Medical Matters > Multiple Sclerosis

ME Essential Summer 2022

Question

I was given a diagnosis of CFS by my GP (who won’t use the term ME) just over a year ago. This was based on symptoms and some blood tests (which were all normal) to rule out other possible causes. I have all the main symptoms of ME/CFS – fatigue, poor memory and concentration, unrefreshing sleep – as well as some of the less common ones. I also have a close friend with multiple sclerosis (MS) and I’ve been struck by the similarity of some of my other CFS symptoms – tingling feelings and occasional loss of sensation, eye symptoms, being unable to tolerate hot weather – to those of multiple sclerosis. Is this something I should discuss with my GP? I should also point out that my ME/CFS came on very gradually – there was no obvious triggering infection – and that my level of health and disability has fluctuated quite a lot over the past year, often for no obvious explanation.

Answer

There are a number of symptoms that can occur in both ME/CFS and MS – fatigue, cognitive dysfunction, pins and needles/sensory disturbances, poor balance and co-ordination, pain and problems with temperature control – as well as other symptoms that are not common to both conditions. For example, people with ME/CFS may report visual symptoms such as blurring of vision when tired but they do not get optic neuritis/loss of vision in one eye or swallowing difficulties (unless severe) – both of which can occur in MS. So it can sometimes be difficult, even for a neurologist, to be certain on the basis of symptoms that someone definitely has ME/CFS or MS.

There are investigations – including MRI brain scans, evoked potentials (which measure brain wave activity) and a lumbar puncture, as well as abnormal findings on clinical examination, that can normally (but not always) help to confirm a diagnosis of MS. From what you say, you ought to go and discuss this situation with your GP and ask whether you do need to be referred to a neurologist, preferably one who knows something about ME/CFS – where any confusion over diagnosis could hopefully be resolved through a proper clinical assessment.

NHS: Symptoms of Multiple Sclerosis

The symptoms of MS vary widely from person to person and can affect any part of the body. The main symptoms include:

    • fatigue
    • difficulty walking
    • vision problems, such as blurred vision
    • problems controlling the bladder
    • numbness or tingling in different parts of the body
    • muscle stiffness and spasms
    • problems with balance and co-ordination
    • problems with thinking, learning and planning

Depending on the type of MS you have, your symptoms may come and go in phases or get steadily worse over time (progress).

NHS: What causes Multiple Sclerosis?

MS is an autoimmune condition. This is when something goes wrong with the immune system and it mistakenly attacks a healthy part of the body – in this case, the brain or spinal cord of the nervous system. In MS, the immune system attacks the layer that surrounds and protects the nerves called the myelin sheath.

This damages and scars the sheath, and potentially the underlying nerves, meaning that messages travelling along the nerves become slowed or disrupted. Exactly what causes the immune system to act in this way is unclear, but most experts think a combination of genetic and environmental factors is involved.

NHS Choices: Multiple Sclerosis | March 2022

Research

In summary, it is apparent that both patient groups have many serious symptoms and functional limitations. This has epidemiologic significance, as both illnesses affect many Americans, with CFS prevalence rates of 0.42% versus MS rates of 0.09%. In addition, some patients have both sets of symptoms, with some estimating that 14% of patients with MS have the CFS Fukuda et al. symptoms.

However, these are distinct illnesses, as MS represents an exclusionary illness for a CFS diagnosis. The finding that ME and CFS group had more functional limitations and more serious symptoms than those with MS provides additional evidence to the seriousness of ME and CFS.

Continued research to further compare ME and CFS with other chronic conditions can inform improved methods for differentiating the conditions for the purpose of diagnoses, treatment, and understanding etiology.

Differentiating Multiple Sclerosis from Myalgic Encephalomyelitis and Chronic Fatigue Syndrome | June 2017

  • Please let us know if you have experienced a similar problem and had to query the diagnosis of ME/CFS with your GP: Feedback@meassociation.org.uk

MEDICAL DISCLAIMER

Medical Matters is for information purposes only. The answers provided by Dr Shepherd and the ME Association’s other expert advisers should not be construed as medical advice. We recommend that any information you deem relevant is discussed with your GP as soon as possible. It is important to obtain advice from a GP who is in charge of your clinical care, who knows you well, and who can consider other likely causes for symptoms. Seek personalised medical advice whenever a new symptom arises, or an existing symptom worsens. Don't assume that new or worsened symptoms are a result of having ME/CFS.

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