Caregivers Must Ask the Right Questions

The fundamental role of caregivers to those with multiple sclerosis is to provide physical and emotional support to our loved ones who battle the effects of the debilitating disease every day. But there are secondary roles that caregivers can and should render to our loved ones and friends. One key role is to raise questions that challenge existing norms of treatment.

Both confidence and skepticism are needed

For many MS patients, the array of FDA-approved medications has provided helpful options to suppress the cells that attack the myelin sheath that cover nerves and cause physical and mental debilitation. For others, the disease seems resistant to the best available science. But is the medical profession doing all it can? We need to have both confidence and skepticism in how medicine has approached MS.

An acquaintance of many years was badly stricken with progressive MS about 20 years ago when steroids were the only approved therapy. Of course, steroid treatment usually is a short-term fix. A far-sighted neurologist went outside the box and treated him with intensive chemotherapy and he has been ambulatory and fully-functioning ever since – without further treatment. He still suffers from fatigue and can work part-time only, but his life would have been radically different without chemotherapy.

An issue that shocked me

A colleague of mine who is a professor at a New Jersey state university has been fighting progressive MS for many years. As an avid runner, MS hit his lifestyle very hard and he has sought out alternative therapies for many years. One of them is stem cell therapy in which adult stem cells are used to restore lost neurons and repair damaged myelin. Although not approved by the FDA, my colleague underwent this therapy a few years ago.  His condition improved dramatically.

More recently, he completed a clinical trial abroad for a pharmaceutical company. The trial therapy went well, so I expected him to praise the future of stem cell therapy. While my colleague agreed that stem cell therapy can be effective, he said the real engine of his improvement was chemotherapy. He also raised an issue that shocked me, saying, “Neurologists should not be treating MS. Hematologists and immunologists are immune system experts. MS should be treated by these doctors. Neurologists are not immune system experts; they are very good with nerves and the related. They should only be used as adjuncts for MS.”

Questions we must ask

This is the type of question that MS patients and caregivers must ask. We also must ask whether chemotherapy, with its risks, might be a sound choice for some over MS therapies that are heavily promoted by the pharmaceutical industry. Is it possible that the pharmaceutical industry and the medical profession have been promoting costly prescription medications over chemotherapy in their own self-interest?

I am personally aware of a situation where they have done just that. As a seasonal allergy sufferer, I used every type of pill and nasal spray available for many years to try to obtain some relief. My allergies once got so bad that I required intravenous steroid treatment so I could stay awake and function normally. Then I was introduced to an ear, nose and throat specialist who used a better treatment. He injected cortisone into my turbinates (the part of your nose that becomes inflamed to block allergens). My symptoms lessened to the point where I needed virtually no allergy medications. The therapy is good for four months and then is repeated.

Pharmaceutical companies never promoted it

This physician, who worked at one of the top hospitals in New York, explained that the procedure was proven safe in clinical trials but never caught on in the medical field. That was because pharmaceutical companies never promoted it. They were too invested in antihistamines, sprays and other costly products. (According to marketresearchfuture.com, the global market for antihistamines is expected to reach $280 million by 2023.)

So as caregivers to patients who are humanely entitled to the best MS treatment possible, we must trust medical science, but we must also ask questions to verify that the right specialists are treating MS and that they are recommending the best available therapies.