The experience of symptoms (see ‘First symptoms‘) led sooner or later to consulting a doctor, to having tests and to being given a diagnosis. This wasn’t always a straightforward process and there were a lot of different experiences among the people we spoke to. Diagnosing Multiple Sclerosis (MS) is often a difficult and lengthy process, for several reasons. Firstly, there are no specific symptoms which would immediately suggest the diagnosis and there is no definitive test which would confirm it. Next MS is comparatively rare and it affects people in many different ways. The early symptoms are often quite mild and could be caused by various other conditions. These need to be ruled out before a diagnosis of MS is given. Progression of symptoms over time provides evidence to support the diagnosis.
Many of the people we talked to spoke about their relative experiencing symptoms for months, years or even decades before finally getting a diagnosis. Most people, once they went to their GP, felt they had been referred promptly to a specialist in neurological conditions. Some talked about doctors being fairly sure that their relative had MS within a couple of months. However, not all were referred to a neurologist so quickly.
Mike talks about his partner getting a diagnosis about two years after her first symptoms. They both found it hard living with the uncertainty.
After living with MS for more than 25 years, Kates husband was diagnosed when they moved house and changed their doctor.
Emma describes a short, intensive period of investigations leading up to her husband’s recent diagnosis.
Anthony’s wife looked for a second opinion after about 5 years of not having a diagnosis.
GP referral to specialist services was sometimes prompt, particularly where the GP was knowledgeable about MS, but people also told us stories of GPs not recognising symptoms, being reluctant to refer or not taking symptoms seriously. This may be because symptoms can be vague at first and may suggest other, more minor, conditions. GPs may not want to worry people unduly, so they look first for other possible explanations.
A GP explains what they would do if someone come to see them with symptoms that may be MS.
Kay talks about her brother’s symptoms being dismissed by the GP as hypochondria. He went to a private doctor instead and was diagnosed.
Paul Y says his GP could not get to the bottom of why his wife kept falling and getting fractures. When they were walking down the road one day a neighbour, who was a retired doctor, suggested they ought to see a neurologist.
Sometimes there were periods of treatment before a clear diagnosis was given. Seeing if someone responds to a treatment can help doctors decide if it really is MS. Paul Z, Dave, Anthony and Ray all talked about their wives having treatment with steroids before being given a diagnosis. Health professionals sometimes accidentally let slip that the treatment was for MS. People often thought that doctors were reluctant to ‘put a label’ on the diagnosis, whether this was because they felt unsure or because they were trying to protect the person from bad news. Diagnosis is now much more open. For example, since 2003 it has been government policy that doctors should offer patients copies of letters that relate to them.
Anthony and his wife didn’t know that she might have MS and were surprised to hear a hospital nurse mention it before she had been diagnosed.
Doctors had apparently known for years that John’s wife had MS but had not told them. He thinks maybe they were trying to protect them from the news.
Ray recalls that the visiting nurse told his wife she was having steroids for MS. When the nurse realised his wife had never been told it was MS, she said she had mixed her up with a neighbour.
Anita and Carole were teenagers when their mothers were diagnosed with MS. They remember being told very little about the illness or what it would mean:
Carole was told the name of her mother’s condition but nothing about how the illness would develop.
Nobody told Anita what was going on when her mother was diagnosed but she remembers tension in the family.
Some peoples’ relatives were diagnosed abroad, followed by confirmation in the UK. Louise was thousands of miles away in the UK when her son was diagnosed in America.
Tony describes how his wife received the diagnosis in Japan. He did not go with her because he didn’t realise what they were looking for.
Dave recalls that, years ago, doctors were reluctant to diagnose, and to tell his wife the diagnosis, both overseas and in the UK.
Louises son was told his diagnosis over the phone in the United States.
Stella was sitting in the waiting room when her husband was diagnosed, she wishes she had known she could have been in the consultation room with him, because he was so shocked.
A diagnosis of multiple sclerosis is based on results from a combination of various tests. These include the patient’s medical history, neurological examination, magnetic resonance imaging (MRI) scans, evoked potential tests, and possibly a spinal fluid test (lumbar puncture).
Dr Richard Warner a MS Nurse Consultant talks about what happens when somebody with MS goes to see a consultant for the first time.
The people we spoke to did not have technical or professional knowledge of the tests and investigations which doctors use to establish a diagnosis of MS. But on the basis of what they remember being told, some spoke of the lumbar puncture as the definitive test. For some it was ‘obvious’ that the person should have this test, but others were reluctant to have it. However, it is not definitive, and these days many specialists regard MRI as more useful and a less invasive test. Even though it too is not definitive, ‘MRI scans confirm a diagnosis in over 90 per cent of people with MS’ (see MS Society website accessed March 2020).
Jeff’s wife preferred not to have a lumbar puncture; the consultant seemed pretty sure that her symptoms meant she had MS.
Ann’s daughter doesn’t want to have a lumbar puncture for the sake of’ getting a diagnosis which would make her eligible for treatment. At the moment the doctors feel they can manage her condition without medication.
Many people recognised that it is not easy to diagnose MS and improvements over recent years in the speed and accuracy of diagnosis were acknowledged. Some people emphasised the need for more information and support at the time of diagnosis.