There is a general expectation that someday there will be a "cure" for MS, and that's the wrong way to look at it.

Just the Tip

In reality, multiple sclerosis is a neurological manifestation of underlying biological issues that may vary from person to person, such as infections, dysbiosis, or food sensitivities.

Therefore, there can be no singular "cure."

Unfortunately, the mainstream MS treatment seems to revolve around treating the neurological symptoms of MS, not on diagnosing and treating the underlying issues that led to the development of MS.

A Diagnosis By Exclusion

Because of the focus on neurological symptoms, diagnosis of MS becomes more complicated.

Many other medical conditions are associated with many of the neurological symptoms seen in MS. Many other medical conditions give rise to many of the same biological markers as are seen in MS.

And due to the non-specific biomarkers of MS, multiple sclerosis is considered a "diagnosis by exclusion". In other words, it's what doctors call your condition when they've ruled out everything else they can think of.

Unfortunately, this process is clearly flawed. A joint study by UCLA and Cedars-Sinai found that, among the patients referred to their MS clinics over the course of a year, nearly 1 in 5 had been misdiagnosed. As a result of the misdiagnosis, 72% of the misdiagnosed patients had received MS treatments. The researchers calculated that "the cost of treating a misdiagnosed case can range from $50,000 to $80,000 per year for a patient."

Taking The Batteries Out Of A Smoke Detector

Mainstream medical practitioners and treatments seem to operate under the reasoning that, regardless of what led you to develop multiple sclerosis, the basic mechanical outcome is the same; immune cells attack the nerves, leading to nerve damage.

Mainstream MS treatments are focused on that mechanical outcome because that is the lowest common denominator amongst all MS patients.

Virtually all of the mainstream MS treatments are meant to suppress the immune system so that the damage is simply reduced, as opposed to trying to stop the conditions that lead to the damaging immune activity in the first place.

It's like continually painting over mold as opposed to addressing the water leak.

Or, as Dr. Mark Hyman puts it, "it's like taking the batteries out of a smoke detector instead of trying to find the fire."

Direct Proof May Never Come

For ethical and logistical reasons, it may never be possible to directly "prove" that a particular model of the pathogenesis of MS is correct in a subset of MSers.

For example, scientists have long speculated that infections may be at the root of many MS cases.

Ask yourself what would be necessary in order to "prove" such a hypothesis.

You could run a double-blind test wherein you infect the test group with a pathogen. Of course, in order to control for as many factors as possible, you would have to very tightly monitor or control external factors that might invalidate the test.

Because it's believed that the disease develops slowly over time, you would would be looking at a study that spans decades. And the longer the study runs, the greater the chance that external factors may impact the validity of your results. Thus you would need a much larger sample size.

You can't run an experiment like this for obvious reasons.

The next best thing is to conduct observational studies (i.e., draw conclusions from information that's available) and to test your hypotheses in lab (e.g., through in vitro tests of human cells and through animal models).

Pharmaceutical Companies Are Not Incentivized to "Cure" MS

Lowest Common Denominator

Drug trials are incredibly expensive, and pharmaceutical companies make decisions driven by profit. It's not that we couldn't develop an effective treatment for incredibly rare medical conditions; it's that there's not enough of a financial incentive to do it, due to the rarity of those conditions.

From an investment standpoint, it makes much more sense to develop drugs they can push onto as many patients as possible. Pharmaceutical companies are naturally less inclined to develop a highly effective treatment for a very small group of patients.

Take glatiramer acetate (Copaxone) as an example. Cochrane (an international and independent group of researchers) reports that GA is barely effective at reducing relapses and does not prevent or slow the progression of MS.

It has been a big money-maker, though, and is one of the first-line treatment options for RRMS.

Extortion

The pharmaceutical industry benefits from the misguided perception that "there is no cure for MS" because it sets up the expectation that patients are in it for the long haul.

The message from the pharmaceutical and healthcare industries is loud and clear: there is no cure and taking these drugs is your only real option.

As a result, desperate patients are bound to what amounts to a lifelong subscription service for increasingly expensive treatments that ultimately do not cure the disease.

The pharmaceutical industry exploits this desperation and effectively extorts patients. MS drugs have seen a sevenfold increase in cost over the past decade, according to Drugs.com.

At the time it was introduced, Gilenya carried a hefty price tag of $4,000/mo. Based on today's figures, Gilenya now costs over $8,500/mo (a staggering $102,965/year), far outpacing inflation.

The cost of multiple sclerosis medications have skyrocketed | Sort Out This MS
Relentless climb of the annual costs of DMT drugs for MS: chart by Managed Care

Simply put, pharmaceutical companies are not incentivized to "cure" or properly treat MS patients. For them, MS is a cash cow.

No One Is Treating You

In the context of MS treatment, physicians are trained to treat symptoms, not diagnose and address underlying problems.

Physicians abdicate their responsibility to their patients and essentially pass the buck to pharmaceutical companies, regarding the drugs as "the treatment."

MS treatment seems to amount to little more than executing a call script wherein all roads lead to a handful of FDA-approved medications: try Treatment A, but switch to Treatment B if Treatment A makes things worse. Check to make sure the patient doesn't end up with a life-threatening viral infection due to the treatment. If the patient wants to become pregnant, taper off Treatment B and administer Treatment C to flush the body of Treatment B.

Perhaps the most pernicious aspect is that this system may actually hurt patients in the long run by misleading them into believing they are already doing all they can to manage their health.

Worth The Risk?

As your neurologist will readily admit, the standard FDA-approved treatments carry with them substantial risk.

Lemtrada can been shown to result in a secondary autoimmunity condition: vitiligo, the condition in which a person's skin gradually loses its pigmentation.

Vitiligo | Sort Out This MS
Vitiligo. Photo by James Heilman, MD [CC BY-SA 3.0]

Worse, due to the to the unspecific targeting of blanket immunosuppression, patients who follow any of the mainstream MS therapies become susceptible to a opportunistic virus called JCV (John Cunningham Virus), which can cause a deadly brain infection called PML (progressive multifocal leukoencephalopathy).

Considering that many MSers develop their disease in their 20s, I would argue that the chance of suffering from complications from a mainstream MS treatment at some point down the line outweighs the potential benefit to MSers with mild cases.

The Institute for Clinical and Economic Review came to a similar conclusion in 2017, reporting that most disease-modifying therapies for MS have become overpriced in relation to their benefit to patients.

Proper MS Treatment

Multiple sclerosis is a multifactorial disease with varying causes and it develops over time.

Logically, any proper treatment would be multimodal (i.e., would address various causative and consequential factors) and would take time.

In my eyes, a proper treatment consists of these things:

  • Stem acute immune activity if the condition is severe (mainstream MS drugs [including corticosteroids and immunosuppressants] are likely the best option for this)
  • Remove potential triggers (e.g., dietary triggers, emotional triggers)
  • Identify and correct nutritive deficiencies (e.g., Vitamin D deficiency)
  • Attempt to diagnose and treat underlying issues, whether those issues are causative factors or consequential factors (e.g., gut dysbiosis, infection)
  • Identify and diagnose metabolic abnormalities (e.g., elevated homocysteine, elevated lactate)
  • Reduce the immune system signaling and chemical imbalances that lead to deleterious (damaging) immune activity and disease progression
  • Promote healing (e.g., myelin, nerves, intestinal barrier, blood-brain barrier)

It's no surprise that the individuals who claim to have "reversed" their MS all took these steps directly or indirectly.

Conclusion

Do your research and try to get an understanding of how MS works and how the medications fit into it.

Be your own advocate. Expect that your physicians will not see the value in additional testing to narrow down the problem and will instead pressure you to take pharmaceuticals.

Medication is not for everyone. It could be that you're better off on one of the MS medications; I can't speak to that--and really, no one can predict how you'll fare.

Just know that if you do take one of the MS medications, it's not a complete treatment in and of itself. There's plenty more you can do, and you may find that if you make those other changes, you may be able to wean yourself from the medications.

Obligatory disclaimer: This content is meant to be informational. As everyone's body is different, what works for others may not work for you. I am not a doctor and you're probably not either. You should consult with your doctor before trying anything. Don't sue me.
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