"Delayed MRI, Delayed MS Diagnosis"

I am sharing my experience because I am deeply concerned about the delays in my care and the impact this may have on my health.

Last year, during my initial assessment, I was informed that a spinal MRI had been recommended by a doctor who sadly no longer works at the hospital. However, this scan was not carried out in a timely manner, and no clear explanation was given for the delay. As a result, I continued to be labelled as having CIS rather than being given a confirmed diagnosis.

It was only in February this year after my delayed spinal MRI that I was formally diagnosed with multiple sclerosis. This raises serious concerns for me about whether my diagnosis, and therefore treatment, could and should have happened earlier.

Following this, I have now been advised that I must complete a course of varicella (chickenpox) vaccinations before starting medication for MS. While I understand the reasoning behind this, it means a further delay of approximately three months before I can begin treatment.

Taken together, these delays mean I am facing a prolonged period without any disease-modifying therapy.

What I find most concerning is that I have effectively been told that if my condition worsens during this time, it will be managed with steroids. From my understanding, steroids treat the symptoms of a relapse but do not prevent new lesions or ongoing disease activity. This does not feel like a preventative or protective approach.

I am worried not only about relapses, but also about silent progression that may be happening without obvious symptoms.

At this stage, I feel that my care has been reactive rather than proactive, despite the known importance of early treatment in multiple sclerosis.

Instead of emotional counselling and apologies over the phone, I would like clear answers to the following, why was the spinal MRI recommended last year delayed? Could my MS have been diagnosed earlier if this had been done on time? What assessment has been made of the risk to me of remaining untreated for this extended period? Why has no interim or bridging treatment been considered while I wait to start MS medication?

I am sharing this in the hope that my case will be reviewed, that I will receive clearer communication, and that steps will be taken to ensure patients are not left in similar situations in the future.