Question about DMD's / meds in general

Hi all, I was diagnosed on 26 th September. Should I not have been offered some meds? Thanks


I would have thought they will have discussed your options with you regarding medication unless you have another appoinment very soon with your doctor? if not best to get in touch and discuss with them.


No, the neuro didn’t discuss anything with me and seemed of the opinion that most of my symptoms are psychosymatic and inconsistent, despite presenting with the same symptoms from the very beginning. I don’t have another appointment with her. I had three days of IV steroids and then it was kinda, go away and get on with your life.

You will only be offered DMDs (disease modifying drugs) if you have had at least two “clinically significant” relapses in two years. The “clinically significant” bit is open to interpretation, but basically means disabling / debilitating / serious.

The full criteria are in the NICE CG8 full guidelines for MS. Unfortunately, some PCTs add their own extra rules (things like “sensory relapses don’t count” and “only if you’re under 60”) so it is a bit of a postcode lottery too.

Sounds like you need to find yourself another neuro. You may not qualify for DMDs, but you should definitely still be on someone’s clinic list; hopefully someone who actually believes their patients!

Karen x

Thanks, Karen. I guess I’m impatient to get better. It’s been 14 weeks now and whilst I would say that the physio and o/t have made a big difference to my gait, the vertigo and numbness just persist as do the niggly smaller issues.