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The Financial Stress of Multiple Sclerosis

The Financial Stress of Multiple Sclerosis

I can remember walking to the mailbox with a feeling of curiosity, wondering what might be waiting for me there. Sometimes even excitement! “Oh I hope that package came today!” Do you remember that? Wow, I miss that… Now I only walk to the mailbox with a minor feeling of dread… I already know what is in there. Bills, collection notices, Social Security paperwork, stuff like that. But the bills, they just keep coming! I seriously find myself thinking that the amount of bills I get are disproportionate to the amount of services I use, like, “I only bought 3 things yet I have 12 bills in the mail!”. It has gotten to the point where I don’t even open them anymore, I have a large plastic bin that they all just get tossed in; I can’t pay them all, I don’t even have a steady income so why bother? Being “sick” is just too expensive

Expenses, expenses, expenses

When you really balance out how much I owe to either my current medical clinic, my previous medical clinics, my specialty pharmacy, different infusion services I have used, my many hospital stays, my lab work, medical collection agencies, etc, it becomes crystal clear that I have way more money in need of going out than I have coming in. And of course, this is just a few examples of the cost of living with my multiple sclerosis; plus, I still have all sorts of regular, non-MS related bills as we all do. It’s overwhelming! I feel like I am drowning in debt! How does anyone afford this life? Especially someone who has no spouse to turn to for help and does not even receive Social Security benefits despite the fact that I physically cannot go out and work a job? I can only think of that famous chocolate factory scene from “I love Lucy” where the chocolates coming out on the conveyor belt for sorting start coming out too fast to possibly sort them and so they start eating them. That is how I feel about my medical bills. I can’t keep up.

Losing much-needed services

But then it gets worse! People start cutting you off from services you need to deal with and treat your MS! For example, I am currently blocked from using any services at my medical clinic like doing labs or even scheduling an appointment to see my neurologist despite the fact that I am trying to make payments towards my balance that continues to grow at an alarming rate! They don’t care, they say it’s not enough money, so basically, there is a monetary value on my health and well-being! Granted my neurologist, who is awesome, said to come in but instead of checking in at the front desk just to head straight back to his office and he will see me, but still… It is very depressing and stressful to be trying as hard as you can but still, no one wants to work with you, your best is just not enough, all that matters is the mighty dollar. Now my situation is a little ridiculous (and yes, in response to what I know many of you are thinking, it looks to be legal because it’s a private medical facility not run by the government), but I know most of us all feel the same way about the financial life MS stick us with; hopeless. Getting the medication or treatment we need is not about how bad we need it, it’s about how much money we have. It seems so unfair that how well you can treat your MS (or any other disease really) depends on your wealth! Because of this, we do not all have the same opportunities and that makes me both sad and mad.

More to stress about than just your health

So rather than being able to focus on just getting healthy, we often have to deal with the stress of bills, trying to figure out how we will be able to afford certain things, spending hours waiting on hold trying to talk to someone about making a payment so you can order the medication your doctor prescribed you, constantly being bombarded by people calling you to basically demand something from you that you don’t have (but when you need something from them they are all of a sudden unreachable) and of course the never ending tsunami of bills and collection notices. People talk about celebrities with MS and how horrible it is but honestly? I am sorry to say, they have no idea what MS is like for people in the real world. They can get the best medication, they can hire a personal chef, a personal trainer, a massage therapist, they can hop on a jet and fly to another country to have a treatment done that we don’t do here in the states and they can do it the very night they learn about it. Things most of us only dream about or spend years raising money for. Just get up and go like it’s a trip to the store to pick up milk. Their doctors are probably even on call! They have no idea what sort of stress the financial life of MS can cause. Of course this is just an assumption… I often wonder how well I would be doing today if I never had to deal with all that financial stress over the years because as we should all know, stress is bad for MS.

How much financial stress does multiple sclerosis cause you? How much of an obstacle can the cost of living with MS be for you?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • bstraiton
    8 months ago

    I totally understand where you’re coming from. It’s a constant battle when you can’t be on medical assistance. I am lucky enough to have MA coverage for now but I haven’t always been. Just the beginning of 2018 my MA was cancelled Feb 1st. It took me 5 months to get it reinstated. So many phone calls. So much paperwork and proving we can barely survive on 1 income with a baby. I was cut off from the most important meds and I paid for that dearly. I didn’t know it at the time but by March I was already having problems that told me I was having a relapse. First my left leg one morning just wouldn’t hold my weight standing up from my bed. I fell thankfully back onto my bed but not before hurting my knee and hip. After a week of major pain and using a cane to walk I was beside myself. All I could think was is this it? Is this really the end of my mobility? How can I be a stay at home mom with a 15 mo old and actually keep up? What impact will this have on my baby? My marriage? I was so worked up and frustrated I finally decided to go to the ER. My right side had gotten very weak after having to compensate for my left leg. I knew I had to get help but w/o insurance the ER was my only hope. The pain had been manageable with my regular tramadol(1 of 3 meds I was able to afford bc so cheap). That is until it was time for xrays and ct scans and an MRI. I knew the pain was necessary but once the techs started moving and rotating my hip I broke down sobbing from the pain. Thankfully they saw how much I was suffering(I was quietly sobbing as I always have but my face told it all) and I was given dilodid before they took me down for the ct and MRI. I knew I needed steroids but they didn’t. I was sent home with some Percocet and a referral to a specialist. As soon as that cleared up which took around 4 or 5 more days and I was able to walk again my vision went crazy. I still haven’t the correct words to describe what I was seeing. The best I could do is tell my neurologist(who thank God was still helping the lil he could via phone) I was seeing like an after image like what you see momentarily after a flash camera takes your pic or a very bright light was shown in ur eyes. I couldn’t read very well either. Every time I tried the letters were jumping around and moving and shaking. The smaller the print the worse it got. I even skipped renewing my dl on my bday when it was due bc I was afraid I would be able to past the vision exam. That persisted for months but after about 6 weeks I could read again. Still saw the after image/auroa at everything in my field of vision. I’m mid may I finally got my MA reinstated. I had a laundry list of phone calls and appts I had to make asap. My Neuro team was top of my list of course. I got in asap and I was sent to MRI within a few days. It was on a Sat morning so my Dr didn’t see the results until Monday evening. Tues morning I get a call from his nurse saying I need to be seen by the lead specialist of my office asap but he was not able to fit me in for another 2 weeks so he instead set me up with his p.a. whom I dispise. Love everyone there but him bc he treats me like a child and talks very derogitorily towards me. 1 example: when i first started going to the Schapiro Center for Multiple Sclerosis I was set up with him. I had been on iv steroids every other week for the previous 4 mo or so. My joints ached and I could barely move. So I asked to be put back on the dose I had previously been given of my pain meds the last round of steroids I had. His response? Oh I don’t think that’s really what’s wrong here. Your are obviously morbidly obese (I mean I’m not rail but I’m no blob either) so I feel the pain is being caused by your weight. Why don’t you try weight watchers or something similar and get a gym membership. I was irate! I never allowed another appt with him to be made until this “emergency appt” was him or wait 2 weeks. He blows me off of course and well it was bad and another story entirely lol so I’ll move on. Bottom line was my MRI had more than just an abnormal result. I had an ear infection that I was on antibiotics for so I couldn’t start steroids til that was done. By then I was able to meet with my lead neurologist to review and discuss my MRI. So he comes in and has a somber look on his face so I knew it was bad. He’s usually a very light hearted guy. We begin looking at each slide and I can see I’m in trouble. Lots of new or enlarged lesions. We get about 3/4 thro and bam! The next slice shows a very large bright spot like golf ball size. 32.78mm to be exact. He turns to me and says this is why you’re here. This is basically an inflamed hole in your brain. The dark center about pinball sz is dead brain tissue that most likely will never heal. He says your in the throws of rebound disease caused by the sudden stop of my dmt treatments bc I had no insurance. I was told that if it had appeared much closer to the cerebellum id most likely be dead. He ordered a 5day loading dose of 1000mg solumedrol then 1/week for 6 weeks and then another MRI and eval. I was too shocked to react. He asked if I was ok and I mumbled yes somehow before leaving. As I’m walking out to my car all I can think is omg there’s a literal hole in my brain! All bc my county couldn’t get their shit together over some missing paperwork and apparently not being able to prove I’m a U.S. born citizen. I call my husband to tell him the news and he went silent then started to cry. That’s when it hit me like a ton of bricks. I was furious, scared and devastated. Now here I am 4 mo later and finished with steroids and beginning physical therapy again. I’ve noticed a significant change in my cognitive abilities and it’s extremely frustrating. All this damage and suffering bc of the gov’t bottom line. If you are still uninsured and struggling with medical expenses I highly recommend getting in contact with the MS Society. They can and will find a way to help you get insurance or funding to get you in to see your Dr and get you back on your dmt and other meds. I found this out only recently so I was not able to utilize them but I’ve heard great things about how much they can help when all seems lost. I can only hope you don’t end up paying the same price I have. That short few months progressed my disease years ahead in terms of brain damage. Good luck! I hope my story helps you somehow!

  • Shelby Comito moderator
    8 months ago

    Hi @bstraiton, thank you for sharing your story here. I am so sorry to hear what you’ve been through! I commend you for taking the steps you did to take care of your health, and I hope you have better days ahead. Thank you for taking the time to share a small part of your story with the MultipleSclerosis.net community. Warmest wishes, Shelby, MultipleSclerosis.net Team Member

  • tramcram
    2 years ago

    I was diagnosed with Ms in 2009. 2 years following my husband’s death. I still work as a registered nurse. I am doing everything I possibly can to continue to work. I am currently experiencing an exacerbation since Dec. It is so tough, but I am determined to continue to work as long as I can. I am fortunate to have excellent insurance. My Aubagio costs me $30 a month copay, for which I am so grateful. I graduate in 3 weeks with my Bachelor of Science majoring in nursing. I started my undergraduate classes in preparation for the future probability of not being able to continue (physically) as a floor nurse. So I made a plan…get my BS then I can get a position that does not require me to be a bed-side nurse. I just pray I can continue to work as long as possible. I am only 51, way too young to retire. I would receive a monthly check of an amount that I currently make in one week, and I struggle financially. I admire all of you and your determination to advocate for services that you are entitled to. I wish I had some answers for you all to help. I know I will be in the same boat someday… I just pray someday is years away.

  • Matt Allen G author
    2 years ago

    I still have no idea what to go to school for. I need/want a degree but IN WHAT? Arg

  • chalknpens
    2 years ago

    When I lost my career as a special education teacher due to increasing cognitive symptoms I stopped the nightly injections of disease modifying drugs. They had so weakened my immune system that all three types of skin cancer bloomed in that last year of injecting. I decided to modify my menu, eat more healthy vegetables, fish, and no meat.

    I am feeling healthier today, ten years after diagnosis. I have had eight MOHs surgeries for melanoma and squamous and basal cell carcinomas, but no chemo or radiation was necessary, for the surgeries removed all of the cancer. I now see a dermatologist four times a year for a full body skin check. Each time he spots another ‘pre-cancer’ site, he freezes it with a cryo-spray. So far, so good. Two years since a biopsy was needed.

    I also see a psychiatrist every ten weeks for depression, a neurologist once a year, an enterologist for monitoring fragile bones due to osteoporosis, infusion nurses one a year for osteoporosis treatment, a primary care doc who keeps sending me for various labs, cardio stress test, etc. Each little visit has a little copayment, and they are small because I am in my late sixties and have group insurance through my teacher’s pension. But my heart aches for those who are still injecting, or taking their ‘new and improved’ oral meds that still attack our immune systems. I wish you all well … the meds did not work for me … they weakened my immune system and invited cancer to bloom. I am healthier today because I eat better. If the winter cold ever leaves, I will get back to my daily walk of at least a mile.

  • Matt Allen G author
    2 years ago

    I think you just made the point I was about to make; SOME people don’t tolerate the drugs and they mess you up but OTHERS basically get their live back. What matters is that you do what works for you because there is no one-size-fits-all solution to his thing

  • Azjackie
    3 years ago

    I went through the same kind of financial problems. I was dropped by AZMedicaid due to receiving SSDI for two years and my SSDI is greater than the income threshold.

    I was automatically enrolled in Medicare part A (hospital) & part B (Doctors) having to withdraw from B unable to afford the monthly premium. I don’t even want to think about the deductible, copay & coinsurance. Notice I didn’t mention part D (medication)? Because it too has a separate deductible, premium, copay, & coinsurance. Who can afford 20% of $11,000/month for the presriptions?

    I feel through attrition the Gov’t does not want to help & would not like me alive.

    I searched my state to find a cash pay MS neurologist who told insurance companies “get out of my business”, I contacted the drug manufacturers for financial assistance, I discontinued wellness exams, I survive on SSDI with $10/month discretionary income.

    My advice for medications is to contact the drug manufacturers. Many have helpful or free plans. I take Gilenya & Ampyra free through the manufacturers. Appx $11,000 for both/month. I completed applications along with my neurologist and provided them a copy of my tax return. They are more compassionate. They want you to continue to take their medication. They want to hear if it helps.

  • Azjackie
    3 years ago

    It is more than cruel to make patients feel like a burden. We struggle enough, don’t add to it right?

  • Matt Allen G author
    3 years ago

    It’s almost like we are being punished for being “such a burden” to them. Funny, my insurance just sent me a letter about how my prior authorization for Ampyra was denied… BLAH!

  • potter
    3 years ago

    Most of my financial stress is from my husband having to work past retirement age so we can have good insurance. All of his friends are retiring but he has no idea when he will be able to. I feel like I have ruined his retirement years. Denice

  • Matt Allen G author
    3 years ago

    I couldn’t imagine… nor do I want to try, I have too much to worry about and get depressed about as it is haha… crap…

  • y71mo1
    3 years ago

    Talk to your doctor most neurologist have someone in thier office,social worker,or someone that can help with meds.,phy.therapy,even with ssi. I have had MS for 11 years, I Got my ssi.disa.on first try,got a grant for my meds, USE YOUR DOCTOR they can be one of your best resources for help.

  • Jewels
    3 years ago

    Matt, I’m so sorry to hear you are going through all of this! Are you not on Soc. Sec. Disability and receiving Medicare? That would cover at least 80% of your medical bills. It has to be just so heavy a burden for you. I was there at one time. I can empathize. I also agree with you…the “famous folks” are NOT the real faces of MS. I’ve said that since the day Montel Williams announced he had it. If I can be of assistance to you with insurance questions or issues, please ask. There’s more help than you think.

  • Matt Allen G author
    3 years ago

    Haha it’s too long of a story but just know, I had SSI taken away, I am battling to prove I can’t pay everything they ever gave me back, I just got denied my second SSI claim, it’s just a mess! BLAH!

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