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The Parallel Universe: What would life be like with MS and no insurance or help?

In my parallel universe - without resources, connections, insurance - I don't think I would have been able to climb so many mountains.

Sometimes I imagine myself in a parallel universe, as someone with MS who lacked resources and insurance at the onset of symptoms. What would my life look like? Would I be able to walk, to work, to drive? Would I be drowning in debt, choosing between paying rent or paying for my medication? Would I even have a diagnosis or be dismissed by doctors and labeled with "anxiety," "depression," "nonspecific dizziness," "nonspecific numbness," "neurologic symptoms of unknown etiology," "hypochondriasis?"

 

In my years as a physician in community clinic settings, I saw hundreds of uninsured patients with challenging health conditions. Together we struggled to navigate the complex web of services available, but we often came up short.

 

When I developed symptoms of MS almost nine years ago, I had vague, nonspecific complaints. Dizziness was the most notable one, but I couldn't describe it well. I was fortunate to see a neurologist and then an ear, nose, throat doctor – both personal friends - within a week. I got an MRI and had my diagnosis in nine days.

 

But what if I hadn't been a doctor, well-connected and insured?

 

I have no way of knowing for sure, but I suspect my diagnosis would have been missed, possibly for a long, long time. Many people go months or years with symptoms of MS and no diagnosis. Without insurance and ready access to care, I imagine I would have ignored my symptoms for as long as possible.  Like many of my patients have done over the years, I would have waited until I was desperate, panicked, or incapacitated before seeking care.

 

When I did finally decide to see a doctor, I may have ended up in an emergency room, waiting hours to be seen, shuffled through an unfriendly system, and still left me without a diagnosis, but with a hefty ER bill.

 

I could have ended up disabled from MS, unable to pay the ER bill, unable to work. Eventually someone would have ordered an MRI – maybe during an expensive hospital admission for an MS complication – and the diagnosis would have revealed itself. But then, would I have been able to afford the medications needed? Would I have progressed from relapsing, remitting to secondary progressive MS (which is often more severe and much harder to treat)?

 

I feel certain that my brain MRI would have a lot more white spots and black holes – those tell-tale signs of damage from MS – if I had not received timely medical care.

 

I frequently share my story, especially my presenting symptoms and diagnosis, with other doctors and nurses, hoping that the possibility of MS will come to mind when they see a young or middle-aged patient with unexplained neurologic symptoms. I encourage EVERYONE, no matter how healthy, to get health insurance – and keep it, no matter what. I also urge those who are struggling with mysterious health problems to find a good doctor who is persistent and curious, who will hunt down answers and resources.

 

I give thanks for having the good fortune to receive high-quality care for my MS and to lead a healthy, productive, and fulfilling life. But more than anything, I long for the day when every single person receives the health care they need and deserve. 

 

I encourage others to share their stories below, especially challenges accessing the health care system or reaching a diagnosis of MS or another condition.

 
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