The Cost of MS

Do you need to vent? I do. I have just about had it with all the problems that having multiple sclerosis brings. And if the physical issues weren’t enough, the mental anguish caused by all the obstacles MS throws my way makes me really crabby.
Some of these hurdles are ongoing, like the financial havoc MS creates in my life.
I am completely disabled, but I am ineligible for Social Security Disability Insurance. Even though I have worked and paid into Social Security since I was 16, the quarters that the Social Security Administration looked at were more recent—the years when I was home caring for our children, and not earning income. Oh, well. If I live to be 62 years old, I can collect early retirement benefits.
I also don’t qualify for Medicaid because my husband’s income is too high. But is it really? Not when we figure in all the expenses of MS, such as my fabulous aide who comes every day to help me shower, dress, get to the bathroom, do laundry, take me to appointments … you get the picture. We pay for this help.
We also pay for health insurance and right now my health insurer is refusing to pay for my MS treatment. It allows 20 physical therapy visits a year, of course, with a co-pay. But 20 physical therapy treatments per year for a patient with MS are hardly adequate, so we pay privately for more. Then I need a customized brace for my ankle, but the co-pay is $450. My daughter also needs braces on her teeth, but we have no dental coverage. So my brace will have to wait.
Between extra help, co-pays, modifications to our house and the ever-increasing costs of medical insurance, MS has just about broken us financially. We now live paycheck to paycheck with an ever-growing stack of bills. So I’m really, really crabby. MS stacks the cards and it feels like everyone else is holding them. Something must be done. I’m thinking about that. But I’m also thinking about how beautiful my daughter’s smile will be.
For questions about SSDI or Medicaid, or to ask about financial assistance, call an MS Navigator at 1-800-344-4867, or visit
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Susan Skoney, Blogger

Susan Skoney was diagnosed in 1999. She lives in western New York with her husband Michael and daughter Hannah. She worked many years in public relations and advertising, and has just started writing about her MS in the last few years.