Each of us has been ill many times. Common colds, tonsillitis, bronchitis, pneumonia—the list goes on. We have all also experienced similar symptoms of the same diseases, such as fever, runny nose, cough—symptoms distinctive enough to allow for efficient diagnosis and treatment. Unfortunately, this is not the case for all illnesses, with multiple sclerosis being a (not so) perfect example.
Dozens of Turns on the Road to Correct MS Diagnosis
When your symptom is a cough, and your doctor also diagnoses tonsillitis and bronchitis, they won't prescribe just a cough syrup. They will primarily opt for an antibiotic because they can diagnose the cause of your cough. This applies to a vast number of diseases—current medical advancements allow doctors to accurately, usually via a straightforward path, go from "symptom" through "diagnosis" to the final destination: "treatment."
However, there are still diseases where this route is more complex. Lupus, Lyme disease, amyloidosis... and many others. Among them is multiple sclerosis, sometimes referred to as the disease with many faces for a reason. First, MS symptoms can vary among different patients, which makes it impossible to schematically determine their cause. Secondly, the symptoms are not exclusive to multiple sclerosis. This means that patients—especially in the early stages of the disease—may find themselves and their doctors (who are not always to blame) turning into many dead ends.
Not Quite Characteristic Symptoms of MS
To better illustrate the above problem, let’s take a closer look at several symptoms that are considered characteristic of multiple sclerosis. Let's also check how many different other diseases or disorders they can be equally characteristic of:
- Extreme fatigue—this hardly needs to be said, as fatigue occurs with many different health issues. It can be associated not only with multiple sclerosis but also with chronic stress, overstimulation, Hashimoto's, myocarditis, anemia, diabetes, breast or prostate cancer... and that's just the beginning.
- Numbness and tingling of limbs—a particularly characteristic symptom of MS, but... very often it also occurs with diabetes, sciatica of the hip and shoulder, spinal discopathies, arteriosclerosis, or "ordinary" (in their context) deficiency of vitamins or minerals such as B vitamins, magnesium, and calcium.
- Dizziness, balance disorders—may result not only from multiple sclerosis but also from vestibular neuritis, degenerative changes in the spinal cord or cerebellum, Parkinson's disease, myelopathy, neuropathy... and others.
- Nystagmus, vision disorders—also typical in vestibular neuritis, but also in Meniere's disease, tumor of the inner ear, diabetic retinopathy...
- Severe mood decline—followed by chronic stress, PTSD, depression, and many other psychological issues, but also anemia, thyroid function disorders, Alzheimer's and Parkinson's diseases, cancers, and even... after a flu.
Surely you see where this is going. Before a person actually diagnosed with multiple sclerosis gets their MS diagnosis, they may receive a series of other diagnoses. And so it goes for years, from doctor to doctor. The problem lies not only in how mentally and physically exhausting this process can be but also in implementing incorrect treatment.
Potentially Serious Consequences of Misdiagnosis in Multiple Sclerosis
I know of a case where a person almost underwent electroshock therapy on their way to their diagnosis. Almost, because it was blocked by a parent—the patient was then a teenager, so they did not decide the course of treatment. They were being treated solely for depression because other symptoms (including limb numbness) were deemed by the family doctor to be... simulated to get out of school.
Due to depression, the patient stayed in a psychiatric hospital, where they showed drug resistance—and so we come back to the proposal of electroshock therapy. Because the parent refused to perform it, the patient continued to undergo varied psychiatric pharmacotherapy (which was already ruled out). Only years later did the MS diagnosis appear.
And here are the questions: how could the enormous amount of different antidepressants have affected the teenager's body? How could electroshocks have affected a person with multiple sclerosis? A. Yahya and S. Khawaja from MRCPsych sought answers in their article "Electroconvulsive Therapy in Multiple Sclerosis: A Review of Current Evidence" (DOI: 10.4088/PCC.20r02717).
As we read in the conclusions: "The consensus is that ECT is an effective method of treating specific mental disorders in the course of multiple sclerosis, including catatonia. We successfully use ECT in our clinic for patients with multiple sclerosis. However, there are concerns about the potential impact of ECT on neurological and cognitive functions."
And this is just one of the thousands of stories of people walking the path to an MS diagnosis, increasingly exhausted with each dead end.
Is the Diagnosis of Multiple Sclerosis the Answer to Difficult Questions?
Medicine is a science that is constantly developing, so it will surprise us many times and allow us to discover something that seems unimaginable today. For example, multiple sclerosis was first described in 1868—what was before then? Therefore, it should not outrage us that there might be situations where medicine does not know the answer to such questions as "What is wrong with me?", "What is causing my condition?".
Doctors today can without much embarrassment admit that there is no cure for a given disease, no therapy, and that unfortunately, they are not able to help everyone. But do we often hear that it is not known what is responsible for such and such a condition of the patient? Unfortunately—definitely less often. And it's hard to blame them; after all, medicine is expected to provide answers.
Under such pressure, when no one can determine what is ailing the patient, "the disease with many faces," i.e., multiple sclerosis, often comes to "rescue" medicine. Unfortunately, often too easily and quickly (for the conditions of this diagnosis), whether due to erroneous assumptions, improperly performed tests, or too small a budget allocated for proper diagnostics of multiple sclerosis.
Differentiation in the Proper Diagnosis of Multiple Sclerosis
After such an initial diagnosis of MS, one gets referred to a neurologist, whom the patient often considers the last hope. However, it varies. Let's start with how the diagnosis of multiple sclerosis should look at this stage.
The basis is differentiation, i.e., the exclusion of other diseases with symptoms similar to those reported by the patient and typical for MS. You surely remember how characteristic for many diseases are the "classic" symptoms of multiple sclerosis—it would be useful to have Dr. House, right? He'll take a handful of Vicodin and sit down with his assistants to listen to their diagnostic proposals, they'll conduct a series of tests, House will insult them all, and in the end, he'll throw his diagnosis, of course, the correct one. All this, what they do (maybe apart from abusing opioids and insulting), is just differential diagnostics.
And what diseases have a clinical picture similar to multiple sclerosis and should first be excluded? These include:
- neuroborreliosis,
- acute disseminated encephalomyelitis,
- neurosarcoidosis,
- systemic lupus,
- Sjögren's syndrome,
- antiphospholipid syndrome.
In the differential diagnosis of multiple sclerosis (of course, apart from a detailed medical interview), numerous tests should also appear, such as:
- complete blood count,
- liver tests,
- evaluation of vitamin B12 levels,
- TSH measurement,
- testing of FT3 and FT4,
- serological syphilis reactions
and finally: magnetic resonance imaging and cerebrospinal fluid examination. After this whole process, the disease may be classified as autoimmune. One still has the same symptoms, but now confirmed by the results of magnetic resonance imaging.
Demyelination—The Cause of All Symptoms of Multiple Sclerosis?
The mentioned resonance detects demyelinating changes in people with multiple sclerosis, which are a sort of stamp under the diagnosis. The doctor suspects MS, orders a resonance, finds changes: and there we have multiple sclerosis. To put it very simply, of course.
But does medicine still look for the exact causes of demyelination at this stage? Sure—the doctor, performing standard tests, excludes schematic diseases, such as Lyme disease or neurological syphilis. Unfortunately, the effectiveness of the applied tests is still very low, but the accepted diagnostic patterns for various reasons consider the results sufficient to make a diagnosis of multiple sclerosis.
So, the diagnostician holds another piece of evidence for the previously made MS diagnosis in his hand, a stamp. It is increasingly certain that it can be nothing else but an autoimmune disease. Multiple sclerosis, for the time being, saves the face of medicine.
It is worth considering what is increasingly being said: that the application of immunosuppressive therapy brings a lamentable effect. And since this is the case, perhaps the cause does not always lie in auto-aggression but in something else? Maybe it's worth taking a step back and humbly admitting that medicine is also still full of question marks?
Demyelination Does Not Necessarily Mean an MS Diagnosis
Doctors have imperfect diagnostic methods, low budgets, and a health care system far from ideal, and a lot of pressure to make any diagnosis at all costs. No wonder then that more and more people are being misdiagnosed. The sentence of multiple sclerosis is often heard by people in whom another cause of demyelination is later magically found: neuroborreliosis, neurological syphilis, or alcohol-related disease.
Considering the risk of condemning patients to treatment that may have terrible consequences, wouldn't it be better to admit that further diagnostics need to be deepened and continue searching?
Appropriate Diagnosis of Multiple Sclerosis Key to Success
Isn't it also the case that sometimes we would rather just hear "multiple sclerosis" than be stuck in a vicious circle and simply expect an answer regardless of whether it will be the right one? Because we are tired of painful tests, huge needles in the loins, nausea after contrast, "doctor hopping", fear of the unknown, and waiting several months (in good winds) for more unpleasant tests and talks?
I know very well that this is how it is. That at some stage one no longer has the strength for further stress, looking into the eyes of terrified family members and close people, for crying and physical pain. But I also know that it is worth making the effort for one's certainty and doing everything in our power to make sure that we have checked everything. Just because the diagnostics of multiple sclerosis and dozens of other diseases are limping, and doctors in such and not another system, acting according to procedures, must at some stage issue a diagnosis. Because when the diagnosis of MS is wrong, that winding road starts anew.
Correct Medical Diagnosis of MS—Medicine Has No Closed Chapters
As I mentioned, medicine is a science that is constantly developing and will never be fully closed. Therefore, with each diagnosis, make sure that this fact was not overlooked.
It is always very important to find the right doctor. A real doctor, from whose lips you will not hear at the best possible opportunity, casually thrown—diagnosis of MS. One who says that before the final diagnosis, a few additional tests should be performed. One who admits that something very important may have been overlooked in the diagnostic process, something that may have a key impact on the chosen path of treatment, on our fitness, on our lives.
Look for your own Dr. House, preferably less grumpy but just as dedicated to solving the mystery.
Author: Andy - CEO of Biomelius LTD, who was diagnosed with MS in 2017
