Sunday, June 29, 2008

The MS Relapse is Not So Inexpensive

Friends, you may recall in March that I found myself in the mist of a multiple sclerosis relapse, no matter how hard I tried to wish it away. The time had come to Join the MS Party. You know the routine.

First, you call your MS nurse (or doctor's liaison) to explain your symptoms.

"Ok, tell me. What's going on?" Well, my left arm, fingers to upper back, has gone numb again and is getting weaker. My legs are weak and shake when I've been standing, like while rinsing dishes. And I've been having trouble getting up from a chair or the couch, so I've been pulling on the coffee table to help get up.

"How long has this been going on?" I've been having problems with my legs since about January. I thought it had something to do with the Rheumatoid Arthritis. The shaking just got really noticeable about two weeks ago. Oh, and I'm lilting to the left.

"Any falls?" No, but I'm bumping into things and not really walking in a straight line. And kinda hugging the wall on my stairs.

"How's your bladder?" No problems. I don't think there's a UTI.

"How are your eyes?" They seem fine actually. Colors look equal. But my ears have been ringing loudly again and are sensitive to sound.

"I think you need to come in." Yeah, I knew you'd say that.

Second, the doctor's visit during which you explain all of the above and go through the standard neurological dog tricks, er, I mean exam.

"Yep, you are experiencing a relapse. We'll start you on a 5-day round (IV Solumedrol which is intravenously-delivered, mega-doses of steroids) today. Do you have to be anywhere right now?" No, I knew I'd be getting hooked up today. I even brought a book to read.

"Oh, good. You came prepared." That's me, always prepared.

So I have finally received all the EOBs related to this visit, the 5-day IVSM, and the two follow-up visits which occurred in April and May. Here's the overview.
  • Original charges billed to Insurance: $4535.40

  • Charges disallowed by Insurance: $3551.91

  • Amount paid by Insurance: $ 784.24

  • Amount paid by Patient (OOP): $ 199.25
In April it was time to Surf the Magnetic Tube, ie. get MRIs conducted of brain and cervical spine. It had been 15 months since my last run through the machine and we needed a good picture to know if a change in Disease Modifying Drug was needed.
  • Original charges billed to Insurance: $6017.00

  • Charges disallowed by Insurance: $1002.85

  • Amount paid by Insurance: $ 4513.04

  • Amount paid by Patient (OOP): $ 501.41
In a follow-up visit, we discussed the results of the MRIs. A pretty picture of the new 3cm lesion in my cervical spine can be found in Sometimes Going with the Flow Isn't Easy. The good news is that with the addition of Baclofen, I have regained some freedom of movement. Yippee.

Now keep in mind that while my out-of-pocket was $700.66, I also missed two weeks of work without the possibility of paid leave. As a self-employed person, with somewhat seasonal fluctuations in work opportunity, that makes a huge dent in my income while normal expenses continue to accrue.

Fortunately years ago, I chose an insurance policy with a small 10% coinsurance level. If I had chosen to go with a lower premium but larger 20% coinsurance, my cost would have been $1226.32. With a 30% coinsurance, my cost would have been $1751.98. If I had had a high-deductible policy, the kind which President Bush and others have been encouraging, my out-of-pocket cost would have been a whopping $5997.94 for the treatment of one exacerbation and one trip through the MRI machine.

Who ever said MS was inexpensive? Nobody I know.


  1. Lisa-

    I think I would come unglued if anyone were to say MS, RA or any chronic disease is inexpensive. What you paid is unbelievable and then I think of others who have less insurance, no insurance etc--those who can't afford meds and I just cry. There is so much to be done!!

    I also understand the attributing how your doing to RA. I think I possibly had MS, much earlier but thought the time I couldn't get out of bed was RA--after all I was in a lot of pain?!!


  2. Being disabled is the most expensive thing I've ever done. I have GOOD ins., PLUS Medicare and, Lisa, each year ms gets more expensive.

  3. I am worried about the long term expense of MS too. I am going for some acupuncture tomorrow (not covered by insurance). Just an initial will cost $140.00 out of pocket. I hope I don't need a follow up any time real soon.

  4. I have Aetna insurance (through my husband), but it is the cheapest policy the small company (under 35 people) would get. Many of the employees are women (under their husbands' insurances), or bosses, who can afford the high monthly premiums.

    My husband just had his annual review and was telling his boss that his raise will barely make a dent in our monthly insurance costs. His boss was like, "Sorry." My husband likes his job and has been there for 2 years. I don't want him to change jobs again because of me.

    I just had my disability hearing the beginning of June, after more than 2 years of scanty employment, being laid off 2x because I was out so much from relapses, and then seasonally working from home:

    My lawyer believes I have won the case, but it can take a couple of months to get the "letter." In the meantime, I am unemployed again, besides some freelance writing gigs, when we really need the disability the most. I hope I get it, maybe just to be eligible for Medicare. Our mortgage and health insurance eat up most of my husband's income!

    Now I'm done bitchin'.....Thanks for listening.

  5. GG - I've made the MS/RA mistake more than once. Makes things interesting I suppose.

    And I really am fortunate to have an insurance policy with only $25 copays and 10% coinsurance for covered stuff. However, I'm also one of those who have practically no drug coverage, as my policy caps out at $1500. That covers less than 3 weeks of meds each year.

  6. Diane, I agree that MS is way too expensive. In 2006 after being denied an appeal for additional help for Copaxone. That year my medical expenses exceeded $16,000 out-of-pocket after receiving as much help as possible from a variety of sources.

  7. Nadja, I did acupuncture for awhile and enjoyed it. Typically the acupuncturist will suggest that you go weekly for visits until achieving a stable state. Then maybe you might go once a month for awhile until you only go when needed. Hope you enjoy.

  8. Jen, I hope you get your approval letter soon. Being under-employed has it's own challenges. This probably won't make you feel better, but maybe just less alone.

    My premiums run about $300 for just me, and that is a policy which was underwritten years before MS became official in my life. Mandy of MSmaze pays about $550 for just herself post MS and her monthly Copaxone copays are $500.

    It's an expensive world out there. The most important thing in my book would be to keep your teeth in group coverage as long as possible. Good luck.

  9. I am so incredibly fortunate to have excellent health insurance...your post reminds me of this, which I sometimes need to maintain a sense of gratitude. Thanks...

    Linda D. in Seattle

  10. Thanks, Lisa. It's better than a couple of years ago, when I was on my husband's Cobra (he used to teach in a public school system.) Great coverage, but that ran about $500/month for me, and my parents had to pay for it, because I had absolutely NO income and Bill had just started at his new job, which made him far happier than teaching. Now at least I have a little income here and there from the freelance writing, but definitely nothing to live off of! I barely contribute to the bills!