I am the type of person who needs information. Apparently I am a type A personality and don’t do well without control. I have copies of all of my medical records for the last 11 years, including blood work, radiology reports and everything in between. I read all the information I can get my hands on because I am trying to know everything I can about MS since I cannot control what it is doing to my body.
The first Neurologist I had, and fired because she told me to “shut up” when I asked if it was possible I could be secondary progressive didn’t feel providing patients with information was important. She basically just gave me meds, told me to take them and drew blood. Even when I had new lesions while taking the “best drug on the market” she refused to take me off of it.
My current team is amazing, I have no bad things to say about them but they always dodge me when I ask about the possibility of being progressive. I never understood why no one wants to discuss this. That is, until I went to an MS Education Summit at the beginning of November. Towards the end you are able to submit questions, so I did, five actually, and they answered four. The main question was about how doctors can tell when a patient is SPMS instead of RRMS. The actual answer made me better understand the logic which is all I really look for in understanding this disease that impacts each person in a different way.
The Neurologist, who also teaches at the local university answered, they can only tell when a patient changes status by talking with the patient and listening to how the disease is changing. That was followed by, patients shouldn’t be too concerned about getting that diagnosis though because right now, in the United States, there is no approved treatment for SPMS. This means that once you get that status insurance is less likely to approve any treatments for slowing down the progression any further.
It is times like those when I realize how terrible our medical system currently is. Treating MS is expensive, why wouldn’t you want to treat all types so progression slows and people can work longer and be part of society.
Final thoughts? I am no longer feel like I need to ask about my “type” of MS. Also, I learned at the summit that after a patient dies they cannot tell the difference between SPMS and PPMS when looking at the brain. I found that very interesting.