The diagnosis of Multiple Sclerosis as told by Carenity members
Feb 12, 2019
Our members affected by Multiple Sclerosis have told the story of their diagnosis! Symptoms, emotions, examinations, relationships with their doctors, treatments... read their story of diagnosis.
Carenity survey of 120 MS patients in the United Kingdom.
On average, patients waited 2 years to be diagnosed and the majority consulted 3 doctors before reaching their diagnosis.
The journey to being diagnosed with MS can be long, with the average journey to diagnosis being 2 years after showing symptoms. During this period, respondents said that they experienced different symptoms. These ranged from different severities but the majority of patients complained of the following:
Impaired vision| Optic neuritis | Fatigue | Numbness | Pins and Needles| Stumbling/Impaired mobility | Loss of balance | Tremors | Lazy eye | Weakness
Before the diagnosis: the impact of MS
We asked our members what aspects of the their daily life had been affected by these symptoms caused by MS?
Hobbies and activities - 71%
Chronic fatigue- 68%
Professional life - 65%
Love life - 65%
Social life - 55%
Family life - 55%
Chronic pain - 40%
The majority of respondents reported that their social life was the biggest impact on their daily life before the diagnosis. Fortunately, 15% of respondents reported only one impact on their daily lives before reaching a diagnosis and experiencing chronic daily pain was the least chosen impact but chronic fatigue was a daily feature.
Before diagnosis, only 38% of patients did their own research on the Internet concerning their symptoms and they reported using websites such as the MS Society and MS Trust. However, several respondents sought advice from loved ones who were in the healthcare profession or they had family members who were previously diagnosed with MS and they recognised the symptoms.
Many respondents didn’t try any alternative therapies for their MS such a homeopathy, with only 18% having responded positively. However, those who did try alternative therpaies used CBD oil, acupuncture, reflexology, reiki, aloe vera juice and tablets and osteopathy.
Being diagnosed with MS: what you had to say
For many diseases, the road to be diagnosed is peppered with misdiagnosis. However, with MS, only 20% of patients had a misdiagnosis before discovering their MS.
According to Carenity members, they were most frequently misdiagnosed with having a minor stroke, stress, osteoarthritis, mental illness, Guillain-Barré-Strohl Syndrome and Vitamin B12 deficiency.
Although only 20% of members reported a misdiagnosis, this caused them considerable stress. One member said that their GP wrote to them and told them to, "get on with things" while another member said they feared that they had a brain tumour and they were "not socialising" due to the stress and pressure.
The shock of the diagnosis
For some people after years of searching for a diagnosis and not being able to properly label their condition, being diagnosed came a massive relief. For others, it was a shock and a traumatic event. How did Carenity patients react to their diagnosis?
It wasn’t a shock, I was expecting it - 43%
It was a relief - 38%
It was horrifying - 23%
It was brutal - 20%
I didn’t feel anything in particular - 10%
Finding out that you have MS can be a frightening event but surprisingly, 43% said they were expecting it while 5% of patients can’t remember how they felt at all.
The role of doctors and healthcare professionals
The role of the healthcare professional making the diagnosis is key. Sometimes patients do not feel sufficiently listened to or informed about their condition. The good news is that the majority of Carenity members felt that their doctor took their time telling about their MS diagnosis whilst also being calm and emphatic. The main problem members found with their doctor was the feeling that they didn’t care and they were cold and distant delivering the diagnosis.
Some comments from respondents said that they appreciated that their doctor was "straight forward" and "matter of fact". Several respondents said they found out about their MS through a letter sent to them which they found "cold and upsetting".
Fortunately, over all the majority of respondents were positive about their doctors. One member said, "I appreciated that the consultant took time to explain everything. The fist thing he said was that I wasn't necessarily going to end up in a wheelchair". The following statistics show how members felt their doctors reacted:
63% - The doctor was very calm
53% - The doctor took the time to explain
38% - The doctor was very emphatic
10% - The doctor offered offered psychological support
16% - They were cold and distant
15% - They looked like they didn’t care
9% - They were too fast explaining
6% - They used cold and scientific language
The patient's struggle when facing MS
We asked our members how they felt emotionally after receiving their diagnosis, whether they felt renewed with determination now they had a name for their condition or despair for their future medical journey. Many members responded having felt several emotions at once and this is what they had to say:
61% of patients felt relieved by the diagnosis but this was coupled with 55% feeling a great deal of anxiety. This anxiety was coupled with shock and surprise, according to 37% of respondents. 30% reported feeling lost, confused and alone, 16% felt anger about their diagnosis, 13% of patients had the sensation of being misunderstood whilst only 3% felt discouraged.
Unfortunately, only 39% felt determined to fight the disease and 5% had confidence for the future while 19% felt despair.
How can diagnosing MS be improved?
The above statistics about how patients felt following their diagnosis paints a sad picture for those facing a diagnosis of MS. We asked our members how they felt the process could be improved and a lot of respondents said they would have appreciated more support following the initial diagnosis.
"I should have been told about what I could do to try and alleviate the symptoms, diet etc and been told where to go for advice, how this may effect my job, any benefits that I might be entitled to etc, basically none of the happened, I seemed to slip through the cracks"
"All diagnosis should be followed with an interview with an MS Nurse ASAP"
Members reported feeling such a shock they found it difficult to take in what the doctor was saying. One respondent reported, "When I was told, all I could remember afterwards was that I had MS. I couldn't remember all the other things the doctor had told me. It would be good if they had somebody who could take you aside, make sure it had sunk in, and then patiently explain anything the persoon need to know."
Many members said they wished they had been told to bring someone with them for the diagnosis because it was very difficult facing such news alone.
One account said "I wasn't expecting the diagnosis and had gone to the appointment alone. I cried all the way home" and this is echoed in other member's suggestions for improvement, "the hospital should tell you to bring some one with you."
The most resounding suggestion to improve diagnosis is simply to provide the patient with more information about their MS and what they can expect going forward. This is what members had to say:
"The staff were very supportive but wish I had been given more details and information about my illness and anything to look out for"
"More details should be given to patients - my neurologist did not even tell me which type of MS I had, he just said "not the bad one". It should be explained in the initial appointment, instead I was given a second appointment (about 6 weeks later) with an MS nurse who would explain further and talk about treatments"
Patients want their doctor to, "Not to be so brutal or matter of fact. Consider the patient and their feelings. Ask if they have heard of MS. Make them aware of the support available" and they "should explain things with care and understanding"
Patients feel that their doctor should spend more time explaining to them and have a faster follow-up appointment with a MS nurse. Patients felt they should should be supported through knowing their rights as someone with MS and be given more details on how to alleviate symptoms and improve daily life.
And what is your story?
Let's share our experiences and that of our loved ones in the comments on this article to improve diagnosis and help raise awareness of MS!