will be seeing a new doctor, a neuro-opthamologist, who specializes in hard to diagnose patients and who also has the reputation of being very pro-active in testing and treatment. I'm hoping he will not leave me feeling like I need to wake up blind or paralyzed before he will send me for tests.

[HVAC]

MS is a complicated diagnosis and and complicated disease. First off no two cases are exactly the same or present the same way. There are four different types of MS. There are over 800 neurological disorders and over thirty disease mimics. In my case I had to fight to get help paying for my DMD and then I found out I had the wrong kind of MS, the injectables do not work on. I have the type of MS there is no treatment for.

The tests and treatments for MS are expensive and have to be justified to the insurance companies this is true but it really is not a conspiracy. Tests are just part of the diagnosis process. The Neurologist gets more information from the tests which seem simple to us. Having us walk, checking reflexes, etc. They can tell where damage is. Sometimes they just are not sure and have to see you every six months to see how things change.

Alex

[Lulu54]

This is a great discussion to have because it does often seem like $$$ is guiding the dx process.

I think the climate/culture of the institution where you are being seen sets a lot of the precedents for what is acceptable.  This is all purely guessing on my part, but I would think that doctors who work in MS clinics will have an easier time justifying the additional tests.


I do know that my insurance company this year wants us to stop using the specialists and take more of our problems to our PCP's.  They doubled the copay for 'ologists but kept the copay half of that for the PCP's.  The insurance company pays less to the PCP than the specialists.  The economics of this is very clear.



Alex is so right - those  simple neuro exams can tell the doctors so much about what is wrong and where to look for evidence.  

So what about it everyone -what do you think about this?

Lulu

[Sailorsong]

I have been going to numerous doctors over the last 22 years in trying to find out what is going on. In my opinion it is purely the money that determins how things are done. Some times I think it is the doctors trying to get more money as in the case of one Neuro I saw. I was seeing him 1 per month and spending only enough time in his office for him to write up a new test each time. The last I heard was that he closed his office (I think everyone was figuring out what he was up to and stiopped going to see him and not getting any more referals from other doctors).

Dennis

[The_Lorelei]

I think that it really depends on the doctor.  I had insurance before and had to push my doctor into testing for anything before.  Not just MS related.  Exhaustion impossible to function through, weakness, mornings where I LITERALLY couldn't move my limbs, hormonal problems.  They did the normal bloodwork that you'd get if you went for your annual checkup and nothing more.

Now I have no insurance and no income.  I'm applying for a community program though my hospital and have a new doctor.  THIS doctor seems to be on top of things.  Scheduling appts, discussing diff meds that may work better, scheduling a new MRI.  I can't pay him, my insurance can't pay him, basically it's the hospital paying for it yet he's not being lax.

I think that it's possible that some doctors are just concerned with the money and/or not dealing with the insurance companies but not all of them.  After all, they're people just like us.  Some people are jerks, some of them aren't.

[HVAC]

The U.S. medical system and I have studied it is a fee for service system. Your provider is not paid at all to spend time with you. They are paid to provide as many tests and services as possible. They have to see a lot of patients and address one symptom per visit and some cases you can't even see your provider too often.

For example I had the bad luck of dislocating my shoulder right after my yearly exam. My insurance would not allow my PCP to see me for another two weeks. I could go to a specialist and pay three times the copay and pay expensive tests and possibly surgery but  I could not have her give me a shot and pop it back in. I waited two weeks and went to the PCP.

The worst part is PCPs are seeing the most patients and being paid the least. My Doctor is great but she has to move a lot of patients in and out.

The whole medical billing and insurance is so twisted it is not funny.

Neurologists being strong personalities are hardly ones to be afraid to perform a necessary test or prescribe a warranted treatment.

Alex

[twopack]

I think all the things you mentioned (and more) contribute to the difficulties.  Insurance drives medical practice in many ways, some clear cut and others very subtle.  I just finished listening to a recorded book titled "How Doctor's Think" that helped me sift through some of the connections.

If doctors are just in it for the big bucks......well, maybe they are delving into insurance fraud.  I really don't think that's the norm.  I only said it because I just don't see most doctors being able to make a fortune from their profession.  They deserve to make a decent living.  They have a very specialized education and tons of responsibility to go with the decisions they make.

They also have huge medical school debt, outrageous insurance costs, expensive office equipment and must employ several staff with the sole purpose of handling medical records, insurance billing and denial appeals.  Add long hours, piles of paperwork, limited family time and constant interruptions to so-called off time and it doesn't sound like such a terrific career choice after all.

Well, I got off track there didn't I?  It's not that I think any doc needs me as a defender.  This came more from the prospective of the many factors and restrictions our physicians must function within.

Perhaps sometimes our doctors are being cautious for our own good.  As much as we are eager to pin down our diagnosis, there are consequences to having the diagnostic code for MS added to our chart or insurance billing.  A firm MS diagnosis can limit or end our opportunities to make certain medical and life choices.  If made too quickly any search for other diagnoses and possible treatments/cure can end prematurely.

On the other hand...................
I hear echoes of my own struggle and frustration in your post.  More than once I have left a doctor's office mumbling to myself. "Okay, I'll just go ahead, do what I can and maybe someday when I can't move my legs to get out of bed one morning, some doc will hear what I'm saying."

For the record:  I don't think most doctors believe the average patient is lying about their neurological symptoms or imagining them.  I think they believe our suffering but too often are stumped by the cause (especially when there's no definitive test result).  After all, MS symptoms CAN be pretty vague.  Docs don't like to be stumped.  It's so easy to throw us into the it-must-be-stress-induced grab bag.

I'd better end this before I'm asked to join the On and On Anon group, eh?

Mary

[supermum_ms]

I'm often gob smacked at the medical dilema of the countries that have insurance companies running their health system, i dont understand how anyone thought it a good idea.

Anyway, in Australia we have a choice to have private health insurance or not, we pay around $500 a year as a health levy, at tax time and a little more if your earnings are high. Additionally to this, if your scripts go over a certain amount, the remaining scripts are heavily substituted by the government.

Everybody pays around $47 to see a GP but get back around $21, so a GP visit is around $26 and its the same for private health, no health insurance or social security, though SS people can get it bulk billed so they dont pay the $26 or anything. I did not pay one cent for any of my tests, neurology visits, psych tests, MRI, blood tests etc, zipp nadda nothing because it was through our public hospital. I know private insured that choose to go public so they pay nothing and choose private when its in their best interest.

Any disability gets you a health care card, not sure if it is income tested, i dont think it is, so that means all your scripts are subsidised, DMD's i've heard cost some only $6 per script. If you dont have a partner with an income you get a pension, free medical, reduced public transport etc.

We say we are the lucky county, times like this i understand why. I dont think money really gets into it over here, though people on the operations waiting lists would disagree.

Cheers.........JJ

[HVAC]

Supermum,
  We pay $1,000 a month for my medical which is more than our house payment. Our income has been cut in half. If I get really sick I just do nothing. I do not go to ERs, hospitals, or have surgeries because I can't afford it. I fell and broke my cheek one night and cut it bad. I waited until morning to go to my general doctor to have it stitched up.

Alex

[supermum_ms]

Full cover around $250 per month, if your ok about dropping birth and IVF, includes psych, dental, hospital, knee/hip, cardio, neuro's etc. too much to list, copay of $0 to $500 max, $250 hospital stay $0 after 2 nights.

Seriously, it looks like even if we do choose health cover its still nothing like what your getting hit with. There is nothing here with insurance companies desiding if they will cover a test, its dr sends you for tests, insurance pays it, looks like its desided by your insurance if you can even have a test or not. The only thing that would be an issue here, is if you chose a cover that didn't include that specialty, eg hip replacement, you'd go public instead, so still not denighed just replacement time delayed until your name gets up the list.

ER is free, only pain is waiting times, one of my local public hospitals i've never had to wait, walk in walk out. Hate to tell you but over here you'd without hassle get a pension of around $600+ per fortnight, plus all medical, ambulance, meds $5 - $11 and the list goes on, if your husband is earning depending on what it is would lower your SS, if he wasn't working then he'd get unemployment just less than a disability pension, you'd also get subsidised housing of 40% of what your rent is. Its approximates, probably not 100% right but as close to right as i can be, with out up to date research on it.

Oh carp, its so wrong whats happened to the USA, just plane wrong. It sort of makes sense why we get so many boat people risking their lives to get here, land of oportunity is another thing we say. I often feel guilty for what you guys have to put up with.

Cheers.......JJ