To Take Drugs or Not – That Is The Question


When I was first diagnosed, the neurologist pushed a pile of information across his desk at me and told me to go home and digest it – and come back in a week with a decision as to which drug I wanted to start on immediately.  It was understood that I would be starting on a drug.  There was no discussion about alternative therapies or treatments or about the option of NOT taking anything.  I just needed to choose a drug and start immediately.  So I did.  I chose Betaserone – and I started within 2 weeks of my diagnosis.  I experienced all the side effects that they warn you about:  flu-like symptoms, uncontrollable shaking (assumedly from a spiked fever in the middle of the night), injection site irritation and general malaise.  I briefly considered going off the drugs altogether, but the doctor scared the crap out of me about permanent disability if I went off the drugs – so I just sucked it up and stayed on Betaserone.  For 5 years I shot up every other night.  I didn’t know how bad I felt or how much it had changed ME until I went completely cold-turkey off of it 2 1/2 years ago.  I wrote about that decision here.  It was a good decision then – and I’ve felt better since quitting the drugs than I have since being diagnosed.  So what’s the problem?  I had to get new insurance which meant a new doctor – which meant questions and second-guessing.  “Ok,” reasoned the new doc, “it’s gone well for you as far as we can tell, but there’s no guarantee you won’t have a major relapse – one that you can’t come back from.  Is it worth it?”  UGH.

“It’s Like Deja-Vu All Over Again”

I had made the decision once.  Now I’m second-guessing myself.  All the old insecurities came up.  The what-ifs were eating me up.  So – “let’s get an MRI and take a look,” went the internal dialogue.  I’ve been off the meds for 2 1/2 years – now would be a good time for a “look see” to check if there’s been any change in my noggin.  Based on what’s found – I’ll be armed to make a good decision.  There are new drugs now – I won’t even have to consider injections again.  Knowledge is power.  Let’s gather all the available information and make the best possible decision.  Makes sense.  Let’s do this.

MRIs Cost How Much?

As I mentioned, I had recently changed insurance companies based on my husband’s employer’s decision to no longer offer health insurance.  This came about because the insurance company they had been using was increasing the premium by 75-100%.  WHAT?!?!  Yep – you read that right.  So – I completely understand the employer not being able to absorb that type of hit – and I’m ever so thankful that “Obamacare” exists in the U.S. now.  Prior to that – I wouldn’t have been able to get other insurance due to a “pre-existing condition” clause that allowed insurance companies to exclude those of us with the audacity to actually contract a disease.  But I digress.

MRI, brain scan, lesions, MS, multiple sclerosis

Since I hadn’t dealt with this insurance company before, I started the process of pre-certifying my procedure (the MRIs).  Yes, I was told, I could get the MRIs.  Of course I need to satisfy my deductible ($750) and then it would be covered at an 80/20 ratio.  In other words, the insurance company would pay 80% of the costs and I would pay 20%.  Next task: find out the actual pricing on MRIs.  My doctor wanted me to have them done at the hospital where I had them done in the past to be able to compare them.  Also – the MRI at the hospital is a 3.0 Tesla MRI – a very sensitive MRI machine.  OK – this all makes sense to me.  I’ll need the MRIs done both with and without contrast.  That will be an additional cost of course.  My neurologist wants MRIs of my neck, upper and lower spine.  Still good with all of this.  It all makes sense.  I call the hospital – no one can tell me how much it costs to have an MRI done.  WHAT?!?!  No joke.  I spent a couple of days calling all over to try to track down the information I needed.  Lumbar MRI – $4622; Cervical MRI – $4561; Brain MRI – $5110; this does not include the cost for the Radiologist to read the MRIs. I was on hold for 25 minutes with their office and finally gave up.  So – my responsibility will be approximately $3600 + the Radiologists charges and the cost of the contrast.

Decisions, Decisions

Actually, the decision was pretty easy based on the cost projections:  I’ve decided not to sink my family’s budget and just think “happy thoughts” and hope for the best.  Seriously.  My rationale (other than I can’t afford this) is that I’ve been doing so very well off the meds for the last 2 1/2 years, I’ll just assume that is going to continue – and I’ll treat the symptoms as they come.  If they come.  When they come?  Who the hell knows.  This is MS.  Everything changes day to day, hour to hour, minute to minute.  So for now – I’m grateful for however long I get to feel good.  And see.  And hear.  And move.  And think.

Global Healthcare

When I posted the numbers involved in my MRI plight on the FUMS Facebook page, I heard from a lot of people all over the world who were grateful that they had the government provided healthcare that they have.  Elsewhere.  Not in my home country.  I’m beyond disappointed in the United States.  We the people – deserve better.  For a “Christian Nation” – we don’t act much like it.  Taking care of each other seems like the first and guiding principle of Christianity.  Why have you forsaken me – and all of us who had the audacity to contract a disease?  There but for the grace of God go each of you (and your children and your grandchildren) . . .

What’s your take on healthcare costs – and what’s it like where you live?  I’d love for the community to share your stories.  Sharing is caring!!  Please leave your comments in the comment section below this post.  Thanks.


8 thoughts on “To Take Drugs or Not – That Is The Question”

  1. I don’t blame you for not doing an MRI since you have been doing well. That may go on for a long time. We will think that way, right?

  2. Stopped taking Avonex last November due to insurance issues. Never felt better! Got Obamacare and still haven’t been to the doctor. I know he’s going to push for an MRI, but now I wonder. Does Medicare charge as much?

  3. I find it amazing how the medical community has responded to having a national health care system. Since costs have gone up, due to having to cover everyone including those of us with pre-existing conditions. I know of quite a few people that lost their health insurance or their deductables went skyrocketing up. A close friend of ours husband needed a pacemaker. It wasn’t an emergency and could have gone without for a good time. Their health insurance was going to cost them a lot more in the near future due to Obamacare. He elected to have the surgery to save the extra exspense.He had a bloodclot form and go up to his brain and died right then on the table. All for elective surgery. I know quite a few Doctors that are planning on retiring and closing up shop due to the program and all of the extra paperwork.

    We are lucky, I spent 22 years in the Navy and I am retired with full benefits and rated 100% with the VA and social security. My family and I are pretty well covered and our costs are mostly covered. We do have to have a supplemental policy in case one of the kids have any high cost care problems. It is pricey and we, luckily, have never had to use it. The cost of any meds we have to get are getting pretty high. My wives asthma inhalers cost $45 a shot.

    I believe it would have been a better system to have left the system open to a free market system with some changes such as the pre-existing condition coverage and a system of health care savings plans. The current system I am afraid will get too costly and unmanageable down the line as it already is showing those signs.

  4. Great article. I have nothing to add in regards to insurance, as we are lucky that my husband has pretty good insurance. But no one in my family has to have expensive tests run, a disease, chronic illness,or some type of cancer. It’s scary that a family has to choose between the health of a family member and going bankrupt. 🙁 I hope that you continue to feel good so you won’t have to go in debt.

  5. There are 2 reasons why I don’t use DMDs for my MS, 1-COSTS, 2-Serious side affects.
    As I age with this disease, I find I cannot really afford to be healthy and I HAVE INSURANCE and MEDICARE. Neither one pays what it should! FOOD or HEALTH? Quite the question for older Americans!

  6. I, like yourself, am not on any Disease Modifying medication for my MS. In fact it has been about 8 years since I have been. I did have a recent MRI (the last one was 10 years ago) and there were no changes at all. None. BTW, I live in the same city as you do and I paid $0 for my MRI’s. I have Medicare and Tricare (due to my Naval Service and retirement) that covers 100% of my medical bills. I do know that MSAA has a program that will pay for your MRI.

  7. I am currently taking Copaxone three times a week and definitely don’t want to go off of it. Last year when I had a lapse in insurance and didn’t want to pay for Cobra, I did try life drug free. (Really because I’m cheap but of course I used the drug-free, natural living reason) A couple weeks in I started feeling more fatigue, numbness, loss of balance and generally just bad. I did have a vision relapse as well. My job is primarily visual merchandising – great start to winning friends and influencing people huh? Needless to say, the quality of life without ungodly amounts of coffee to get through work and rolling into a comatose state on my off days is so much better. The walking cane wasn’t bad though – it’s like a magic wand that turns people nicer.
    As far as the mri costs, I’ve found that many insurance companies will cover whatever is done in office during your visit, as part of the visit. If I can find a doctor who has an mri machine in house that can make a huge difference. The same goes for blood tests and other lab work. And if not, I just make monthly payments. No it’s not the best system, but it’s not worth my health to push things under the rug because I happen to feel ok right now.

  8. I don’t know why some neurologists keep pushing those meds. When I was first diagnosed my neurologist, after the recommend second opinion, talked to me about medication. I remember him saying I wasn’t forced to use any because he could not guarantee that the medication would work. So I read online (medline) about the researches and, after a few weeks, no rush the doctor had said, decided to start on Avonex. I was rather happy with the 30% the meds could lower the chance on a new relapse, ever though it did nothing for my MS symptoms. But as time passed the side effects got worse up to the point my legs hurt for weeks after injecting them. And one time I got fed up and decided to stop. I told my neurologist I had stopped and why and he listened and said OK. That was 1 1/2 year ago. I feel mostly the same accept that I feel stronger because I can walk/cycle/fitness when I feel like it. I’m not saying it was a wise decision or the best I can do for myself. Time will tell. I might get a relapse this year, or next year. Or in 10 years, or never. Who knows? But that’s MS for you. So, everyone, decide for yourself. Make sure you get all the info you need. And be kind to yourself. Love from NL. (Health insurgence over here would cover the MRI, but I’m not getting another, I already know what’s wrong)

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