Are the actual Progressive MS patients higher than the diagnosed patients


1Progressive forms of Multiple Sclerosis including SPMS and PPMS are more characterized by increasing disability in the patients and less by the acute flare-up of symptoms unlike in the case of more prevalent RRMS patients. It is believed that ~30% of the MS patients are SPMS diagnosed patients and ~10-15% of the MS patients are PPMS patients. However, are these diagnosis numbers really correct? Do they precisely represent the actual number of Progressive MS patients present across the Globe? Let’s try to understand this in greater detail.

There can be multiple reasons on the basis of which it can be argued that the actual number of progressive MS patients might be much higher than the diagnosed patients. Some of the reasons can be discussed as mentioned.

Hard to Diagnose Progressive MS


Progressive MS is really hard to diagnose. Specifically, in the case of SPMS, physicians would have to carefully monitor the patient over a long period of time to make sure that the patient has really progressed to the progressive stage. Even after long monitoring, there is a chance of a relapse happening which might again confuse the physician, whether the patient has actually progressed to SPMS stage or not.

Chance of Misdiagnosis

As mentioned above, with progressive forms there is always a chance of misdiagnosis. The physician might diagnose progressive MS in the patient based on his/her historical examination and worsening disease activity as visible on MRI scans, however, the patient might experience a relapse in the later stages, thereby indicating that the patient is still having Relapsing-Remitting form of MS.

Fear of Failure

There is a great research that has happened in the Relapsing-Remitting form of MS and there are over a dozen Disease Modifying Drugs available for RRMS patients. The physicians are usually very comfortable in prescribing one drug or the other and even switching the drugs if the current medication is not helping the patient.

However in the case of Progressive MS, there are not many approved therapies and hence physicians, once the patient is Progressive MS patient, do not have many options to prescribe from. This leads to a fear of failure in the physician and the doctors usually think, what now? What should I prescribe, to the patient, which would stop the disability progression? There is nothing much I can do now. Probably I can keep the patient on one of the Injectables which would keep the symptoms under control and would not have many side effects to the patients. This fear of failure leads to some physicians delay diagnosis of Progressive MS till the time patient is completely on a wheelchair.

What Next

So in conclusion, there is a great chance that some of the patients who are already progressive MS patients are still not diagnosed and the diagnosis rate of SPMS and PPMS patients are underreported. The definition of Progressive MS has somewhat been modified to the patients who are completely on a wheelchair and have lost their ability to walk.

However, there is a hope for the increased diagnosis of Progressive MS in future because of the fact that a lot of new drugs are in pipeline for Progressive MS patients and the regulatory bodies are also giving importance to the Progressive MS drugs by providing additional support like priority reviews to speed up the approval process. We will have to wait and see in the coming 5 years as to how the landscape of MS changes for the patients as well as physicians.