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Anyone dx and not been offered nedication?

Hi, my neuro has given me a probable dx of ms (just waiting on MRI) however she has said that she doesn’t want to give me medication until symptoms become more severe. Surely the sooner you start the better? Anyone else not on medication? Liza

Hi Liza,

It depends which medication you mean. I don’t think disease modifying drugs (DMDs) would ever be given without a confirmed diagnosis - which obviously “probable” is not. They are non-trivial in terms of both mode of administration (self-injection) and risk/side-effect profile, so the risk of prescribing them to someone who still might not have MS would not generally be considered in the patient’s best interests.

Even on a confirmed diagnosis, prescribing rules say that patients should normally have had at least two clinically significant relapses (i.e. attacks, or episodes) in a two year period, before being offered DMDs. “Clinically significant” is not defined, but some consultants treat it as meaning “disabling” - i.e. not merely sensory.

If attacks have been less frequent, less severe, or both, patients usually won’t be recommended for DMDs.

If you are talking about relief of symptoms, however, you should absolutely not need a confirmed diagnosis to be offered something for that. Symptom relief does nothing at all to alter the course of the disease, but obviously does have a significant impact on quality of life. There is no reason for a “wait and see” approach to treating symptoms.

Hope this helps,

Tina

x

Hi Liza,

I was diagnosed with RRMS last year and I’m not on any DMD’s. I don’t qualify, even though my neuro agreed I’d probably had MS for the past 20 years. I had only ever had really mild relapses, until last year, when I had a major one which affected the all the left side of my body and I was off work for 6 months. I had an MRI and had one large lesion on my c-spine. I am taking pregabalin and amitriptylene though.

Fizzy x