Are you feeling not right lately? Have you been experiencing blurred vision; constipation; diarrhea; dizziness; drowsiness; dry eyes, nose, skin, or mouth; headache; indigestion; nausea; stomach pain; taste changes or trouble sleeping. How about difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue; confusion; difficult or painful urination; fast or irregular heartbeat; fever; hallucinations; mental or mood changes (eg, agitation); seizures; swelling of the hands, ankles, or feet; vision problems?*
If you answered yes to any or all of these, you might be experiencing the symptoms of symptom management. Don’t worry, while you can’t necessarily be cured of the MS symptoms that ail you, or the side effects that plague you, you might feel better when you read the stories of another individual, who just like you is symptomatic while she tries to manage the symptoms she must live with every single day. At times it’s grueling; but read on, you may, or may not, experience the joy found in common ground.
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When you have MS, the label alone is hard to cope with; the uncertain future, the list of possibilities, the treatment decisions. It’s a constant emotional, intellectual tornado. How any of us can think clearly while juggling these realities continues to blow my mind. But let’s just say you have managed to negotiate those realities. You now have to deal with the symptoms that don’t respond to your injectable med.** The disease modifying drugs slow the progression of MS, yet often don’t help with little things, like say, bladder control. And bear with me for a minute, but that is just wrong! Considering these meds need to break skin with every dose, you would think they would address more than the future! I mean c’mon!
I was diagnosed in 1988 when there weren’t any disease modifying treatments and therefore little to feel hopeful about. The only drugs available at that time were those used for symptom management, and they seemed like a shot in the dark – a guessing game as to whether or not they would work. So, I suppose I shouldn’t complain.
Most everyone can recite the side effects of drug therapies in the order that those ridiculous commercial rattle them off. And while Pharma is required by law to list any and all possibile side effects associated with taking their drug, the list is full of examples that fuel anxiety and make it that much harder to make this important decision. Trying to weigh the potential benefits of these meds against the possible side effects they might cause, opens a Pandora’s box of tradeoffs. And we have to keep in mind that the side effects may not even occur, or last long. To further complicate matters, it may take a while to determine if the Rx works at all. Quite frankly, it’s hard to keep positive about any particular approach when the what-ifs illustrate the worst-case scenario - inducing nightmares that have a voice over of legally required disclaimers.
Let me tell you about my experience with a particularly challenging MS symptom, one that doesn’t make great cocktail party conversation. I have had bladder control issues since 1991. I like making that announcement publicly... what could be more personal and potentially embarrassing? I’ve put it all out on the table and there is nothing more I can say to feel self-conscious about! Oh, and one more thing: I also have an inability to pee when given the opportunity. (Oh, I’m loads of fun on road trips!) So, the drug I take to manage incontinence is Ditropan. To deal with the inability to void (Doesn’t pee sound better? It’s much friendlier I think.) I self-catheterize. What at first seemed like the most horrible proposition, turned out to be very liberating. So with that Ditropan/catheter ensemble, I must take Macrobid prophylactically to prevent infections. (Luckily I have no side effects from that one!)
I know what you’re thinking, “Hey... she’s got it under control, she’s got the catheters, she’s got the control meds... What is she complaining about?” Well the Ditropan doesn’t work 100% - so even though I have the artificial capacity to empty, and a much-improved ability to hold it, I also have to be strategically placed near a bathroom at any given moment. (By the way, I have a map of all the bathrooms in NYC and throughout Northern NJ using a Zagat’s style rating system - let me know if you need one! )
On top of all that I also have to live with very annoying side effects of the drug that doesn’t work 100% of the time. Ironically it's dry-mouth, which has me wanting more water than the recommended 8 cups per day, adding greater urgency to the whole process.
So this little tale is of just one symptom and two drugs. I have many others for which I take more meds with different side effects and interactions. Because at times, this juggling act is beyond my intellectual/emotional capabilities; I’ve decided to seek out the advice of an advanced practice nurse in psychopharmacology. She helps me navigate the map of my prescriptive needs and provides soothing conversation that gets me through the night. Although, come to think of it, I believe I have a drug that does that too!
NOTE: This essay describes one individual’s experience with MS and medications. There are many ways to approach symptom management. This slice of life is in no way a prescription for one approach or another. Please use accordingly and do not mix with other substances of contrary attitudes. If you feel dizzy or nauseas after reading this, please contact your doctor or drink a flat coke. That always works for me.
* Actual potential side effects as listed for Ditropan.
** While many options for treatment exist, I’m writing about my experience with traditional medicine. Although I exercise, do yoga and have experimented with special diets, my first stop is at the town pharmacy.