Over the weekend you had a strange numbness-like sensation on the entire left side of your face and head. It was puzzling but you tried to ignore it thinking it would go away. It did not. So, on Monday you called your family doctor and got an appointment for the next day.
The day of the appointment, the doctor makes some basic observations, draws blood for a lab test, talks with you about what you have been experiencing, performs a limited physical examination then sits down next to you.
He looks you straight in the eye and says “I would not say this to most of my patients but you are not the kind of person who freaks out over things like this.” Evidently he has not-so-positive news to share! “It could be caused by a number of things and among those is MS. I’d like you to see a neurologist.”
He is correct. You did not freak out. You did not even flinch: although you find yourself a bit perplexed and somewhat confused. Yes, you think you know what MS is. It is Jerry’s Kids, right?
You go home and have very little, if any, discussion with your wife about what the doctor found out about your health. That evening you realize MS is multiple sclerosis. Jerry’s Kids have muscular dystrophy. Still, you know virtually nothing.
Before seeing the doctor you had searched through the hidden recesses of your mind in a fruitless effort to explain the cause of this malady.
THE UNEASY SEARCH FOR THE CAUSE
As a kid in the summer, you had often ridden your bicycle – weaving in and out – behind the slowly moving truck that was spraying to kill mosquitos with a DDT fogging machine. Had that messed with your immune system?
Was it that weed killer you spent last weekend spraying on the lawn? Was it the afternoon you spent in the closed-up garage brushing on that semi-gloss varnish finish on the jewelry box you made for your mother-in-law for Christmas?
What is this?!
Your next concern is to determine what to do. Sounds simple but this is the on-ramp and you are hesitant to enter. You can research multiple sclerosis on the web but if you do, will you start to imagine all sorts of symptoms because you read about these?
You think you can ignore the doctor’s potential diagnosis since you really do not seem to be impacted much at all: you have not experienced any “disability” and there is no set pattern of symptoms or a progression of symptoms. It is probably not MS, although you know virtually nothing.
Then you see the neurologist and an MRI of your head and neck is ordered. Soon after, the report comes back to you that your brain has several lesions (white spots) – all of which indicate the possibility of multiple sclerosis. The neurologist describes to you the myriad of treatments, the drawbacks and benefits and asks you to think about which of the drugs you might be most willing to try.
Do you want a daily injection? Would you rather have a monthly infusion? How about a twice daily pill? There are more options and none are good from your point of view.
In a scene from the 1989 film, Indiana Jones and the Last Crusade, the knight guarding the Holy Grail says first to Walter Donovan, “You must choose . . . but choose wisely.” Determining what you should do: what – if any – medication to take is perhaps the most perplexing and frustrating point in this journey. You are alone in this decision. The doctors, your family, your associates, everyone has an opinion but no one has the definitive answer. You hope to hear from the knight (doctor) that “you have chosen wisely.” Unfortunately, Donovan “chose poorly” and his “skin turns brown and leathery and stretches across his bones until it splits.” [See www.theRaider.net]
Yes, this is the dilemma.
MS has no cure but there is hope that you can impact the course of the disease – especially the relapsing/remitting form of MS. When taking any of the FDA approved MS medications, it is unfortunate that all the manufacturers can only assert that those who take the medication have “fewer MS relapses than those who took an inactive placebo.”
Really? That’s it!? A discouraging fact when you think about it but encouraging if you think about it longer.
It is true that at least one FDA approved drug (Tysabri) does carry the risk of contracting progressive multifocal leukoencephalopathy (PML), if you already have the JC virus (JCV.) However, unlike Walter Donovan, the decision to embark on an FDA approved treatment is extremely unlikely to cause you to shrivel up and die!
The bottom line: Each of us has a different path and course of action to take in managing multiple sclerosis. There are no pat answers. What you experience will be similar to what others experience BUT it is unlikely that anyone else shares all of your symptoms and experiences.
Your MS is as unique as a fingerprint. The treatment that works for you might negatively impact someone else.
It is yin and yang and a reason to be hopeful.
NOTE: The above posting is based on a compilation of the experiences of several people with MS and is not an exact recounting of any actual event.