Today I was asked a question that I myself was asking not too long ago. How do you know if you have secondary progressive MS? I asked my last neurologist this furring my last visit and he was unable to answer my question… If I had to guess, I would say he didn’t even really know how to define Secondary Progressive MS let alone diagnose it… So allow me to briefly explain:
Secondary-progressive MS (SPMS)
About 50% of people with Relapsing remitting MS Develop SPMS
Secondary-progressive MS typically develops from RRMS over a gradual period of time, 10 years on average, but the numbers can vary anywhere from 2 years to 40 years. People with SPMS experience less relapses but gradually obtain more permanent symptoms.
So basically, when you have SPMS you slowly get worse over time. Some people may experience relapses and other may simply just get worse gradually. But how do you diagnose Secondary Progressive Multiple Sclerosis? I did some research and my reading revealed my suspicions to be true. There is no concrete way of diagnosing SPMS… It’s pretty much up to your neurologist to make the call… There are probably lots of people out there who have SPMS but haven’t been diagnosed as an SPMS patient because there are so many factors that can cause you to think you have SPMS when in actuality you may not… Also because some neurologist might not really know how to diagnose you with SPMS…
According to an article by the MS Society, most neurologists want to see about 6 months to a year of steady deterioration before using the phrase “secondary progressive” but this is a tricky amount of time considering it can take some people between 3 and 6 months, sometimes longer, to fully recover from a relapse… It can be especially hard to know for sure if you are steadily getting worse if you are continuing to have relapses causing your overall health to look like it’s simply getting better and worse, better and worse, when in reality it may be getting better and worse, better and then a little more worse each time around…
Neurologists will also want to make sure that your worsening of symptoms is actually a neurological issue and not related to other factors such as depression, lack of exercise, or menopausal symptoms which can all lead to an increase in MS symptoms.
So what’s the verdict? Well if you ask me… It’s just a label that your doctor can choose to give you or not… Whether you have the label or not your health will remain the same because there really isn’t any different courses of treatment you can take… So either way it goes, the goal should still be to remain as active and healthy as possible. MS is too unpredictable for you to worry about what kind of MS you have because really there is only one kind of MS and that’s the kind of MS that sucks.