Average age of MS diagnosis

Summary

At one time, it was thought that MS rarely developed in people over 50 but opinion is changing as more cases are now being identified. This study looked at the characteristics of MS when it begins over the age of 50.

People in south-east Wales whose MS began at age 50 or above were identified from a regional database of 2654 people with MS. Some distinct differences were found compared with those whose MS began at a younger age. The researchers found that sensory and motor symptoms were more frequently found, there were fewer relapses and faster progression of disability.

The researchers comment that this makes it even more important to identity this group and to ensure that they have the support they need from MS services.

Background

MS is often diagnosed when someone is in their twenties or thirties. At one time, it was thought that MS rarely developed in people over 50 but opinion is changing as more cases are now being identified.

Diagnosing MS can be difficult in a person of any age but there are additional challenges as people get older. This is because there are other age related conditions which need to be taken into consideration when deciding what the correct diagnosis might be. In addition, there is little information available on the long term pattern of MS in people who develop it late in life.

How this study was carried out

People in south-east Wales whose MS began at age 50 or above were identified from a regional database of 2654 people with MS. The over 50’s group was named “late onset MS” and was compared with an adult (under age 50) onset group.

The medical notes of the late onset group were reviewed to see what diagnoses were considered apart from MS.

What was found

132 people (5.2%) had late onset MS which had begun between the ages of 50 and 72. Some distinct differences were found:

  • Over half (58%) of the late onset group were women as compared with just over two thirds (70%) of the adult onset group.
  • Almost half (47%) had primary progressive MS (PPMS) whereas less than one in ten (9%) had PPMS in the adult onset group
  • The average time from first symptoms to diagnosis was 2.7 years as compared with 4.6 years
  • People in the late onset group were more likely to test negative when cerebrospinal fluid from a lumbar puncture was analysed for oligoclonal bands (23% as compared with 16%)

In four out of ten (42%) cases of late onset MS, no other diagnosis was considered likely and so diagnosis was made more rapidly (on average after 1.8 years).

For those where other possible diagnoses were considered, it took an average of 3.2 years to come to the definite diagnosis of MS. The most common possibilities considered were cerebrovascular disease (16%), degenerative spinal disease (8%) and motor neurone disease (6%).

The most common first symptoms were sensory and cerebellar symptoms for the older age group whereas optic neuritis was most common in the adult onset group.

The late onset group had about half as many relapses in the first ten years compared with the adult onset group. However, they reached disability milestones more quickly as judged by the time taken to reach a particular EDSS score. For example they took an average of 4.8 years to reach an EDSS of 4 as compared with 15.5 years; an average of 5.7 years to reach an EDSS of 6 as compared with 20.4 years; an average of 16.8 years to reach an EDSS of 8 as compared with 39.0 years. However, as their MS had begun later in life, the late onset group were between five and 11 years older when they got to each disability milestone.

What does it mean?

When MS occurs in adults over 50 it can be difficult to diagnose as it may be quite different from MS in younger adults and because it may appear similar to other conditions which occur in older age groups. The most common differences in the older age group are that sensory and motor symptoms are more frequently found, there are fewer relapses and faster progression of disability.

Once MS has begun, disability progresses more rapidly than in younger people with MS. The researchers comment that this makes it even more important to diagnose the older group and to ensure that they have the support they need from MS services.

More about diagnosing MS

MS can be very difficult to diagnose and it often takes a long time to get a definite diagnosis.

All the symptoms of MS can also be symptoms of other conditions so the neurologist has to work out which of all the possibilities is the correct one. This can mean lots of tests to rule out other conditions and then more tests to see if it might be MS. It is sometimes a question of watching and waiting to see how symptoms develop as this can help distinguish MS from the other possibilities. All this can be very frustrating and worrying but it is quite a common experience.

Tests used in the diagnosis of MS

There is no simple test for MS which will say “yes” or “no” like a pregnancy test. The neurologist has to take a multi-pronged approach and use their experience to decide if it is MS or not. Sometimes, it is still impossible to be absolutely certain.

Neurologists will usually ask about any history of unexplained symptoms.The most common next step is to have an MRI scan which can detect the tiny scars caused by MS. These show up as little white patches in the brain and spinal cord and are usually called lesions. Everyone gets more white patches in their brain as they get older so the neurologist has to judge if they are all age-related or possibly due to MS. Sometimes a chemical called gadolinium is injected into a vein before the scan as it can help the radiologist and neurologist distinguish between active MS lesions and old areas of scarring.

Some people will have a lumbar puncture also known as a spinal tap. In this test, a sample is taken of the cerebrospinal fluid which bathes the brain and spinal cord. The fluid can be analysed in the laboratory and if more protein bands are seen than usual (called oligoclonal bands) this can suggest MS.

In some cases, evoked potential tests are carried out. This involves putting small electrodes on the head, arms or legs to measure the speed of messages travelling along the nerves from the eyes, ears or skin on the limbs. If the messages are slowed then this may be due to MS.

The neurologist will review all the test results alongside a person’s medical history to decide if it all adds up to a diagnosis of MS.

Question

Asked by carol

Can A Man In His 60s Get Ms?

my husband just turned 62. he has not been diagnosed with ms, but i feel his symptoms fit relapsing remitting ms. and i am scared!

he had a short episode 2 yrs ago with inability to stop his speech and weakness in legs. i thought “stroke” and gave his an asprin and immediately took him to hospital. all scans and testing -normal. doctors put him on a blood thinner. about 6 mo. ago he had visual impairment at work. this lasted about 8-9 hrs. last weekend he suffered visual, plus motor impairment—legs—and arms with slurred speech. he also seemed altered mentally. this lasted several days. he had 2 mri’s in the hospital. nothing was found.

i hope i am wrong to think ms. isn’t 60 too old for new diagnosis of ms?

carol hensley

Answer

Hey Carol

I am not a doc either…just someone who has MS but…in this case I would trust in science and if he had two MRI’s and nothing is showing up then I am thinking it is unlikely to be MS. Did they do an MRI of his spine as well as his brain? What other tests did they do? And what possible diagnoses did they tell you about?

Now is the time to be assertive and ask what possible explanations there could be for his symptoms. Keep a written record of his symptoms, when they happened, for how long and how intense they were.

In my case I had one isolated symptom of Optical Neuritis over ten years ago, had a scan back then, which didn’t show any lesions. Move forward in time to just a year ago and now the MRI shows lesions. So it is possible to have an MRI which doesn’t show anything and then later the lesions show up.

From what you have said though, I would think by this point in time with his age and with the symptoms you are describing that if it were MS…it would show up on the MRI by now. But again I am not a neurologist. You have to be persistent in asking the docs what could be causing these symptoms and then go through a process of elimination.

I sure hope you get this all figured out soon. I am sure you are very worried. Write back and let us know how things go. Thank you for your question.

It may be because it happened to me, that I am aware of a lot of people getting diagnosed with MS in their 60s…

I came to MS via Orthopaedics after hurting my knee whilst jogging when I was 55. Over the last 12 years, amongst other things, I have paid for private physiotherapy. I have actually asked whether it might be MS, and have been told, ‘No; you are too old; MS is a young person’s disease’…

But as I think back, that was such a silly statement…!!! Anything, medical or otherwise, that has a ‘normal (bell-shaped) distribution’ WILL ALWAYS have outliers, people at extremes, both extra young and extra old. I should have been dx’d at 55-ish after the jogging injury, but, as my new neuro has told me, the previous one ‘got it wrong’, looking at MRI scans.

Nevertheless, I was not young. I had had a lot of life, whether good or bad, and can’t imagine having had this dx in my 20s. That does not mean that I had not intended on enjoying the rest of my life as I grow old, because at 66, I would not feel old if it was not for MS…

But, maybe there were signs of something earlier in my life. In my early teens, I had what was dx’d as ‘growing pains’ as a reason for pain in my knees. My mother gave me some of her Transvasin (?) rheumatism cream to rub into them. As a teenager, I went to school smelling of Transvasin… . This did not increase my limited confidence…!!! Nowadays my MS seems to evolve around my knees with both pain and weakness… Who knows…!!!

Anyway, current research is coming on in leaps and bounds, and is finding lots of exciting things that may help in the future…

Anne

When MS Strikes Later in Life

For example, on a magnetic resonance imaging (MRI) scan of the brain — a key diagnostic test for MS — physicians may not recognize the white matter damage seen in the disease, instead attributing these brain changes to blood vessel disease.

Most MS patients have the relapsing-remitting form of MS. This means they have stretches of time when they experience symptoms — like numbness, tremor, dizziness, and vision problems — alternating with symptom-free periods. A minority have progressive MS, in which symptoms don’t abate and get worse over time.

RELATED: Multiple Sclerosis and Age

Patients whose MS is diagnosed after age 50 are more likely to have the progressive form of the disease, according to Jung Henson, although Van Houten turned out to have relapsing-remitting MS. The condition is diagnosed and treated the same way as it is in people who develop MS at younger ages.

“At that time I didn’t really have any other symptoms. I thought I was just really out of shape,” Van Houten recalls. “I didn’t attribute that to anything other than just a bad day and being out of shape.”

Later, he began feeling a tingling “pins and needles” sensation in his hands, which he thought might be carpal tunnel syndrome. But his doctor ruled out that diagnosis.

A few months after he first experienced symptoms, Van Houten was finally diagnosed with MS. He had noticed his right leg would begin dragging partway through the three- to four-mile walks he and his wife liked to take. He went back to his internist, who ordered an MRI scan that showed evidence of MS in Van Houten’s brain and spinal cord. Given that his daughter developed a severe form of MS at age 28, and subsequently died from the disease, “it looked quite likely that what I had was MS,” he says.

A Healthy Lifestyle Can Help

Van Houten’s doctor prescribed the disease-modifying drug Avonex, which he has been taking ever since. He kept working, until he was diagnosed with a brain tumor in 2006. Van Houten decided to retire soon after undergoing surgery to have the tumor removed.

“My progression has been slow,” he says. “I walk with a cane, I have fatigue, and I take at least one, sometimes two, naps a day, but my vision is good.” His balance is shaky, but Van Houten can still play golf if he uses a cart, and has a portable scooter for outings that require lots of walking, like a visit to a museum.

Van Houten goes to a fitness center every day and rides a stationary bike for about an hour. He’s also careful to eat healthy foods, following a Mediterranean diet. Thanks to his exercise regimen, his right leg has actually gotten stronger.

“It’s very important to be as active as you possibly can be,” Van Houten says. “You have to get out and do as much as you can. It’s a disease that I think can lead to depression if you just hang around the house and don’t go out and socialize and be physically active and things of that nature.”

And experts agree that following a healthy diet, staying active, getting enough rest, and managing stress effectively can help people with MS, regardless of their age, maintain a good quality of life.

Van Houten also recommends finding a neurologist who is knowledgeable about the latest treatments for MS, and seeing that doctor regularly.

Overview


Multiple sclerosis

Types of multiple sclerosis (MS)

MS starts in 1 of 2 general ways: with individual relapses (attacks or exacerbations) or with gradual progression.

Relapsing remitting MS

More than 8 out of every 10 people with MS are diagnosed with the relapsing remitting type.

Someone with relapsing remitting MS will have episodes of new or worsening symptoms, known as relapses.

These typically worsen over a few days, last for days to weeks to months, then slowly improve over a similar time period.

Relapses often occur without warning, but are sometimes associated with a period of illness or stress.

The symptoms of a relapse may disappear altogether, with or without treatment, although some symptoms often persist, with repeated attacks happening over several years.

Periods between attacks are known as periods of remission. These can last for years at a time.

After many years (usually decades), many, but not all, people with relapsing remitting MS go on to develop secondary progressive MS.

In this type of MS, symptoms gradually worsen over time without obvious attacks. Some people continue to have infrequent relapses during this stage.

Around half of people with relapsing remitting MS will develop secondary progressive MS within 15 to 20 years, and the risk of this happening increases the longer you have the condition.

Primary progressive MS

Just over 1 in 10 people with the condition start their MS with a gradual worsening of symptoms.

In primary progressive MS, symptoms gradually worsen and accumulate over several years, and there are no periods of remission, though people often have periods where their condition appears to stabilise.

Primary MS Symptoms

These come from ongoing damage to your myelin. They aren’t pleasant, but your MS treatment team can help you keep most of them under control with medication, rehabilitation, and other tactics. The most common symptoms are:

Bladder and bowel problems: You may have to pee more often, need to go at night, or have trouble emptying your bladder fully. Bowel issues like constipation are also common.

Clumsiness or lack of coordination: MS can make it hard to get around. You might have:

  • Trouble walking
  • A hard time keeping your balance
  • Changes in your gait

Dizziness: You may feel lightheaded. You probably won’t have vertigo, that feeling that the room is spinning.

Emotional changes and depression: It’s tough to adjust to the idea that you have a chronic disease, let alone one that’s hard to predict and that will take a physical toll. Fear of the unknown can make you anxious. Plus the disease damages nerve fibers in your brain, and that can affect your emotions. So can medications, like corticosteroids, used to treat MS.

Eye problems: In addition to the optic neuritis that comes with CIS, MS can cause:

  • Nystagmus: involuntary eye movements
  • Diplopia: double vision

Fatigue: You may feel very tired. It often comes on in the afternoon and causes weak muscles, slowed thinking, or sleepiness. It isn’t usually related to the amount of work you do. Some people with MS say they can feel tired even after a good night’s sleep.

Heat-related problems: You might notice them as you warm up during exercise. You could feel tired and weak or have trouble controlling certain body parts, like your foot or leg. As you rest and cool down, these symptoms are likely to go away.

Muscle spasms : They usually affect your leg muscles. They’re an early symptom for almost half the people with MS. They also affect people with progressive MS. You might feel mild stiffness or strong, painful spasms.

Sexual troubles: These include vaginal dryness in women and erection problems in men. Both men and women may be less responsive to touch, have a lower sex drive, or have trouble reaching orgasm.

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