Forum

treatment for newly diagnosed

My friend is newly diagnosed with MS after lumbar puncture and MRI - however, she has been told there will be no treatment offered before her next appointment with consultant on April 2020. As she is not the only member of her family with MS, she is obviously worried that medication hasn’t been offered to her to slow or improve her symptoms. Has anyone else experience of this. It would be very helpful to hear of like expereinces.

Hello Suzy

That sounds a bit odd.

Has your friend been diagnosed with relapsing remitting MS? This would be where she has experienced a pattern of relapse, where symptoms start, last for a period of weeks or months, then partially or completely remit (ie get better). If so, she should have been offered a disease modifying drug (DMD). If however, the neurologist has very strong suspicions that her MS is progressive, which would mean there isn’t a pattern of relapse and remission, just a steady pattern of symptoms with no improvements, it’s possible that they want to hold off DMDs until another relapse proves them wrong.

Normally though, the first action of a neurologist is to prescribe a DMD even if there is some doubt over whether the persons MS is relapsing remitting, since it’s better to err on the side of relapse prevention.

In your friends shoes, I’d be tempted to write to the neurologist and ask for a DMD, or for a reason why one hasn’t been suggested. Or at the very least, to speak with her MS nurse (assuming she has one) to ask for advise.

She should be aware though, that a DMD isn’t likely to improve residual symptoms. Their aim is to prevent relapses and the severity of relapses.

Sue

I wonder if there is a subtle?? move by the medics to NOT prescribe DMD’s as readily as they used to.

Hi

As Sue says, I’d get your friend to call her MS nurse/neuro and ask for advice about starting a DMD. If she’s experiencing specific symptoms, like pain or spasms, then she should give her GP a call to talk about medication that could help with that.

Dan