MS Nurse without Diagnosis

Hello All,

Has anyone else ever been referred to an MS Nurse without having been given a diagnosis of MS, or indeed CIS?

It’s been confirmed I have two lesions on my brain via MRI, but I’ve had no actual diagnosis of anything specific.

I’ve recently undergone a second MRI for my spine, which I’m fairly confident will show something amiss, but will have to wait between 2 and 6 weeks

My Neurologist booked me in for the MS Nurse before the most recent spinal MRI, but I’m kinda bewildered as to exactly what is happening. I believe the Neurologist is waiting for that MRI results before diagnosing anything, but referring me to the MS Nurse is kinda confusing.

If anyone has gone through anything similar, in any way, or has thoughts on this I’d be delighted to hear.

I should also add that I’ve been prescribed Duloxetine for headaches for the past 6 months, and my dose will be increasing once again soon. But again, this is all without any actual diagnosis unfortunately.

Hope this makes a bit of sense, and would appreciate any input :slightly_smiling_face:

1 Like

Medics (and patients!) can have a pretty good idea what the matter is before all the boxes have been ticked. I would just go with the flow.

If your MS team are anything like mine, then it’s sheer ineffectiveness that has led to the order that things have happened.

I got a diagnosis in Feb’21, an appointment with MS Consultant in April who then took 2 months to write a report to my GP and copy in to the MS Nursing team. I had actually been contacted by the MS Nurses in April also, but with no letter from the Consultant, there was no foillow up.

Be careful with duloxetine. It’s an anti-depressant also used for pain relief. I got prescribed some by a neurologist, pre-diagnosis and it turned me into a zombie. Read the notes carefully and decide if it is really helping you.

Hi, yes I was. Took 22 years to get diagnosis.

I was typical PPMS in presentation, which progressed rapidly.

Spinal lesions were hiding!


Perhaps the Neurologist is confident enough that it is MS to refer you to the nurse, but not able to officially diagnose you until you have passed all the criteria? Difficult one. I wish mine had referred me to a nurse. Still waiting for an MRI with contrast. I’ve had one MRI on head, neck and spine and it showed multiple lesions in my brain and one active in my spine. The first neurologist said he was confident it was MS, but that the next stage is to be referred to the Inflammatory Clinic. That was January. Still waiting with no official diagnosis, just a letter that says ‘probable MS’.


1 Like