New lesions not showing up with contrast

Symptoms and treatments
1

Hi everyone, grateful for any expertise or advice please.

My basic question is: what does it mean if a lesion is definitely new within the last month (I had a repeat mri) yet isn’t showing up with contrast (which I read shows active inflammation in past three months)?

Does that mean it’s a degenerative PPMS lesion?

Is there any other explanation? Does contrast not always show up? Can a recent course of steroids affect how the gadolinium works?

Thank you

Longer version / context:

I’ve been having investigations for MS after onset of foot drop in late March, having already had subtle bladder and eyesight issues for several months before that.

First scan in early May was without contrast as folks doing it didn’t notice the relatively small number of lesions - mostly in my spinal cord - only picked up by radiologist after.

I then had lumbar puncture and intravenous steroids, which didn’t work, then massive course of steroid pills which also didn’t help my symptoms.

LP confirmed oligoclonal bands in CSF and also in serum. Referred to a second consultant more specialist in MS/neuroinflammatory conditions.

Symptoms getting worse and onset of Lhermitte’s sign but repeat MRI after one month showed no change and no active inflammation showing up with contrast.

Visual evoked potentials confirmed damaged to right optic nerve.

Consultant in two minds whether unusual presentation of opticospinal MS (due to only one lesion in brain) or NMOSD (despite negative antibody tests so would be double seronegative, super rare).

Meanwhile my main symptoms been getting worse. Consultant says no point trying any other treatments like Plex unless any active inflammation. So had a repeat MRI last week. Shows new lesions in brain (which I guess makes NMOSD less likely) but none showing up with contrast.

My consultant originally suggested me having been on a big dose of steroids could have explained lack of contrast showing up in the previous scan, but the whole purpose of this latest scan was to check for active inflammation so I assume he thought contrast would work now I’ve finished steroids, even if the effects linger. He’s away til the end of the month tho.

Both consultants I’ve seen so far have assured me it’s not PPMS as onset of PPMS usually much slower. I’m just scared that the fact I’m getting worse despite steroids and despite apparent lack of inflammation (and I’ve got the bands in serum as well as CSF) all points to PPMS, and maybe just an unusually rapid deterioration. Which is a very scary thought and I really want to be wrong.

Thanks again x

2

Hi Emily, oh dear what an experience you’ve had since March. I gather from your post that symptoms began less than a year ago. You’ve had several MRI’s, other Neurology tests plus 2 Consultants in the past 6 months.

Your results, so far, are inconclusive so an actual confirmed diagnosis does take time, sometimes years.

It’s likely the Consultant will see you once or twice each year to monitor what is going on and continue until significant evidence is clear. A very slow, but thorough process.

It’s early days for you to have a confirmed diagnosis. You’ve done well to have had the amount of tests, MRI’s and the results within the past 6 months, having had symptoms for less than a year.

I should think your current Consultant is the person to ask when they return from holiday in two weeks. You could phone the Medical Secretary to pass your query for urgent attention and they may respond quite quickly.

The symptoms you describe do align with MS. Many of us with MS start to research all terminology, possibilities & probabilities related to MS in the belief that knowledge is power. Yet the old adage of “a little knowledge is a dangerous thing” applies.

It’s still a horrid & worrying time of not knowing because there’s no quick fix or quick diagnosis.

The answers to your questions may be interesting but they can’t affect whatever the condition is. They won’t alter your worry or fears. MS, in whatever type, is cruel but it is not the end of the World.

PPMS
For myself, I began various symptoms that came & went for 15 years. I took strong painkillers but still travelled around the UK with my career.

In 2005 I had my first Scan plus an MRI, it showed some brain damage but no one mentioned M.S. By 2010 I was struggling to work, more symptoms were regular for longer, more MRI’s, EVT, L.P & an armful of blood tests.
18 months later, November 2011 I was diagnosed with M.S. no specific type…a wait a see time.
In 2013 my eminent Consultant confirmed PPMS. My driving licence was revoked immediately due to MRI evidence, poor cognition & many other symptoms.
Eventually I took ill health early retirement, successfully claimed high rate PIP, learned bus routes & times, joined local Club, caught taxis. Life didn’t end, poor cognition means my husband, daughter, family & friends help me a lot.
I’ve accepted my disability & bought an electric power chair., electric adjustable bed, I refuse to be pitied and I laugh as often as I can.

So all in all Emily, I can’t answer your actual question but I can give you encouragement and advice on coping etc.

Other people on this Forum are so supportive and helpful.

Please try not to get bogged down with medical technologies and the What If’s in M.S. It really isn’t as useful as we’d hope and usually ends up in anger & frustration.

I wish you well.

Chrissie