- Posted March 17, 2014 by
Porter Ranch, California
This iReport is part of an assignment:
Living with a rare disease?
Putting A Face On An Issue
By Carl Petersen
Shortly after my wife and I had met, we had what I now refer to as our “clearing the calendar” phone call. We knew individually that we had hit it off and were ready to take it to a higher level. This involved sharing our feelings and then syncing our complicated calendars. However, before we could do this, Nicole told me there was something that I needed to know first.
For some reason, the first thought that quickly crossed my mind was that I should have never watched the Crying Game. After all, what other plot twist could justify the gravity in her voice? I already knew that she had triplets and that two of the girls were on the autism spectrum. If I was willing to accept these challenges, what else could she possibly tell me that could cause me to run?
And so she cautioned me, “Before we go any further I need you know that I have Multiple Sclerosis. M.S.”
“Ok,” I responded. This was was followed by a short period of silence as I tried to process the information. The truth was that there was not much to process as I really did not know much about this condition, how it affected her or what I would need to do to become part of her life. However, with estimates that more than 400,000 Americans have been diagnosed with M. S., her story is not entirely unique. (1)
While she would not be diagnosed for another seven years, Nicole started having chronic medical problems when she was 16. It was not something that she could adequately express, but she did not feel “right.” Since doctors could not readily diagnose a problem, she was told that it was in her head. The word “hypochondriac” was thrown around a lot. Looking back, this served as an important milestone in learning the lesson that we all need to be advocates for our own health care and given the tools to do so.
Stress and M.S. are like oil and water and at 21 a particularly stressful period resulted in her completely losing feeling in one of her legs. With no other cause readily apparent, her doctor told her that it was probably a pinched nerve and would go away by itself. It did and another chance at diagnosis was missed. Visual disturbances, which made reading difficult, continued.
Two years later Nicole experienced a sudden increase in the severity of her visual problems and was finally referred to an opthamologist. With her previous medical history, her symptoms should have sent up a red flag that she also needed to see a neurologist, but the opthamologist did not see it. Instead, he attributed the problems to a medication that she was taking and had her stop. As the effects of the flare up ended, so did her visual problems. Unfortunately, they did so just in time to make the doctor think that his diagnosis was correct.
It would be another six months before the condition would flare up again and this time it did it in such a way that it could not be ignored. Once again it was brought on by stress; this time Nicole lost all feeling from the chest down. Instead of the numbness that I would imagine, feeling was was replaced by a pain. It was not a pain that pointed to a particular area, she just hurt. Unable to deal with this pain as she waited for a referral from her doctor she insisted on going to the emergency room.
The doctors in the ER understood the severity of the situation enough to order a spinal tap to rule out any bacterial infection. Other than that, all they could do was give her a shot of demerol and send her home to rest. After the results of the spinal tap proved negative, they had her come back for an MRI. For all the talk about our healthcare system spending too much on unnecessary tests, doctor after doctor had failed to order the one that could have given Nicole a reason for her problems. After just 45 minutes, the lesions on her spinal cord and brain were found and she was diagnosed with M. S.
Finally receiving a diagnosis provided a great deal of relief as there was now a reason beyond the problems and a plan could be developed to lessen the symptoms. However, this would not come without costs. The immediate flare up was tamed with concentrated doses of steroids, which by themselves can cause a toll on the human body. Additionally, the first maintenance drug that she was prescribed was taken once a week and would knock her off of her feet for the entire weekend. The drug she takes now can cost as much as $2,700 per month. Luckily, once we were together she was able to get insurance through my plan since regular insurance plans would not accept her for individual coverage in the days before Obamacare. The drug manufacturer also helps cover some of the co-pay through their patient assistance program.
Even with the maintenance drug helping to reduce the number of relapses, they still do occur, especially in times of stress. Hot weather is also a factor resulting in air conditioning bills that are higher than what other families face. A medical allowance from the utility company does reduce some of these costs. Problems walking, fatigue and pain are issues between flareup events.
While Obamacare has placed many regulations on the health insurance industry to ensure that the insured receives value for their premiums, Nicole’s experience has shown that these regulations do not always go far enough. For example, it was found that one medical device would assist her walking and greatly increase her mobility. Unfortunately, the insurance company rejects this finding and will not approve payment for the device, going against the requests of both Nicole and her doctors. They will, however, pay for a motorized scooter. While this would help reduce her fatigue, it would not help her fitness or enhance her continued independence. More must be done to make sure insurance companies pay for all health care that is needed and not just what is cheaper for the company.
M. S. affects each patient differently and, therefore, each person has a unique experience. To make things even more interesting, the effects are constantly changing. This uncertainty has provided a lesson to Nicole that would benefit us all - you never know what tomorrow will bring, so if you are feeling good today, make the most of it.
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