Help Stephanie Manage Multiple Sclerosis

My name is Amanda. I’ve been a close friend of Stephanie Hansen for 23 years. She’s among the most important people in my life. I’m writing this with Fred, who has been Stephanie’s best friend for 13 years. Stephanie was just diagnosed with Muscular Sclerosis.

A week of bizarre tingling and numbness traveling up her legs prompted her to make an ER trip that went basiclly nowhere. Then there was a doctor's visit with an immediate referral to a neurologist. Stephanie was afraid because of all she didn’t know. No one is afraid of the dark. We’re afraid of what might be hidden there, out of our sight. It might have been something that causes temporary paralysis (Guillain-Barre Syndrome) and hospitalization. That was her best hope. This meant she would be paralyzed for a month, sometimes only to pelvis, and 80% of people come out of it. Her neurologist was convinced that’s what she had as well, and only a mild case of it. She was ready to face that head on and move through it, because while GBS is autoimmune, it doesn’t stick around your entire life.

At this point her muscles were stiffening and locking up when she was walking, her balance was off, and she was experiencing upper body weakness. She had a nerve and muscle test with shockwaves and needles plunged into her muscles while hoping to hear it was GBS. On the same day she had 3 MRIs of brain and spine, and within 2 hours got the call from her neurologist. It was MS.

She has 5 lesions in her brain, and 1 on her spine. She’s fortunate she got a diagnosis inside of a week. While this is no way a death sentence, it has caused a giant perspective shift, and ultimately it has been a balancing act between when to make jokes and feel empowered, and when to sit and stare and cry and grieve the new normal that her life will now be.

IV steroids for 5 days at home has reversed 90% of the neuropathy, and she's looking forward to getting on meds to stop or slow the progression of this disease. Many good treatments are available. She's feeling optimistic and fortunate. She keeps saying how she's so thankful the lesions aren't brain tumors.

She doesn't know the exact medical bills, and jokes that she's able to handle a life altering illness, OR financial ruin, but wasn't banking on both in the same month. It will be months of bills coming in, and insurance adjusting amounts - thank goodness- but so far she's up against quite a few.

*MRIs for which she did cash-pay to lower them to $990

*She spent $527 for the steroid infusions therapy that reversed her loss of lower body sensation

*$198 neurologist visits (so far… there will be more)

*Primary Care visit not billed yet. We’re hoping it will only be around $65.

*ER visit and bloodwork that hasn’t been billed yet

*2 other bloodwork bills are expected

*EMG (muscle and nerve test with the needles and shockwaves, which she says while it's not a super fun experience, she can't imagine it being free or cheap)

*Mayo neurology appointments for second opinion/confirmation on treatment options. Her disease modifying treatment should be covered completely, but we have all learned to believe that 20 minutes after it happens. It would be incredible because it can be anywhere from $99,000 to $150,000 according to a quick google search. Doctors have assured her patients do not come out of pocket for this. We haven’t heard the same from her insurance, yet, however.

I know Stephanie never asks for help, ever. Stephanie is a teacher. Helping is what she does. She doesn’t know how to ask for help when she needs it. She needs it now, and, fortunately, we’re not afraid to ask.

Stephanie was even more hesitant about letting us do this since she doesn't know final amounts yet, and she says she's lucky to have health insurance and knows she'll hit her deductible.

Any little bit helps right now so that she can work at tackling any feelings of defeat that come along here and there without the additional difficulty of trying to figure out how to pay for all this. MS is not a diagnosis you would wish on your worst enemy. It’s not something that is caused by anything anyone does. It’s no one’s fault. It simply exists. It can strike anyone, at any time.

There is, as of today, no cure. There is only a lifetime of potential difficulty to come. Some people manage it to so that you’d never know, others have relapses and flare ups that cause numbness, face paralysis, intense fatigue, brain fog, vision disturbances, muscle weakness and stiffness, and a variety of other symptoms (most of which Steph had during this initial experience), and still others end up in wheelchairs with lasting vision impairments/blindness. Steph is dead set on being in the former group. She keeps saying a lot of people live with this and maintain their health in a way in which you wouldn’t even know there was a problem.

She recognizes so many folks are worse off than she is. But that doesn’t mean we don’t want to help her right now. There’s nothing anyone can really do other than be supportive, make her laugh, and if the ability is there - help with some of these medical bills. If you can afford even a little, it will make more difference than you can probably imagine. This is a time to come together to help someone deeply deserving of our help. Whatever you can give will be gratefully received. This is your chance to help someone in need. We hope you’ll take it. It’s what makes the world bearable.