Patient Journey Map for Multiple Sclerosis
Multiple Sclerosis is an autoimmune disorder and degenerative nerve condition that is unpredictable and has no cure or known cause. There are some identified risk factors involving co-morbid medical conditions and geography, but there is no guarantee those with the risk factors will develop MS. Patients can live long and prosperous lives with MS due to the medical field's ability to slow the progression of the disease. Many patients live an average lifespan with intermittent periods of MS relapses.
In most cases, patients who end up diagnosed with the MS live very normal and happy lives until their first symptom appears. Most have no idea they have any risk for the disease. The most common sign that appears early on is changes in vision.
L. Merredith describes her first symptom: 'It happened simply, without warning, no reason. When I woke, there was white, endless, empty white. Half of my vision was missing, stolen in the night when I slept and could not defend myself.'
Once a patient has their first episode, they aren't immediately diagnosed with MS. They spend agonizing days or even months wondering what caused their symptoms with little to no information on what it might be. MS diagnosis requires two symptomatic episodes that last at least 24 hours, and it is a diagnosis of exclusion. Patients may end up going to multiple doctors in one day or over a week to determine what is causing their symptoms.
Several disease processes have similar symptoms to MS and have to be ruled out as the cause of the current symptoms. Among the common impostors that need to be ruled out are Lyme disease, syphilis, HIV/AIDS, sarcoidosis, genetic disorders, brain tumors, vitamin deficiency and structural damage to the brain or spinal cord, such as a herniated disc.
L. Merredith goes on to explain that she went to her family physician and was immediately sent to an eye doctor and then directly sent to a neurologist. After multiple tests, the neurologist informed her she had MS and started discussing treatment options. The first two doctors both were unable to hide their shock and terror for her, which caused her heart to race wondering what could wrong.
Another patient (who goes by Kim) states that she woke up one morning with no feeling, sensation or use of the left side of her body. She went to the hospital and spent five days going through test after test until she was told that she had MS.
This is a common experience for many MS patients because of all the conditions that can present like MS. They will go through blood tests, imaging tests, spinal taps, a test of their neuron's potentials, and physical tests, such as their gait.
There are four types of MS: relapsing-remitting MS (RRMS), primary-progressive MS (PPMS), secondary-progressive MS (SPMS) and progressive-relapsing MS (PRMS). The most common form of MS to be diagnosed with initially is RRMS which accounts for 85% of new onset MS. If RRMS is left untreated, it will turn into SPMS within ten years of initial diagnosis of RRMS. About ten percent of patients are initially diagnosed with PPMS which is one of the more active forms of the disease. The rarest form of MS is PRMS which accounts for five percent of cases and refers to patients who have clear relapses and a steady progression of the disease.
If the patient has not had two episodes of MS symptoms, they can be diagnosed with Clinically Isolated Syndrome (CIS). This does not mean the patient has MS, but it that they are at risk for possibly developing it in the future. Some patients will receive this diagnosis and never develop MS.
The disease does not have a cure, and treatment involves treating symptoms and attempting to slow the progression of the disease. Patients can take medications, seek mental health counselors and work with physical therapists to help keep their muscles as healthy as they can.
Kim states that her treatment initially started with steroids in both pill and IV form. For her, the IV form was dangerous because she was a recovering addict. The problem she noticed with the pill was that it made her angry, so the injections became the more common route for the mother of two young kids.
Gooch72 relates that he lives his life appointment to appointment. He can't drive so he has to use medical transit to get around, and his day is dictated by when he can be picked up and what appointments he has to ensure he gets to throughout the day. Some appointments could simply be a test of how his MS is progressing and others may include MRIs or more invasive tests for a more definitive idea of where he is in the disease progression.
Most of the forms of MS involve periods where the patient has symptoms and then times when they get better or simply don't have any symptoms. These times can be stressful for patients because they never know when the next relapse will happen and what it will be. Will they be able to walk? Will they finally have to make the call for an at-home provider to take care of the day-to-day? When they have a relapse will they recover like they usually do or will they start progressing more through the disease process?
During this time, patients seek out mental health counseling and physical therapy to do whatever they can to strengthen themselves against the disease. They will still see doctors and therapists on a regular basis to check progress, and they might even look into participating in medical research to try to slow the disease even more if they can.
For the most part during this period patients can live a mostly normal life, but they live in fear of the next relapse.
Patients with MS can relapse at any point in time. There is no way to predict when they will or what will happen when they do. A small percentage of patients will just have progressive MS and no defined periods of remission. When a patient has a relapse, they are prescribed steroids to help deal with the inflammation, but the side effects of the steroids can cause additional problems.
As Kim related above the pill made her angry all the time, and the IV injection caused her to have possible relapses into her prior drug addiction.
L. Merridith says that the worst part of the disease has not been the relapses, but the end of her marriage. The constant struggle and unknowing of the condition proved too much for her husband. She was diagnosed with MS a few days before her wedding, and two years later she was filing for divorce because of the inconsistent relapses and unpredictability of the disease.
Patients will continue cycling through remission, relapse, and treatment the rest of their lives. Each time, they don't know if they will recover or if the disease will move into a more progressive state. It is hard for family and friends to understand what the patient goes through and how they can help. It is also tiring for those who do help because as the disease progresses patients need more and more support. They can care for themselves, but it takes longer to perform tasks on their own because they get tired very quickly. Unfortunately, there is still no cure for the disease, but there is a lot that can be down to slow the progression and give patients a longer life.