You’ve just been diagnosed with MS. You’ve heard about the disease (“OMG, I’m going to be in a wheelchair”). You’ve heard something about the medications that are now available for MS, but know little about them. You’ve seen other people with MS, but how does their course relate to yours? What can you do to prevent disability?
These and many other questions crowd in on you, and it all seems overwhelming. You need to spend more time with your neurologist or nurse specialist, but don’t know where to start. Hopefully the following questions to ask will be a guide for you...
You’ve been diagnosed with MS and started on a disease-modifying therapy. At a follow-up visit, your neurologist asks that you do another series of central nervous system MRIs. You ask, “Why? Is it really necessary? What would you do if there were new lesions?” These questions are excellent and reasonable. The answers however, are not straightforward.
There is no cure for MS at this time. That said, starting a disease-modifying therapy is most important. Responses to disease-modifying therapies vary greatly. In some individuals, the response is excellent, with no evidence of recurring disease. In others, new lesions and even attacks may occur despite treatment. Not every new lesion is associated with an attack, and new lesions can gradually accumulate silently with no immediate change in course. However, increasing tissue damage may result in increasing disability over time. Thus, monitoring your central nervous system with MRIs after starting a disease-modifying therapy is essential to determine your response to treatment...
“Do I really have to have another brain MRI? It’s really very expensive, and I don’t know if it’s safe?”
These are totally understandable concerns. Being placed into a narrow, noisy tube for what seems like forever is certainly unpleasant. However, understanding the role of central nervous system MRIs in diagnosing and managing the treatment of MS may make the experience somewhat more tolerable.
There is no avoiding it. Seeing a neurologist for evaluation of a diagnosis of MS can be very stressful. However, understanding what is needed to make a diagnosis may, at least in part, ease some of the anxiety.
Even with all the latest electronic and laboratory studies, an MS diagnosis is still one of exclusion. Unlike a positive biopsy for cancer, there is no single finding on history, exam, or diagnostic study that is unique, or only found, in persons with MS. Thus, making a diagnosis of MS remains one of excluding other diseases that can mimic MS. While this may seem easy, a recent paper from two MS centers reported that 1 out of 5 persons sent to the centers with a diagnosis of MS did not have this disease.1 More than 100 MS “look-alikes” have been described, but most are very rare, and only the most common ones are usually looked for. These include illnesses such as diabetes mellitus, lupus, Sjøgren’s disease, migraine with aura, high blood pressure, brain tumors, blood vessel inflammations and infections...