Letter from consultant
Received a letter from my MS Dr. Am I reading it right that I mu MS is changing from RRMS to SPMS
(Hopefully copied below)
Just to let you know that I now have in front of me the report on your scan. It shows
a few more compared lesions to the scans that you had in 2011 which shows very
small activity. I therefore think that it is more likely that you have entered the phase
of progression as we do not see any clear relapses any more but of course we car
talk about this when you come next for follow-up
Hi - yes it sounds like he is suggesting that. However SPMS is primarily a clinical diagnosis - ie. Are you having worsening in your symptoms despite no relapses. Has your EDSS score increased despite no relapses. Drop foot or worsening in sphincteric function (bladder/bowel) often feature. Are you about 10/15 years from your original onset or symptoms or diagnosis. Two options: 1. You are still RRMS, but tecfidera is failing you and you need a more effective medication. Your dr will be asking you about waxing and waning of symptoms indicative of relapses. 2. You are SPMS and you should be managed primarily symptomatically. Depending on your area, you might qualify for siponimod, you might not. I’m not sure there’s a lot of benefit to you in this diagnosis. To be honest with you, in my opinion it’s all bullshit and labels. It’s all one disease on a long spectrum. Even before DMDs, half of PWS never moved on to secondary progressive. Treatment should never stop. If your legs are failing you, you still have your arms and brain, and vice versa. But the NHS in UK and health insurance companies in the US cling to the distinctions to justify cost effectiveness and stopping medication. Also one of the reasons people should be wary of possibly OVER exaggerating their symptoms for PIP to their clinical. It becomes part of the clinical record.
@mellowmedusa well said! Couldn’t have said it better