It is a precarious balancing act when trying to make medications decisions regarding Multiple Sclerosis. There are the initial "to treat or not to treat" questions that most MSers face when first diagnosed. Should I take an ABC injectable drug? Tysabri? Become a drug study participant? What is the "right" choice for me in my current circumstances? Will any drug be effective in slowing down the progression of my disease? Will I be able to tolerate the side effects? The answers to those questions fall somewhere on a broad spectrum for most of us and seem to hold no "right or wrong" in the decision...it becomes a choice of WHAT YOU CAN LIVE WITH versus what you can live without at times.
Then there is the decision whether or not to take something ongoing for chronic SYMPTOMS. Should I try the Baclofen/Zanflex/Flexaril for my spasticity? Will the Lyrica/Topamax/Neurontin help with my neurological pain? What are the side effects of Provigil/Amantidine/Ritalin and will those side effects outweigh the benefit for my fatigue? The list of medications and choices goes on and on...and we choose them based on consultation with our specialists, our past experiences, and a tiny bit of luck thrown in.
And then, there is also that decision whether or not to treat an MS flare/relapse...something we ALL know from experience will not kill us and will most likely resolve itself, with or without treatment. To take the steroids or not? This is the question that has been currently front and center in my own experience.
I have decided to "take the treatment" for this most recent car accident/virus/MS flare and I will tell you why. Some will not support my decision or my rationale for it while others may wonder why I have not made this decision EARLIER in the relapse. It WAS offered to me initially (before the virus became front and center and medically speaking, too potentially dangerous for me to be infused with Solumedrol)...all I can tell you is, today's set of circumstances--waking up to a continued inability to walk without assistance and pain, as well as having to miss yet another day of work--was the final straw on my decision back.
I weigh out many factors when trying to decide WHAT to treat WHEN during the course of my MS and/or relapses. More often than not, my decisions get based upon what I CAN'T live with rather than what I can. If my pain is so great it is affecting every aspect of my life, I request treatment. If my ambulation makes it nearly impossible to take care of my own activities of daily living like toileting, I request treatment. If my vertigo becomes so severe and disabling I begin to focus on having NO future, I request treatment...and so on.
I weigh out carefully the CONSEQUENCES of any treatment as well. If the insomnia/ravenous appetite/jitters of steroids is more overwhelming than the pain or MS symptoms, I refuse treatment. If the nausea/vomiting/fatigue of Interferons leaves me incapacitated more days a year total than ANY RELAPSE, I refuse treatment. If the long term side effects of any medication pose more risk than I might be willing to live with SHOULD I develop them, I refuse treatment.
Currently, I have been missing several days of work because of my viral infection that has now culminated into an MS relapse. I initially and instinctively knew I needed large amounts of rest, which I have provided for myself...not only to kick the virus out of my life, but to also restabilize my MS. I don't LIKE sitting at home with nothing to do but rest, and still I have done just that...because the potential CONSEQUENCE of NOT resting seemed far greater than a few days at home. That decision was almost a week ago, and I am STILL no better than I was on the weekend after my fever subsided.
I am a single, white female (bet you didn't know THAT, huh?!?) who's primary support is myself. There is no income flooding into my home from outside sources other than what I bring home to the table. There is no one standing by to wait on me, fetch for me, carry me to the toilet (and this is also a CHOICE I have made for my life a few years back...not crying in my booze here...I decided this was a better life for me!), or fix my meals. And, when "well", this is a wonderful arrangement...LOL I make my own money, I spend my own money...on ME...and of course, my cat (who is as useless as tits on a bull when it comes to caretaking me).
I have to always be mindful of just what impact my MS/illnesses/relapses are having on my employment situation and just what I can AFFORD (consequences again) to take for granted and what I cannot...second guessing what my BOSSES can afford to take for granted as my employer and what they cannot also weighs heavily on my mind. And believe me, I have a WONDERFUL employer who has always been very supportive of my absences...there are unfortunately, LIMITS to that support...both physically and financially, which is no fault of theirs or mine.
I am a single, white, female who is generally highly energetic (bet you didn't know THAT about me either. LOL) and requires a certain amount of intellectual stimulus to remain sane. Most of the time, that stimulus comes from my friends and my job. When I am in the throws of my MS/illnesses/relapses, I find myself dipped in discouragement that I might ever get better...doing the "just accept it" dance of complacency...this wreaks havoc on my mental stability and I begin to close off others from my world in an effort to "hide out". And, the more I hide out, the more discouraged I become...a vicious cycle of self-defeating emotional turmoil.
For all of these above reasons, I am choosing to TREAT my relapse at this time. It is not just one of the above reasons, but a combination of them all that has prompted me to request and comply with Solumedrol. And I share all of these reasons with you for a "reason", too. It is my hope in sharing the multitude of issues in my personal balancing act, that there will be something in my situation that might resonate in YOU as you decide what course of action(s) to take in your MS. "We" have MS, but "we" are all so very different in how we deal with, understand, react, work with the disease and there is no ONE right or wrong answer...the key is to find YOUR balance...and stay on the rope...
What considerations do YOU weigh in when making treatment choices for your situation and MS? Care to share some insights?...hint, hint...