How Much Did You Learn About Your MS During the First 100 Days After Diagnosis?
During the first 100 days after your initial MS disease event, stress can become too much to bear alone. MS challenges who you think you are and what you thought you knew about yourself and the world. For example, you might think of yourself as a giant super-fit muscle that can carry burdens much heavier than your own weight. When your first MS symptoms push you off-center for weeks and months, however, the stoic you that seldom confides in anybody about anything suddenly feels grief, fear and anger pressing at a usually calm surface. We hear lots of anxiety pour out in MS forums from personalities of every stripe, hitting the same notes of worry, confusion, and sadness. Was your voice among them?
Mine would have been had I known enough to find a community outlet. My medical team never mentioned its existence and I didn’t know enough to ask. So I encapsulated my terror and swallowed it with a little water, hoping it would pass through my gut intact and get excreted like every other indigestible nugget I’ve swallowed. Instead, it shape-shifted into the low rumble of distant mortar fire. I hid in my bedroom and waited for a siren to blast an ALL CLEAR—but it never did. I soon realized that metaphorical rumbling was here to stay.
Surviving those shattering first 100 days is a harrowing, short-term endurance test like no other. Although MS is not terminal, we all suffer little deaths for which we need to grieve. We also need to know what changes are MS-related, what’s causing them, whether they’ll persist, when to call the doctor, whether there are treatments for such changes, and where we can go to get information and clarity. Here’s a short list with some answers I found along the way:
What symptoms are normal for MS, what could be drug-related and how can I tell the difference?
Simply put, you can’t know for sure. That takes years of experience, and even then it can be iffy. Ask the well-informed old-timers that have knowledge beyond their own personal experiences. In fact, ask old-timers about everything. Experience and research can provide the most valuable capital of all. Patient leaders who do deep research can keep you from wasting your time by directing you to their well-cultivated sources of good intel. And, if your neurologist employs a nurse, they can be great resources for such questions if the doctor isn’t available to see you or take your phone call.
How long does it take for symptoms to remit?
If you’re still in the first 100 days of your first-ever relapsing-remitting MS event, you might not know that it can take at least three months for symptoms to completely resolve (if they resolve at all, that is. No guarantees there). Moreover, many symptom medications have some temporary initial side effects, so it might be hard to tell whether MS symptoms are getting worse or a medication is making you feel crappy. For example, the muscle relaxer baclofen can cause a drunken feeling or drowsiness at first but will soon wear off.
If you’ve started a disease-modifying drug (Gilenya, Tysabri, Tecfidera, Avonex, etc.) these treatments come with an array of side effects, too. Call your prescribing physician right away if they are really distracting you. Also worth noting: your pharmacist is actually the top expert on drug side effects. Feel free to call your drugstore and speak directly with the lead pharmacist. Do not stop taking the drug and not tell your doctor.
I’m taking steroids. What will that do to me?
If you are taking a corticosteroid treatment such as prednisone or Solumedrol, you might not know that these drugs can cause mood swings, acne, stomach upset, excessive hairiness, psychosis, and potentially more effects besides. Although there is no evidence that people literally change into werewolves, you might feel like you are. Put away those silver bullets, your doctor can find an alternative that is not so final. If you have swelling, hives, and breathing problems, it might mean you are allergic and that is an emergency. Go to the ER immediately. Inform your prescribing physician as soon as possible.
Is there any reason not to communicate an issue to my doctor?
Not a one. Your doc needs to know what’s going on with you and you need to practice reaching out for help. Only your medical team knows your medical history, what drugs you’re taking and how those meds interact with each other and with any others that might be added later on. This includes over-the-counter pain relievers, allergy meds, supplements, vitamins, et al. It’s also possible to develop a separate medical problem during an MS relapse. For clarity, your doctor needs to examine you and possibly run some tests to find out what’s going on.
When to go with your gut and when to go against it.
If you don’t feel right/safe, do call your neurologist, you might need a dose adjustment or if not that, maybe a little reassurance. Try to override your embarrassment/pride/shyness and reach out regardless. Every call will result in an education for you and a note in your medical record that will be useful to your doctor in a later appointment. Best to err on the side of sharing too much information than not enough.
If you don’t get satisfactory answers from your doctor (or none at all), what other resources are out there?
- Here are links for the major MS organizations: http://www.nationalmssociety.org/, msfocus.org/, www.mymsaa.org/. All have phone-in support that allows you to speak directly with a patient expert about your issues, even the most personal ones.
- Most drug companies that make your medications have a patient information site. Search the pharma name and follow the links.
- Drop in on MS patient forums online and look down the list of topics that are relevant. Post a question when you feel ready.
- Come to us here at MultipleSclerosis.net and ask an expert anything. If we don’t know the answer off the top of our heads, we’ll research it and get back to you with a quick turn-around.
Not only are these insights valuable for new patients, we all have issues crop up throughout our disease journeys and sometimes need to be reminded of our choices for support and information. As always, you are not alone with this disease.