Rare forms of MS and related conditions

All this evidence helps doctors tell the difference between conditions like tumefactive MS, Balo’s concentric sclerosis, neuromyelitis optica (NMO) and lupus. The differences between conditions can affect the treatments you’re offered.  

If you’ve been diagnosed with any form of MS, or you’re still waiting for a diagnosis, our MS Help Hub can support you.

Jump to:

• Tumefactive multiple sclerosis
• Neuromyelitis optica (NMOSD or NMO)
• Acute disseminated encephalomyelitis (ADEM)
• Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD)
• Transverse myelitis
• Balo's concentric sclerosis
• Lupus

Tumefactive multiple sclerosis

Tumefactive MS is a rare type of MS that causes inflammation in the brain that looks like a tumour on a brain scan. Very occasionally, symptoms caused by the tumour-like growth can cause severe complications or even be fatal. But this is rare these days, because modern immune medications can be used to control the inflammation. For most people, tumefactive MS becomes relapsing remitting MS over time. 

Tumefactive MS is not the same as being diagnosed with ‘tumefactive demyelinating lesions’. Tumefactive demyelinating lesions have a range of causes (including a condition called MOGAD. Lots of people diagnosed with tumefactive demyelinating lesions don’t turn out to have MS. 

What are the symptoms of tumefactive multiple sclerosis? 

Some of the common symptoms of tumefactive MS are different to common symptoms of other types of MS. For example, tumefactive MS symptoms often include: 

• confused thinking
• trouble understanding what people say
• seizures

How is tumefactive multiple sclerosis diagnosed? 

Tumefactive MS doesn’t show up in the usual way on an MRI, so this can make it harder to diagnose. Other causes need to be ruled out. Tests to help diagnose tumefactive MS include: 

• blood tests
• a lumbar puncture to test spinal fluid
• an MRI brain scan using 'spectroscopy' (which can help tell the difference between inflammation and a brain tumour)
• a brain biopsy – an operation to take a tiny sample of brain tissue. The brain tissue can reveal the diagnosis down a microscope

Treating and managing tumefactive multiple sclerosis

Treatments for tumefactive MS depend on how it affects you. Sometimes people are diagnosed but don’t have symptoms, although that is rare. If you have no symptoms, you might not be offered any immediate treatment.

If you have symptoms from tumefactive MS, treatments could include: 

• corticosteroids to reduce the inflammation in the brain or spinal cord
• plasma exchange to dampen down the immune system
• some disease modifying drugs used for MS, which can help prevent attacks from the immune system
• the drug rituximab, if the diagnosis is uncertain in the early stages 

Contact our MS Help Hub for information and support with tumefactive MS

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Neuromyelitis optica (NMOSD or NMO)

Neuromyelitis optica happens when your immune system mistakenly attacks parts of your nervous system. NMO affects eyesight or movement. Neuromyelitis optica has several names. It’s sometimes shortened to NMO or in recent years NMOSD. NMSOD stands for neuromyelitis optica spectrum disorder. An older name for NMOSD is Devic’s disease, named after the neurologist who first described it. 

Doctors used to consider neuromyelitis optica a rare form of MS, but it’s now seen as a separate condition. 

What are the symptoms of neuromyelitis optica (NMOSD)? 

NMOSD can cause inflammation (swelling) around the optic nerve that goes from the eye to the brain. It can also cause inflammation in the spinal cord or in the brainstem. The symptoms vary depending on where the inflammation happens.

Neuromyelitis optica symptoms can come and go, like MS relapses do. Symptoms sometimes remain after the attack and they can include: 

• reduced vision in one or both eyes
• muscle weakness, spasms or stiffness 
• bladder or bowel problems
• sexual difficulties 
• uncontrollable hiccups
• itching or unpleasant sensations which are sometimes painful

How is neuromyelitis optica diagnosed?  

Test results can diagnose neuromyelitis and tell it apart from MS, including: 

• blood tests – almost 90% of people with NMOSD have antibodies that show up in blood tests 
• MRI scans – these often look different to MS scan results 

A neurologist will also do neurological examination and ask about your symptoms now and in the past. And as with MS, diagnosing neuromyelitis optica means ruling out other conditions, especially if the blood test doesn’t show NMOSD antibodies. 

Treating and managing neuromyelitis optica

There’s no cure for NMOSD, but there are treatments and ways to manage it that your doctor might suggest, including: 

• corticosteroids like the ones used for MS - to speed up recovery from an attack, and reduce the risk of permanent symptoms 
• plasma exchange (plasmapheresis) – to reduce inflammation if steroids aren’t working. This involves taking out some of the plasma from your blood and replacing it with donated plasma
• intravenous immunoglobulin (IVIG) – another treatment to reduce inflammation, by replacing the antibodies in your blood plasma 
• drugs to suppress parts of the immune system – to reduce or prevent future relapses. This could include rituximab (a drug being researched for MS), prednisolone, azathioprine, mycophenolate, or methotrexate. 

Find support and information about neuromyelitis optica from the Transverse Myelitis Association

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Acute disseminated encephalomyelitis (ADEM)

Acute disseminated encephalomyelitis, or ADEM, is a rare neurological condition. Like MS, it causes inflammation in your central nervous system. ADEM most often happens after a viral or bacterial infection. Symptoms include a headache, confusion, weakness and numbness. It can happen to anyone but affects children more often than adults. It usually only happens once, but it is possible for ADEM to happen again.

What are the symptoms of Acute disseminated encephalomyelitis (ADEM)? 

ADEM symptoms can include: 

• fever
• headache
• nausea or vomiting
• confusion
• fatigue
• numbness or tingling
• difficulty swallowing
• optic neuritis
• muscle weakness
• bladder or bowel problems
• reduced vision 

How is ADEM diagnosed? 

Diagnosing ADEM usually involves lots of the same tests used to diagnose MS. ADEM is usually diagnosed in hospital during the attack. Neither ADEM nor MS have a single test that can confirm a diagnosis. So a neurologist puts together the evidence of lots of tests, your symptoms, and medical history to get to the diagnosis. 

Diagnostic tests for ADEM often include:

• blood tests 
• an MRI scan
• a lumbar puncture to test the spinal fluid

Doctors will look for any underlying causes for the ADEM attack. For example, a blood test or test of the spinal fluid might reveal bacteria or a virus. A condition called MOGAD can cause ADEM. 

For most people, ADEM is a one-off condition, but it can happen more than once. Some people who have ADEM more than once are diagnosed with MS.

Treating and managing ADEM

Treatments for ADEM reduce the inflammation in the brain and spinal cord that's causing the symptoms. To help you treat and manage ADEM your doctor might suggest: 

• corticosteroids 
• intravenous immunoglobulin (IVIG)
• plasma exchange (plasmapheresis)

Any of these treatments are likely to happen at hospital. But you might be given a few weeks of tablet steroids to keep on taking at home. This can be longer if blood tests show certain antibodies have caused the attack.

Treatments usually start to work after a few days. But it can take weeks or months to recover. Some people are left with some ongoing symptoms to manage. 

Find support and information about ADEM from the Transverse Myelitis Association 

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Transverse myelitis

Transverse myelitis is a rare condition that affects the nerves in the spinal cord. Because messages in the spinal cord affect other parts of the body, this nerve damage can cause different symptoms. 

Transverse myelitis can be caused by MS, NMOSD, ADEM and MOGAD, as well as certain bacteria or viruses. Sometimes doctors can’t discover the cause. They can still suggest treatments and ways to manage it, whatever the cause. 

What are the symptoms of transverse myelitis? 

Transverse myelitis symptoms vary, depending on where the damage happens in the spinal cord. The symptoms can be similar to MS symptoms. With transverse myelitis that isn't caused by MS, symptoms can very quickly become quite severe. That’s much less common with MS. Common transverse myelitis symptoms include: 

• unusual sensations including numbness and feeling extra sensitive to touch
• pain
• bowel and bladder problems
• muscle weakness or spasms
• balance and walking problems
• sexual problems

When transverse myelitis is not caused by MS, the symptoms more often affect both sides of the body together. MS symptoms more often affect one side of the body. 

How is transverse myelitis diagnosed?

To diagnose transverse myelitis a neurologist will make a careful record of your symptoms and medical history. There’s no single test for transverse myelitis, so they’ll need evidence from different tests to help them make the diagnosis. Tests for transverse myelitis could include: 

• blood tests
• an MRI scan
• a lumbar puncture to test spinal fluid

Treating and managing transverse myelitis

Some of the treatments for transverse myelitis depend on what’s causing it – and if doctors know the cause. There are treatments in the short term and, if you need them, ways to treat and manage transverse myelitis in the long term. 

Some people recover completely from transverse myelitis over the course of a few months. For others, it might take many more months or even years. Some people need to manage lasting symptoms from their transverse myelitis.

Short-term treatments for transverse myelitis can include: 

• corticosteroids
• plasma exchange therapy (sometimes called plasmapheresis)
• intravenous immune globulin (IVIG)
• treatments for symptoms like pain, muscle spasms, bladder problems or depression.
• treatment for infection if this is the cause 

Long-term treatments for transverse myelitis can include:

• rehabilitation to help you recover and prevent knock on issues. For example, helping you get mobile again as soon as you’re able
• treatments and ways to manage symptoms that might remain

Find support and information about transverse myelitis from the Transverse Myelitis Association

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Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD)

Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) can be the cause of ADEM, optic neuritis or transverse myelitis. 

Like MS, MOGAD is when the immune system attacks the protective layer around nerves in the brain or spinal cord. 

What are the symptoms of MOGAD? 

Common MOGAD symptoms include changes in sight, muscle weakness or problems with coordination. The symptoms of MOGAD depend on which areas of the central nervous system are affected. The central nervous system is the brain, spinal cord and optic (eye) nerve. When MOGAD affects these different parts it can be the underlying cause of other named conditions: 

• the optic nerve: optic neuritis 
• the spinal cord: transverse myelitis 
• the brain: ADEM (acute disseminated encephalomyelitis)

MOGAD can affect more than one of these areas of the central nervous system at the same time. 

How is MOGAD diagnosed? 

MOGAD is diagnosed in a similar way to MS, using several tests, and checking your symptoms and medical history. There’s no single test for MOGAD. Tests for MOGAD include: 

• blood tests
• an MRI scan
• a lumbar puncture to test the spinal fluid 

Treating and managing MOGAD

MOGAD is treated by reducing the inflammation in the central nervous system that's causing the symptoms. You might also have treatment to help prevent attacks of symptoms in future. 

Treatments for a sudden attack of MOGAD symptoms can include: 

• corticosteroids
• plasma exchange 
• intravenous immunoglobulin (IVIG)
• tablets to dampen down the immune system

Long-term treatments to prevent MOGAD relapses can include: 

• mycophenolate mofetil
• rituximab 
• azathioprine
• IVIG infusions or subcutaneous immunoglobulin injections

Neurological rehabilitation can also help you manage the symptoms of MOGAD. That could include physiotherapy and occupational therapy. 

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Balo's concentric sclerosis

Balo's concentric sclerosis is a rare neurological condition that affects nerves in the brain and spinal cord. It used to be considered a type of MS. These days, lots of scientists and doctors think it’s a different, but similar, condition. Some people diagnosed with Balo’s concentric sclerosis go on to develop MS, but not everyone. 

It’s called Balo’s concentric sclerosis because a Dr Balo first described in 1928. And he could see target shaped (concentric) rings through the microscope. This same shape shows up on MRI scans today. 

Most people who develop Balo’s concentric sclerosis are of Han Chinese or Filipino descent. 

What are the symptoms of Balo's concentric sclerosis? 

Lots of symptoms of Balo’s concentric sclerosis are like MS symptoms, but severe symptoms might appear more suddenly. 

How is Balo's concentric sclerosis diagnosed? 

To diagnose Balo’s concentric sclerosis, a neurologist will usually use several tests, and ask about your symptoms and medical history. Tests to help diagnose Balo’s concentric sclerosis can include:

• blood tests 
• an MRI scan 
• a lumbar puncture to test the spinal fluid 
• a brain biopsy – testing a tiny sample of brain tissue

Treating and managing Balo's concentric sclerosis

Treatments for Balo’s concentric sclerosis are usually ones used for MS and other conditions, including: 

• corticosteroids to reduce inflammation in the brain and spinal cord
• certain disease modifying drugs for MS including natalizumab or rituximab. Both of these are types of drugs called monoclonal antibodies

You might also have drug treatments to help manage symptoms like muscle spasms or pain. And your health care team can give advice about other ways to manage symptoms. 

If you or a loved one has Balo’s concentric sclerosis, you can contact our MS Help Hub for support and information

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Lupus

Like MS, lupus is a systemic autoimmune condition. That means your immune system mistakenly attacks different parts of the body. Inflammation can affect the skin, blood, joints, and internal organs like the heart, kidneys and lungs. 

Lupus can also affect the eyes, brain, spinal cord and peripheral nerves. When this happens, it’s sometimes called neuropsychiatric lupus or neuro-lupus.

MS causes inflammation only in the brain, spinal cord or optic (eye) nerve. But when lupus affects these same areas, it can cause similar symptoms to MS. So telling them apart for diagnosis can be difficult. 

Both MS and lupus are more common for women than men. Lupus is more common for people with Black and Asian backgrounds than for White people. 

What are the symptoms of lupus? 

The symptoms of lupus depend on where inflammation happens, but common lupus symptoms include:  

• joint or muscle pain, or chest pain when you take a breath 
• headaches
• rashes on the skin, especially on the cheeks and nose
• fever (high body temperature)
• hair loss
• fatigue

Not everyone gets all these lupus symptoms, and people have different combinations of symptoms. The symptoms of lupus usually come and go, with flare-ups and times when they fade away completely or partly. The symptoms you experience can change over time. 

Sometimes the damage lupus causes can lead to other health conditions, including light sensitivity, dry eye, and heart or kidney problems. So you might get treatment for the lupus symptoms and for other conditions caused by the lupus. 

How is lupus diagnosed? 

Although the symptoms can be similar to MS, several of the tests to diagnose lupus are different. Lupus and MS can both be difficult to diagnose, partly because they don’t have a single diagnostic test. Instead, doctors need to consider evidence from lots of different tests, and a detailed record of your symptoms and medical history. Tests to help diagnose lupus include:  

• blood tests 
• urine tests
• a skin or kidney biopsy – testing a tiny sample of skin or kidney 

Unlike MS, blood tests for lupus usually show signs of systemic inflammation (not just inflammation in the brain, spinal cord or optic nerve). Blood tests can also detect different antibodies in the blood. It’s rare to have lupus that affects the brain, spinal cord or optic nerve and doesn’t also affect other parts or have different blood test results. 

Treating and managing lupus

There are treatments for lupus symptoms and ways to manage the condition and reduce the damage it causes. To help you treat and manage your lupus, your doctor might suggest: 

• hydroxychloroquine 
• ibuprofen
• corticosteroids
• drugs to dampen down the immune system
• treatments if the lupus causes other conditions like anaemia, high blood pressure or osteoporosis 

Health care professionals can also suggest things to try yourself to manage your lupus. That could include staying active, avoiding sun exposure and getting enough sleep. 

Find support and information about lupus from Lupus UK

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