Primary progressive multiple sclerosis just means that the onset is a slow progression without a prior history of relapsing multiple sclerosis before the onset of progression. People with PPMS can still have relapses and make active lesions sometimes. "progression" is simply a clinical term. Secondary progressive multiple sclerosis is a slow progression of symptoms with a history of relapsing multiple sclerosis prior to the onset of progression. Hence, the progression is "secondary" to a history of relapsing multiple sclerosis. Both primary and secondary progressive multiple sclerosis can have relapses and new MRI lesions. This varies from person to person. However, as people get older and have a longer history of progression, they are less likely to have relapses, gad+ lesions on MRI, and new or enlarging T2 lesions on MRI.CureOrBust wrote:You appear to have confused PPMS (Primary Progressive) with SPMS (Secondary progressive). In PPMS you have no relapses, but SPMS you still have relapses. see NHE's post above.
It is relatively rare for people with multiple sclerosis in their 70s and 80s to have distinct clinical relapses. Although, people can have fluctuations in symptoms which are perceived as being "relapses" (pseudorelapses). Of course, there are always exceptions to what is typical.
The overwhelming evidence suggests that PPMS and SPMS are the same disease. The lesions are similar in appearance, and on 7T MRI, the lesions often have a central venule in both conditions. Both people with SPMS and PPMS have an 85-90% probability of having >1 oligoclonal band unique to cerebrospinal fluid on spinal tap. The average rate of progression varies widely from person to person, but it is similar on average in both SPMS and PPMS. SPMS and PPMS also have a similar average age of onset of progression (though people with SPMS may have had relapsing disease for many years prior to the onset of progression).
Many experts feel that people with PPMS simply never experienced a clinical relapse but may have had the underlying subclinical pathological condition of multiple sclerosis for many years prior to the onset of clinical progression. Some individuals with RIS (radiologically isolated syndrome) will be stable for many years and then develop PPMS.
My point above is that the distinction between SPMS and PPMS is somewhat arbitrary and should not necessarily influence treatment. If you have progressive multiple sclerosis but have significant relapses and develop many new active lesions on MRI, there may be a role for these medications (if you are willing to risk the side effects). If you are somewhat older, your decline is very slow and insidious, and your MRI scans always look stable despite clear clinical worsening, the benefit of any disease modifying therapy is dubious.
Are you hot or are you not?
I at least appreciate the honesty of Dr. Freedman in stating this. However, I do feel for 1eye because it sounds as though Dr. Freedman may not have the best tact and bedside manner, and I know we have all experienced this. My experience with my husband's neurologists is that they are usually socially awkward.