A. Scott Nielsen MD, MMSc
Virginia Mason Multiple Sclerosis Center
This is a difficult question to answer because what is a "typical" case of MS?
The time from the first symptom of demyelination to presentation in a doctor's office is going to depend heavily on where in the nervous system the injury is occuring. For instance, if the injury is occuring in the pyramidal system (this is the circuit that involves strength and movement), then patients are much more likely to seek care early as opposed to a patient who experiences their first attack of MS (that produces symptoms) if it affects the sensory fibers (for instance, if there is a small area of numbness or tingling). This is particularly the case in young adults who may rationalize symptoms away as something minor because MS (or any chronic illness) is not supposed to affect us in our most productive years.
With that said, there have been some researchers who have looked into the time from first symptom onset to diagnosis. A group in Spain (Fernandez et al., Journal of Neurology 2010; 257(9); 1500-7) did just this and found that the mean time from first symptom to diagnosis is approximately 2.08 years, and the largest contributor to this delay was patients who waited an average of 19.2 months from first symptom to going to the doctor for the problem.
Since the diagnosis of MS is a clinical one (ie, we do not have a blood test--or any other test for that matter--that can definitely render an accurate diagnosis), there will be occasions where the diagnosis may be uncertain for quite some time. Since MS can be mimicked by other disease states (in particular, diseases that are treated with therapies different than the MS therapies), it is very important to "get it right" to the extent possible. While this can be frustrating for patients who struggle with the uncertainty of a diagnosis, it is too for the physician. Obviously, more research is needed to identify biomarkers of the disease that can help us diagnose sooner (and with improved accuracy). This is imperative as clinical trial evidence indicates that the sooner a person with MS is treated, the better the long-term outcomes.
A. Scott Nielsen MD, MMSc
Virginia Mason Multiple Sclerosis Center
Here is My Question:
I have RRMS. I don't want to take medications. What's the biggest risk if I don't?
Disease modifying therapies (DMTs) for MS are 1) expensive, 2) associated with a variety of side effects and potential safety risks, and 3) are partially effective. With this understanding, your question is one I hear frequently in clinic. The major risk of deferring DMT for relapsing-remitting MS is an increased likelihood of clinical relapses in the future that can disrupt your day-to-day function, and short- and long-term disability. Let me explain…
We have a great deal of natural history data on MS (this is information on the average experience of patients with MS who were not exposed to therapy). This information is available to us because it wasn’t until the mid-1990’s that we had our first approved DMT for clinical use. What we have learned is that patients with early and frequent clinical relapses are at a higher risk of developing walking disability (for instance, the average individual with greater than 5 clinical attacks in the first 2 years of MS will need a cane to walk by 6 to 7 years into their disease course; while the average patient with 0 or 1 clinical attack will need a cane by the 20 year mark). We have also learned that the initial MRI brain scan after the first clinic event of MS can tell us about the likelihood of disability in the future—the more scars of MS that are seen on this first scan, the greater the probability for disability sooner rather than later. Keep in mind that these numbers reflect MS patients who did not have DMT options.
At the time of this blog post, we have ten FDA-approved DMTs, with more being reviewed. In nearly every case, these therapies have repeatedly shown effectiveness in 3 main measurements: 1) less clinical relapses or attacks compared to placebo, 2) reduced number of new, enlarging, or enhancing scars on the brain MRI scan, and 3) a reduction is short-term disability compared to placebo.
Critics have long pointed out that the DMTs are not cures, are expensive, have variable safety risks, and have not been proven to make a difference in the long-term. While it is true that all DMTs are partially effective—meaning that the data does not show that they cut down new relapses, MRI lesions, and disability by 100%—they have recently demonstrated effectiveness in the long-term. In 2012, a paper was published in the journal Neurology that presented long term follow-up data on the first approved DMT called betaseron. This 21-year study followed the originally randomized study participants (an early treatment group that was randomized to betaseron from the beginning, and a late treatment group that comprised individuals that were originally randomized to placebo but were given the opportunity to take betaseron after the initial clinical trial ended 3 years later). This paper showed that there were more people alive from the early treatment group 21 years later compared to those in the late treatment group. You can read more about this at http://msj.sagepub.com/content/19/5/522.full. This study confirmed our suspicions that DMT does help in the long term and does underscore the need to treat early rather than waiting—because there appears to be a window of opportunity to alter the course of the disease for the better.
Many of the barriers to initiating a DMT for relapsing-remitting MS patients have been removed. There are financial and co-pay assistance programs in place to make DMTs affordable for patients, risk mitigating protocols for DMTs, and experienced MS clinicians that can help you in choosing a reasonable DMT that can fit your goals and lifestyle, and outline a plan to make sure the medication is doing what we expect it to do and make it tolerable for the patient.
While the majority of my patients ultimately decide to start a DMT after considering this information, some choose to defer treatment. That is certainly each individual’s prerogative. Before making the decision, everyone should recognize the fact that we do not yet have a therapy that can reverse or repair tissue damage already incurred due to MS inflammation, nor do we have a therapy at the moment that reverses sustained disability. What we are left with are DMTs whose purpose is to get in front of the disease and impact it for the better, and hopefully avoid significant disability in the future.
The medical information and opinions on this site are provided as an information resource only, and are not to be used or relied on for any diagnostic or treatment purposes. The information and opinions expressed do not create any patient-physician relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.