Diagnosing MS Isn

Diagnosing MS Isn’t Easy — Here’s Why

This article is for undiagnosed people that go to online MS forums, list their symptoms, and ask if they have MS. It’s also for those who track their symptoms, google them, and convince themselves they have MS. Folks, it’s just not that simple. Here’s why.

How neurologists test for MS

Neurologists make the diagnosis partly based on a physical exam that checks all your cranial nerves, reflexes, coordination, balance, and vision. Some of the tests involve a tuning fork to check sensation; standing with our eyes closed to see if we sway, fall down, maintain our upright stance, or surprise them with something completely different. Our knees and elbows get hammered for reflex briskness or an absence of rebound. And there are many more weird little procedures that can expose a unilateral abnormality (just on one side), as well as limited vision, hearing, and touch. As thorough as it is, it’s just a snapshot in time.

MS symptoms are similar to other conditions

But MS poses some small problems. First, it tends to show itself in bits and pieces over time. Second, the symptoms—of which there are many—can indicate a bushel of other medical conditions. For example, one foot might have developed numbness. Maybe it started in one toe and then spread to the entire foot. It could be an early sign of MS. But it can also signal diabetes, or anything associated with damage to peripheral nerves (those located in the extremities and anything outside the central nervous system). That kind of cause is more common than conditions like MS that affect only the central nervous system (brain and spinal cord).

The need for blood work

This is why MS diagnostic tests start with blood work. The most common causes for neurological symptoms put markers in the blood, helping to rule out MS. Lyme, diabetes, thyroid disease, and vitamin deficiencies are major offenders that leave behind a smoking gun in the blood. (As of 2018, there is no blood test available for MS, although one has been developed and might soon become part of diagnostic testing.)

If blood work tests negative, the diagnostician turns to brain and spine MRIs. Lesions consistent with MS will appear in certain areas of the brain and cervical spine, and with a certain appearance and shape that only the trained eye can determine is being caused by MS and not a migraine, aging, or cancer. Radiologists and neurologists are not all equally gifted in this area, however. Doubt can linger, delaying a diagnosis and treatment. A misdiagnosis can delay proper treatment.

Other diagnostic tests

Evoked potentials testing involves sticking electrodes to your scalp. For vision, you stare at a checkerboard while a machine measures how long it takes electrical signals to travel from your eyes to your brain. For hearing, tones are sounded while the machine measures the speed at which signals travel from ear to brain. It’s just one more piece to add to the puzzle.

A lumbar puncture, or spinal tap, checks the cerebrospinal fluid for signs of inflammation within the closed system of the brain/spinal cord. If such inflammation exists, bands will appear that will be absent in the blood.

Still not easy

Now you’ve completed all diagnostic testing for MS. After all that grief, the diagnosis should float to the surface as easily as in a Magic 8-Ball, right? Not necessarily.

If you have MS and it’s early in the disease course, you might not have tested positive in all the MS tests. In fact, you might not have tested positive in any of the tests. Let’s say the blood tested negative for all differential diagnoses. But you also had negative lumbar puncture; one iffy spot in the brain MRI and none in the spine; iffy evoked potentials; and mostly normal physical exam with some iffy things such as numbness and one brisk reflex. Result? No diagnosis at this time. Not for MS and not for anything else.

Watching and waiting

Now, you wait. You keep track of your symptoms. Whenever there is a change, you see your doctor.

This is the course many people with MS follow on their way to a diagnosis. Some people never get diagnosed. Others eventually get misdiagnosed or properly diagnosed with another disease. In any case, diagnosing MS is not a piece of cake and likely won’t be for some time to come.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. Numbness Causes. Mayo Clinic. Published January 11, 2018. Accessed online April 13, 2018.

Comments

View Comments (4)
  • itasara
    9 months ago

    My path for diagnosis was probably easier than many Have had to endure. No one in my family ever had MS that I know of or my husband’s family for that matter. Then one day my daughter told us she had come down with transverse myelitis while at college. She came home for a spinal MRI which may have shown a lesion but it wasn’t definite And the doctor told her that it would probably subside soon and she should go back to school which she did and it most often people get it and it goes away. Then afterwords she had optic neuritis she went to see an ophthalmologist at college called us and said after these two incidences we might want to consider MS. She just about Age 20. She came home had a brain scan and the lesions were confirmed. We were floored to hear this news! Totally unexpected. She had little things bothering her now and then when she was growing up but nothing that we would ever attribute to MS at least our understanding of MS at the time.

    Three years later I woke up one day and I had symptoms transverse myelitis and I knew what it was right away. So a couplwvweeks later I saw my GP who ordered a spinal MRI which showed two lesions. And because of my daughter’s diagnosis three years before he sent me for a brain MRI which showed a bunch of non-active lesions. And so I was diagnosed right on the spot.I was 57 at the time. No need for spinal taps or blood tests. the diagnosis was based on Familial history of one relative, And two MRIs.. Did I ever have any symptoms that I could recognize I guess I had one maybe several months or so before hand and I didn’t know what it wasI found out after diagnosis, not from my neurologist but on online while I was Researching MS. That is when I figured out I had been having MS hugs. My GP thought when I mentioned it well before I ever knew I had MS that they were just innoculus muscle contractions.

    So that was my story Of diagnosis that happened with my daughter 15 years ago and myself over 12 years ago.

  • Tazz
    9 months ago

    I had vague and gradually worsening symptoms for some years, and didn’t really talk to my GP about them until they were starting to significantly interfere with daily life – I had previously just attributed them to getting older, heading into menopause, and not being particularly fit. Then, when things started getting quite difficult I couldn’t get access to a neuro because none of my symptoms was particularly severe – no optic neuritis or sudden numbness or loss of movement – in our health system this equals go to the bottom of the waiting list as a very low priority and sit there forever.

    One GP I saw made me hop up and down on one leg (which I failed miserably at), went “Hmm, looks a bit like Myasthenia Gravis…” but didn’t refer me on to a specialist. An ENT specialist thought my balance issues were BPPV – which bears no resemblance to the balance problems I was actually experiencing (I’ve since developed intermittent BPPV and I sure know the difference). Eventually (at vast expense and a 400km trip) I got to see a neuro, who said “It won’t be MS – it doesn’t fit the pattern”, told me I needed MRI, additional blood tests, evoked potentials, etc, but didn’t give me any referrals to get any of these the tests done.

    Months later I finally get to see another neuro, who also says “It won’t be MS – it doesn’t fit the pattern”, but did order an MRI. Even more months later I get to see him again, and he’s still saying “It won’t be MS – it doesn’t fit the pattern” – but that was only until he saw the MRI for himself – I had too many brains lesions for the radiologist to have bothered counting them, and three big ones in my cervical spine.

    So – my MS was diagnosed on the basis of one MRI and clinical history, and no other tests were done. I certainly wasn’t upset at missing out on a lumbar puncture, but it did concern me that no blood tests were done – especially to rule out B12 as a possible cause. As a result I ended up organising this through my GP – thanks heavens I have a good one – and I didn’t have a B12 deficiency – but this SHOULD have been checked by the neuros.

    I know it is important that people are not mis-diagnosed and the repercussions of a mis-diagnosis can be significant. However, what annoys me so much about my own diagnostic “journey” is that both neuros were only thinking of MS in its relapsing form and didn’t even consider Primary Progressive MS as a possibility. With what I’ve learnt since being diagnosed I’ve found that in as much as there is a “pattern” for progressive MS, I tick every box on the list (thank you, Barts Blog, for being such a wonderful source of reliable information). And Neuro No 3 who I now see is an MS expert and he has confirmed what I thought – that my MS has been PPMS all along. And with the benefit of hindsight I now realise that my symptoms were first apparent nearly eight years before I finally got a diagnosis.

    So what is the moral of this boring little tale – while we must NOTrely on Dr Google for a diagnosis, we still need to be our own advocates and keep respectfully pushing for some answers and not just be shuffled into the “too hard” basket.

  • potter
    9 months ago

    I begged my GP for at least 10 years to give me a reference to a neurologist for MS testing. He thought I was a hypochondriac and would denied me every time. The company my husband worked for had a unusual health insurance and it was nearly impossible to get a GP. This GP was our doctor because he had bought our retired doctors practice and had to take us. I had symptoms for at least 10 years and even had MS hug problems for 3 months. I have a extensive history of family members with MS and ALS and he knew that. He finally gave me a neuro reference when he thought I had damage the nerves in my elbow throwing on my potters wheel. I said to him when I got the referral, maybe they will test me for MS. He said to me “They can’t do any thing for you anyways”. When the neuro looked at my history he said I will test for nerve damage but I am also testing you for MS. I didn’t have any nerve damage, I had so many lesions in my brain that it showed I had MS for quite a while. I finally got to switch to a woman doctor in the same clinic, she agreed to take me as a patient. She didn’t think my GP was taking very good care of me. Potter

  • Kim Dolce moderator author
    9 months ago

    Hi potter, that’s a sad and frustrating story indeed. Glad it worked out in the end, though. Thank you for sharing your situation. It’s always a pleasure to hear from you.

    –Kim

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