SYMPTOMS

Many symptoms are associated with Degenerative Cervical Myelopathy (DCM), but not all people are affected in the same way. DCM can be progressive, so symptoms may worsen over time, but the rate of progression varies from one person to the next. We currently do not fully understand what a “typical” symptom of DCM is, as people can experience a wide range of symptoms; therefore, we refer to them here as “frequent” and “less frequent” symptoms.

DCM Symptoms

If you have been diagnosed with DCM, you can help us to understand its symptoms by completing our survey The Myelopathy.org Symptom Inventory (MOSI).

Read more about this survey.

Frequent Symptoms

Neck pain and stiffness
Tingling (paraesthesia) or numbness in the limbs (often starting in fingertips or toes)
Clumsiness in the hands (loss of manual coordination/dexterity)
Imbalance, leading to falls
Difficulties with walking, and immobility
Disturbance of bladder function, such as “increased urgency” or incontinence/urinary retention
Pain in the limbs or trunk
Tiredness/fatigue

Less Frequent Symptoms

Disturbance of bowel function
Unilateral or bilateral limb or body pain, weakness or stiffness
Unilateral or bilateral limb or body numbness
Unusual sensory symptoms (dysesthesia)
Chest tightness
Respiratory dysfunction
Hypertension (high blood pressure)
Headaches 
Lower back pain 
Fear/stress/anxiety 
Vision disturbances (upon neck extension) 
Not feeling like yourself/low mood/depression 

Clinical Signs

Increased reflexes
Reduced coordination
Imbalance when eyes are closed
Difficulties tandem walking
Lhermitte’s sign

Pre-Symptomatic

Initially, the compression of the spinal cord may not cause any symptoms, so the affected person may not know that the damage has occurred. This is probably due to the body’s ability to adapt and mask subtle problems, and may also be due to some limited repair of the spinal cord. These subtle changes at present can only be detected using special imaging techniques, which currently are generally confined to research studies.

Early Symptoms

Early symptoms will be subtle. They are often mistaken for “getting older” or another condition. 

In DCM, neurological symptoms may often be combined with symptoms resulting from the underlying wear-and-tear arthritis of the neck, which includes neck stiffness and pain. 

Furthermore, focal compression of nerves exiting the spinal cord, rather than compression of the spinal cord itself, can cause symptoms of radiculopathy, i.e. numbness and pain running into the arms and associated weakness.

However, pain is not always present. 

In the early stages, DCM most commonly affects the hands, causing numbness and clumsiness, and commonly affects walking and balance. However, DCM can also affect the lower legs in isolation initially, incorrectly drawing suspicion of a lower back problem in the first instance.

DCM can occur at any age, but most individuals will be affected in the mid to late stages of life.

Your doctor may not recognise that these varied symptoms have a common cause, particularly in the early stages. Many frontline health professionals report an underconfidence in detecting neurological disease in general. The term “Neurophobia” was coined for this (an avoidance of or unwillingness to investigate neurological patients’ symptoms) and led to NICE Clinical Guidance for Suspected Neurological Conditions (NG127). These guidelines have received significant criticism from the neurological community, including ourselves, as they largely focus on specific conditions (DCM for example is not included) and appear to assume a high level of knowledge amongst practitioners. 

On the positive side, one must see these guidelines as a start and a work in progress. Their shortcomings likely reflect a lack of evidence base in how to detect neurological disease promptly. The early recognition of DCM presents many medical challenges, and delays can significantly worsen outcomes. Urgent progress is required. We are working with the global DCM community to refine the diagnostic criteria and to streamline the chain of referral to specialists.

Symptoms to Recognise

In the absence of a specific framework to support early diagnosis at this stage, alongside being mindful of the more frequent symptoms, our recommendation is to evaluate all symptoms and to look for symptom progression. DCM is typically a whole body experience, involving multiple problems. It is also typically progressive. Recognising this helps to steer away from diseases which may overlap (e.g. carpal tunnel syndrome). 

Acute and Chronic Pain

Pain is a very common symptom of DCM, and managing it can be tricky. You may find the following episodes of our Myelopathy Matters podcast helpful: 

Pain & The Feeling Brain
Pain & The Feeling Brain: Part 2
The Pain Free Mindset

What You Should Do If You Suspect You Have DCM

Where DCM is suspected, an urgent MRI of the cervical spine is required. In many countries this can be accessed directly or via your family doctor. In the UK this will generally require a referral to a secondary care speciality, such as neurology. Regardless, it should be a priority.

Through our work with the Myelopathy.org community, we have identified that people with undiagnosed DCM often first seek help from allied professionals such as osteopaths or chiropractors. In some settings, these professionals can access MRI imaging directly. More often, as in the UK, this will need to be coordinated by a general practitioner. 

Recognising this, Myelopathy.org has worked with the Institute of Osteopathy to produce a letter template to help individuals access an MRI through their general practitioner. It is broadly applicable for any context where DCM has been suspected and an MRI is sought.