Written often it happens How severe it is

Written by Nancy Lovering   When you have MS, it’s important to be able to communicate well with the medical professionals who are taking care of you. The questions that you have are important and their answers can help you manage your condition.   It’s normal for anyone with any condition to forget their questions at appointment time. Since changes in cognition can be the first sign of MS, you may be even more likely to forget the things you wanted to ask about. Keep a journal to write down your questions as you think of them. Try a paper notebook, or a cell phone app.   You might have question from your own personal experience or from something you’ve read. Log each one as it occurs to you and accumulate a list. Leave room to write down the answers you receive. Find a system that works for you so that you’re prepared for each appointment with your doctor.  1.  Anticipate what your doctor will ask you When your doctor asks for information, the more accurate your answer, the better. Make note of what you’re asked at each appointment to see if it’s anything you should be tracking for next time. An example is your symptom severity. Your doctor will want to know if your symptoms are subsiding, worsening, or staying the same.   2.  Ask about new symptoms If you have experienced something new and think it might be a symptom of MS, make note of it and write down as much detail as you can, such as: When it first appeared How often it happens How severe it is If it seems to be connected to something else  For example, new difficulties with walking might happen only intermittently and on days after you haven’t slept as much. A detailed description of a gait problem can help your doctor decide on the best strategy or assistive walking device, if needed, for your situation.  3.  Discuss medications and supplements Keep track of medications you are taking and any side effects that you may be experiencing.  The same is true for any vitamins you are taking, herbal supplements or significant changes to your diet.  If your doctor suggests that you try an approach like taking fish oil or vitamins such as D and A, keep a record of the frequency and dose to see if any improvements coincide with the supplements. Ask your doctor first before trying anything new, since some supplements and herbal remedies can make symptoms worse or interfere with your medication.  4.  Clarify when to call the doctor  If you experience a new symptom, or if an old one returns and lasts longer than a couple of days, you may be having a relapse. Other times you may have what is called pseudo-exacerbation, which is not a relapse but is instead when factors such as fatigue or PMS make you feel worse. Ask your doctor to clarify which situations warrant an appointment. You can treat relapses with steroids, but there are side effects. Even though steroids will put you back into remission faster, this treatment doesn’t change the long-term progression of your MS. If you decide against steroid use, your doctor might still want to be notified of any symptom change to more closely monitor your condition status. 5.  Review treatment options There may be something else you can be doing to manage your symptoms and slow your disease progression. Ask your doctor if there is more action you can take. For example, if you don’t currently exercise, get clearance from your doctor to start. Read about treatment as much as you can between appointments and take notes. Write down any questions that you think of and bring them to your next doctor appointment.  6.  Ask about referrals to related specialists If you have an MS diagnosis, chances are you already see a neurologist in addition to your family doctor. Ask if there is anyone else you should see who can help you, such as a nutritionist, neuropsychologist, psychologist, speech-language pathologist, physical therapist or personal trainer.  Asking for this information can prepare you for what might lie ahead, as well as prompt the start of another treatment type.   The Takeaway The questions you have about your MS are important. Keep a journal and record anything that comes up between appointments so that you can keep your doctor informed of your condition. Write down all your questions so that you remember them at appointment time. Keeping the lines of communication open between yourself and your doctor can help you manage your condition better.