Reaching a Multiple Sclerosis Diagnosis
I was diagnosed with multiple sclerosis (MS) in 2008, so when I think back it all seems like a blur.
I initially went to my doctor with what I used to call my “funny leg problem," a slight dragging of my right foot after running on the treadmill at the gym. Also, I noticed it when walking for longer than 20 minutes, but MS wasn’t even on my radar in those days. Why would it be? I was healthy, happy, and only 32 years old.
My doctor referred me to a neurologist for further tests, but I still couldn’t make the connection between my symptoms and a neurologist. I thought they exclusively dealt with brains – so what did having to go to a neurologist has to do with my funny leg problem?
I happily went through all the prodding and investigation, not realizing what my neurologist must have suspected. At one appointment, I remember asking my neurologist, “What do you think it might be?" He successfully dodged my question and avoided answering it until a few months later when he was sure it was multiple sclerosis.
How Is MS Diagnosed?
Many people with MS tell me that they waited for months or even years for a definitive multiple sclerosis diagnosis. This is because no two people are the same when it comes to symptoms, physical findings, or lab tests results.
Neurologists and other healthcare professionals must look at all the findings together to rule out other conditions before they make the final diagnosis.
This diagnosis process can be quite quick for some people, but for others, it may require some repeat testing to make sure that they conclusively have MS. It can be a scary and frustrating time waiting for a diagnosis, and it can feel like you’re jumping through hoops and performing like a circus animal, but sometimes you need to be patient in order to find the answer you're searching for.
Multiple Sclerosis Diagnosis Criteria
Currently, there are no set symptoms or single tests that can determine if you have MS. However, healthcare experts use a variety of tools and strategies to see if you meet the MS diagnostic criteria. In order to make a multiple sclerosis diagnosis, your neurologist or healthcare team must:
- Find evidence of damage in at least two areas of the central nervous system. This will include damage to the brain, spinal cord and/or optic nerves.
- Discover evidence that the damage was caused at different times.
- Rule out all other possible diagnoses – for example, systematic lupus erythematosus, sarcoidosis, and Sjogren's syndrome.
- Your neurologist will ask about your history to identify symptoms that may be caused by MS. They’ll also ask about your family history and environmental factors that might provide further clues.
Tests Used to Help Reach a Multiple Sclerosis Diagnosis
Neurologists will carry out the following tests to investigate damage which may be causing symptoms. For example, a variety of tests will be carried about to assess cognitive, emotional and language functions as well as strength, coordination, balance, gait, reflexes, and vision.
Magnetic Resonance Imaging (MRI)
The MRI machine is a large, tube-shaped scanner which takes detailed pictures of your brain and spinal cord to detect damage and abnormalities. You lie down and slide into the machine, and the hardest thing is keeping as still as possible, so the images don’t come out blurry. You wear headphones so they can talk to you while you’re inside and so you can listen to music or radio.
My first MRI scan took about 40 minutes, and I was amazed at how loud it was! The whirring, clanging, and thumping seems to shake your bones from inside, and I remember a rising panic as I imagined the world outside ending and being stuck forever! I’m used to MRI scans now and have even fallen asleep amid the din a few times, but that first experience was terrifying.
The results are clear for the MRI technicians to see too, and I remember the concern on her face when I came out and her gently asking if I had an appointment with my neurologist soon. I dismissed it at the time but looking back, I think the results were clear.
MRIs are often repeated yearly to investigate changes to your condition such as new lesions and damage caused by MS.
Cerebrospinal Fluid Analysis
This is, by far, the most unpleasant and invasive procedure I’ve ever had. It’s also called a lumbar puncture and involves taking fluid from your spine using a needle.
I remember laying on my side while nurses dug around, trying to locate the right spot. It was agony and I felt poorly afterward with nausea and a headache.
Luckily, this procedure only gets done once to help neurologists determine which type of MS you have so you only have to suffer it at the beginning.
Maybe I had an inexperienced nurse, and it’s not as bad for other people. Hopefully, my experience isn’t typical for everyone.
Visual Evoked Potentials
These tests involve looking at a computer screen with electrodes attached to your head. It’s designed to test the speed of nerve messages between the brain and eye, and you need to be on your own in a quiet room while the tests are carried out. I didn’t mind these tests and remembered them to be quite fun! Again, these tests are only carried out at the beginning during the diagnostic process.
As we as the tests above, a neurologist will also look at your medical history and carry out a neurological exam.
What's Next After Testing?
So, once all the results are in from all the tests described above, a multiple sclerosis diagnosis can finally be made.
I remember feeling floored by my diagnosis and having to drive home on my own afterward. My neurologist showed me pictures of the inside of my brain to demonstrate his diagnosis and I burst into tears in his office.
Once a multiple sclerosis diagnosis has been made, you can deal with it. Many people have described the relief when they finally know what they’re up against.