Hope that you are all well. I just want some advice really. I’ve been on Rebif since Feb following a CIS diagnosis. They have been keeping a close eye on my white blood cells as these have been up and down but always on the low side. Anyway, my neurologist has just called me to say that my levels have dropped again, to take a treatment holiday, repeat bloods in 2 months and then see her to discuss treatment options. I had an MRI in November which was unchanged.
I can’t help but worry about relapsing whilst not on treatment and had thought that I wasn’t eligible for many options. However, she mentioned tablets so wondering if anyone else has switched from Rebif and had oral meds with a CIS diagnosis. My symptoms are sensory and mainly at night but haven’t resolved since starting last June. I did have an episode of pins and needles in my lower legs/feet in 1999. This hasn’t been included for diagnostic purposes as difficult to rule in or out as only had MRI lumbar spine.
I have to admit to feeling a bit all over the place since she called.
Thank you for reading.
Edited to add that I picked up her letter today and she mentioned that we will discuss the update Mcdonald criteria 2017 when I see her in clinic. Looking that up, it allows for ms diagnosis from positive LP plus lesions disseminated in space but doesn’t need time too.
“Probably the one that’s going to be the most controversial,” he said, is the recommendation to use the presence of OCBs in cerebrospinal fluid (CSF) to make the diagnosis of MS in a patient with typical clinically isolated syndrome (CIS) who has clinical or MRI evidence of dissemination in space
Guessing that’s why I’ll be eligible for different treatment options as I’ll be diagnosed with ms.
Also, my planned laparoscopy booked for 7th December has now been cancelled due to my low wbc 😢
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