Multiple sclerosis diagnosis: Carenity members tell their story!

Survey conducted by Carenity among 3,203 patients living with multiple sclerosis in the United States, the United Kingdom, France, Spain, Italy and Germany. 

On average, patients waited almost 4 years to be diagnosed and consulted 3 doctors before reaching their diagnosis.

The journey to being diagnosed with multiple sclerosis can be long, with the average time period to arrive at a diagnosis being almost 4 years (3.9 years) after first sign of symptoms. This period was slightly longer in the United States, with patients waiting 4.5 years before receiving their MS diagnosis.

During this period, respondents experienced varying symptoms with different levels of severity. However, patients most often reported the following symptoms:

Numbness | Optic neuritis | Balance issues | Fatigue | Neuropathy | Tremors | Vertigo | Brain fog | Slurred speech | Bladder issues| Stumbling/impaired mobility | Migraine | Lhermitte's sign | Weakness | Double vision

Before diagnosis: the impact of MS on patients' lives

We asked our members about the impact of MS symptoms on their daily lives. Respondents saw almost every aspect of their daily lives significantly impacted by their MS.

Chronic fatigue - 60%

Leisure and physical activity - 56%

Professional life - 55%

Social life - 44%

Personal life - 43%

Family life - 43%

Chronic pain - 34%

The majority of respondents (60%) reported that they experienced chronic fatigue brought on by their MS, which prevented them from living their lives as they had before. 56% of members across all six countries indicated that their leisure and physical activities were the most affected area of their daily lives. In the United States, however, 72% patients relayed that their personal life was impacted the most by their MS symptoms.

On a positive note, 30% of respondents reported that two or fewer aspects of their daily life were impacted by symptoms prior to diagnosis. Members generally felt that their symptoms impacted their family life the least (43%), and chronic pain affected only 34% of respondents.

Before diagnosis, only 33% of patients did their own research on the internet into their symptoms, and of these patients a majority reported they did their using search engines such as Google, or health-related sites such as WebMD, Mayo Clinic, and MS Society. However, several respondents sought advice from loved ones who were in the healthcare profession or had family members who were previously diagnosed with MS who recognized the symptoms.

The majority of respondents chose not to try alternative treatments for their MS, with only 14% responding that they had. However, those who did try alternative treatments used essential oils, high doses of biotin, massage therapy, medical cannabis or CBD, traditional Chinese medicine, homeopathic remedies, Mindfulness or meditation, nutrition or dietary changes, chiropractic, psychotherapy, and aromatherapy.

Being diagnosed with MS: what members had to say

For many illnesses, the road to diagnosis can be peppered with misdiagnosis. Unfortunately with MS, one in three or 31% of patients were misdiagnosed before discovering their MS. Of those who experienced this, members were most frequently misdiagnosed with:

Neuromyelitis optica| Generalized anxiety disorder | Carpal tunnel syndrome | Chronic fatigue syndrome | Fibromyalgia | Degenerative disc disease | Lupus | Depression | Parkinson's disease | Vertigo

Of the members that experienced misdiagnosis, many described how it caused them considerable stress:

"I started by having periods of extreme fatigue that would pass, however I then got worse and worse. I was diagnosed with lupus first, but then my running was affected and I started falling. I knew something was wrong. By then I had changed primary doctors because my long term doctor wasn't taking my health complaints seriously and I felt it was time. I knew it was more than 'your job is stressful.'"

"It was very hard for me to be confident in my day to day life because I had no idea what was going to happen with me from one moment to the next."

"I have seen countless doctors with countless ideas of what could have been wrong with me. I had several invasive procedures done for an incorrect diagnosis. I had to quit working for long periods of time because I couldn't walk or function. I had to completely change my plans for what I wanted to do for a career. I was on countless medications for incorrect diagnosis that just ended up causing other issues. I was even told that it was all in my head and that I was essentially crazy."

"I should have been diagnosed with MS many years ago, several incorrect diagnoses were made by multiple primary care physicians. My neurologist says that if my diagnosis had been made earlier, they could have stopped/slowed its progression." 

"I saw many different doctors over many different years. No one believed me when I claimed I just didn't feel well. Something wasn't right. They always thought I was looking for some controlled medications, which I never wanted."

"This mistake lasted for years. My family doctor ignored me, and with all my symptoms she never ruled out a possible disease...it was all stress according to her..."

"The confusion went on and on, my GP decided I was just depressed and that was it. She even wrote to me to tell me to 'get on with things'! A substitute doctor whose husband was an MS specialist recognized the symptoms and I was diagnosed in less than a week with PPMS. 10 years wasted..."

"My diagnosis finally came from a neurologist who had dismissed everything as stress symptoms."

The shock of the diagnosis 

Being diagnosed with a chronic illness is life-altering. Getting the news that you have chronic condition can be a different experience from patient to patient: one patient may be relieved to finally be able to put a name to his or her symptoms and be able to begin treatment, but another also see it as frightening or overwhelming.

Here's how Carenity members reacted to their diagnosis:

It was brutal - 28%

It wasn't a shock, I was expecting it - 25% 

It was frightening - 22%

It was a relief - 21%

I didn’t feel anything in particular - 9%

I don't remember - 5%

Finding out that you have MS can be a frightening event, but surprisingly, 25% of members were expecting the diagnosis, while 5% of patients couldn't remember how they felt at all.

The role of doctors and healthcare professionals

The healthcare professional plays a key role in sharing the diagnosis with the patient. Sometimes, patients do not feel sufficiently listened to or informed about their condition. Here's how Carenity members felt:

44% - The doctor took the time to explain
42% - The doctor was very calm
29% - The doctor was attentive and empathetic 
14% - The doctor offered psychological support

13% - The doctor was cold and distant
11% - The doctor went too fast when explaining
10% - The doctor didn't seem to care
8% - The doctor used only scientific jargon

The good news is that the majority of Carenity members felt that their doctor took the time to explain their MS diagnosis whilst also being calm and empathetic. This was particularly true in the United States, where members found that their doctors were especially calm (51%) and that they took their time to explain the diagnosis (49%).

On the flip side, a number of members had a more negative experience with their doctor at diagnosis, finding that he or she was cold and distant or that they went to fast when explaining the MS diagnosis.

Many respondents mentioned that they appreciated that their doctor was "straightforward" and "explained everything in detail". One member wrote, "I appreciated that the consultant took time to explain everything. The first thing he said was that I wasn't necessarily going to end up in a wheelchair".

The patient's struggle when facing MS

We asked our members how they felt emotionally after receiving their diagnosis and many members responded having felt several emotions at once:

While 40% of patients felt a great deal of anxiety about their diagnosis, 34% were relieved to be able to put a name to their symptoms. Through these feelings of anxiety and relief, 31% of patients were determined to fight the disease. 25% of respondents reported also feeling lost, coupled with angry (20%) and shocked (19%).

The diagnosis weighed heavy for many members as well, with 18% of respondents reporting feeling alone, 17% felt discouraged, 14% felt despair, 13% felt misunderstood, and only 10% felt confident for the future.

How can the MS diagnosis process be improved?

We asked our members how they felt the diagnosis process could be improved and many said they would have appreciated more support, information and humanity from the medical team following the initial diagnosis:

"I regret that my doctor made me feel like a job and not a person. Find a doctor that you can trust."

"Doctors should offer more information than just a name of a disease. Explain the symptoms. Give options for treatment. Offer encouragement."

"Doctors should demonstrate empathy and active listening, should answer questions and offer avenues of support other than 'cheesy', 'feel sorry for ourselves' support groups."

"My doctor was extremely kind and helped me understand my diagnosis in simple terms... Big scientific terms are useless when giving a diagnosis like this."

"I should have been told about what I could do to try and alleviate the symptoms, diet, etc. and where to go for advice, how this may affect my job, any benefits that I might be entitled to etc. Basically none of the happened, I seemed to slip through the cracks."

"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 person need to know."

"More details should be given to patients - my neurologist didn't 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."

"It would be nice if patients had a little more support from their loved ones and if psychological support was offered, without having to ask for it."

"Going to the appointment with someone else is paramount. On the other hand, neurologists could avoid making these kinds of announcements while escorted by several interns. It should be a private conversation."

"When the diagnosis is announced, we have to digest the information. There are questions that don't immediately come to mind. A pamphlet or website address should be given to us so that we can inform ourselves quietly afterwards."

Many thanks to all the participants of this survey! Feel free to share your experience with us in our multiple sclerosis forum!

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Take care!