An MRI machine sits in the bottom right hand corner of the frame. There are 3 question marks flying out of the machine with one that has a "no" symbol on it.

MRI: How They are Useful, Problems They Can Cause, and Why I Don't Have Them Anymore

If you have been diagnosed with MS or have been tested for it, you’ve had at least a couple of magnetic resonance imaging scans, or MRIs, that can reveal lesions in your central nervous system. Unlike x-rays and CT scans that use radiation to produce images, MRI machines use powerful magnets and radio waves. It provides the clearest, most detailed images of matter in the brain and spinal cord, and this is why doctors prefer MRIs over other kinds of scans. While it’s an important advancement in MS testing, it has a few drawbacks.

Drawbacks of MRIs

MRI machines take much longer than x-rays and CTs that only require ten minutes or less to complete. They are also very noisy. Multiple sclerosis patients spend anywhere from 20 to 90 minutes inside the tube. It depends on what is being scanned and whether the patient will be injected with dye during part of the exam. That’s a long time to have to endure the clanking, buzzing and ringing that’s so loud we have to wear earplugs.

Discomfort using MRI machines

For many MS patients, these distractions are nothing more than minor annoyances. But for some people, MRI machines present more serious issues. For example:

  • Some patients can’t have MRIs because of metal implants.
  • Others are claustrophobic and cannot occupy a confined space without using a sedative beforehand.
  • A number of patients suffer from pain, spasticity, and cramping, making it impossible to relax enough to remain still for any length of time.
  • Some patients suffer from anxiety, claustrophobia, pain, cramping and spasms all at once, making it very unlikely they could endure the procedure, even with the help of a sedative.
  • Lots of insured patients cannot afford the copays.

It is easy to understand why these issues might drive a patient to stop having MRIs all together. I stopped having them years ago. Here’s why.

Why I stopped having MRIs

My very first brain and spine MRIs showed no brain lesions and two in the cervical spine, at C2 and C5-6. My second relapse 5 years later showed the spinal lesions remained the same but I developed a brain lesion in the periventricular white matter. So now I fulfilled the diagnostic criteria by developing a new lesion disseminated in space (brain rather than spine) and time (more than a month after the first attack). That and a positive lumbar puncture brought a diagnosis. So far so good. However…

My MRIs remained unchanged despite experiencing relapses

I relapsed 4 years later, an attack that caused significantly more disability. I started using a cane and taking symptom meds for leg and bladder spasticity. I had to retire and file a SSDI claim. But my MRIs remained unchanged.

Two years later, I had a rebound relapse from stopping my DMT (disease-modifying treatment). My symptoms returned to baseline. The MRIs showed no changes.

Leg weakness, foot drop, and other MS symptoms

Four years after that, leg weakness and foot drop appeared on my right side. Before then it was only on my left side. Balance and dizziness got worse. Bladder symptoms worsened, too, temporarily. Leg worsening is permanent. But MRIs showed no changes.

I don't see a reason to keep having MRIs

I haven’t had an MRI for 5 years and I won’t have one unless something happens that might indicate another cause and need to be sorted by having a scan. In my case, 20 years’ worth of scans have shown no lesions that correspond with worsening symptoms. So I see no reason to keep having them.

MRIs are expensive

As far as copays go, my MRIs cost $3,200 with a patient copay of $330. I’ve always applied to the hospital patient assistance program and qualified for charity and complete debt forgiveness.

Talk to your doctor about any MRI questions or concerns

If you have any concerns about continuing MRIs, please talk to your doctor about it honestly. Discuss all your thoughts and ask questions. If you struggle to cover the copay and you haven’t found charity assistance, this is a valid concern to tell your doctor. They might decide to schedule the scans less often, or let you decide when you’re ready. Same goes for anxiety issues.

Remember that you don’t have to have MRIs if you don’t want to. Just like with every other aspect of your care, you call the shots.

Do you have trouble with MRIs? Do tell!

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