Be Wary of Multiple Sclerosis "Cures"
Stephen Barrett, M.D.
Multiple sclerosis (MS) is a degenerative disease in which patches of inflammation and scarring interfere with the function of the brain, spinal cord, and/or the nerves to the eyes. The cause of MS is unknown, but the most attractive theory is that it is an immune reaction to the nervous system. Its symptoms include muscular weakness, loss of coordination, and difficulty with speech and vision. It occurs chiefly in young adults and, like arthritis, can have a very variable course. Some people have only a single attack. Others have only a few attacks in a lifetime, recover from these, and experience no disability except during attacks. Others have frequent attacks from which they don't recover completely, but which cause only partial disability. Still others have a slow progression of disability over a period of 10 to 25 years, which eventually leaves them helpless. When attacks occur, symptoms may come and go suddenly and may even vary from hour to hour.
MS's extreme variability makes it a perfect disease for quacks. The only way to know whether a treatment is effective is to follow many patients for years to see whether those who receive the treatment do better than those who do not. Quacks don't bother with this kind of testing, however. They simply claim credit whenever anyone who consults them improves. And since the majority of attacks are followed by complete or partial recovery, persuasive quacks can acquire patients who swear by whatever they recommend.
The Therapeutic Claims Committee of the International Federation of Multiple Sclerosis Societies analyzed more than a hundred alleged treatments and published the results in a book called Therapeutic Claims in Multiple Sclerosis, which underwent four editions between and 1982 and 1996. The book was updated and published again in 2001 and 2006 as Multiple Sclerosis: The Guide to Treatment and Management. Each analysis included a description of the method, the proponents' rationale, a scientific evaluation, estimate of risks and/or costs, and the authors' conclusion. The methods were then classified according to plausibility, extent of study, risk, and cost.
No cure is known, but a few methods are useful in shortening the duration of attacks, reducing their severity, or helping to deal with the symptoms. Methods that have a plausible rational but have not been sufficiently tested are considered "investigational." I am not listing the useful or investigational methods because I believe that advice about them should be obtained from a qualified neurologist who can thoroughly discuss them. Reliable information is also available from the National Multiple Sclerosis Society.
The committee noted that no nutritional deficiency is known to be a factor in MS, and that no special diet or the addition of vitamins or minerals has been proven to alter its course. Polyunsaturated fatty acids (PUFA) have slight immunosuppressive properties, but studies involving sunflower seed oil, evening primrose oil, safflower seed oil, and fish oils, have produced conflicting results. The committee concluded that other than a possible benefit of PUFA-containing oils, there is no evidence that any dietary change affects MS.
Methods to Avoid
The methods considered implausible or ineffective are listed below. I believe these methods should be avoided:
Adequately tested but ineffective in influencing the course of MS
Aspirin and sodium salicylate; colchicine (for immune modulation); thymectomy (removal of the thymus gland); transfer factor; myelin basic protein; hyperbaric oxygen (HBO).
Implausible and untested or inadequately tested
Various nonsteroidal antiinflammatory drugs (NSAIDs); thyrotropin-releasing hormone; cannabis (marijuana); Diltiazam; Nifedipine; Verapamil; intravenous yeasts (Proper-myl); pancreatic extract (epropanex); honey bee venom (safety is uncertain); octacosanol; superoxide dismutase (SOD); procaine hydrochloride; dimethyl sulfoxide (DMSO); Alphasal (formerly Chlororazone or Vitamin X); allergens; Rodilemid; alpha-fetoprotein; bee venom; Proneut; immunobiological revitalization; proteolytic enzymes; injections of calcium orotate or calcium aminoethyl phosphate; oral calcium + magnesium +vitamin D; sodium bicarbonate or phosphate; hyperimmune colostrum ("immune milk"); neural therapy; Nystatin; transcutaneous nerve stimulation (TNS); ultrasound treatment applied near the spinal column; magnet therapy; dental approaches such as correction of bad bite, TMJ treatments, or removal of mercury-amalgam fillings; hysterectomy; spinal manipulation; low-fat diet; allergen-free diet; Kousmine diet; gluten-free diet; raw food diet (Evers diet); MacDougal diet; pectin- and fructose-restricted diet; sucrose- and tobacco-free diet; vitamin regimens; mineral supplements; cerebrosides; aloe vera juice; and various enzymes (Wobenzym, digestive enzymes, Vitafestal, Bilicomb, Panpur, Panzynorm).
Implausible and known to have significant risk or side effects
ACTH or other corticosteroids administered into the spinal canal; chloroquine; x-ray treatment; immunosuppression with chlorambusil (Leukoran), Lumustine, or 5-Fluorouracil; immune modulation with thymus hormones (Thymosin, Thymuline/Facteur Thymique Scrique, Thymopoetin 5, TFX-Polfa, THX, T-Activin); myelin basic protein; Interferon gamma; interferon inducers (Tilorone, Poly-ICLC, Staphage Lysate); Progabide (for spasticity); heart and pancreas extract (Pancorphen); snake venom (PROven, Venagen, Horvi MS9); cellular therapy; autogenous vaccines; chelation therapy; "metabolic therapy"; promazine hydrochloride (Sparine); Le Gac Therapy (antibiotics plus hot tubs); acupuncture; electrical stimulation of the dorsal column of the spinal cord; hyperbaric oxygen (HBO); sympathectomy; ganglionectomy; surgical spinal cord relaxation (cervicolordodesis); vertebral artery surgery; surgical implantation of pig brain tissue; Cambridge or other very-low-calorie liquid diets; high-dosage or vitamin C, and various other high-dosage vitamin or mineral regimens.
In the 1980s, Irving Dardik, M.D., a vascular surgeon, devised an exercise program which he claimed would to optimize the body's health patterns and lead to reversal of such disorders as multiple sclerosis. In 1995, New York State medical licensing authorities found him guilty of fraud, exercising undue influence, guaranteeing satisfaction or a cure, and failing to maintain adequate records. Case records indicate that he had charged four MS patients from $30,000 to $100,000 for their treatment. His New York medical license was revoked, he was fined $40,000, and his New Jersey license was subsequently revoked. One of the victimized patients, former TV investigative reporter Ellen Burstein MacFarlane, coauthored a book about her experience .
"Amalgam Toxicity" Scam
A few hundred physicians and dentists have been falsely claiming that "mercury toxicity" from amalgam fillings cause multiple sclerosis and that removing them may cure it. This claim is false and fraudulent. The mercury is amalgam is tightly bound so that the amount that gets into the body over time is insignificant. Moreover, no scientific study has demonstrated that removing amalgam fillings helps patients with multiple sclerosis or any other ailment. I believe that practitioners who recommend amalgam replacement as a treatment for multiple sclerosis have extremely poor judgment and should be delicensed .
Calcium ethylamino-phosphate (calcium EAP) has been promoted as a therapy or cure for MS and many other diseases. These claims are based on anecdotal reports rather than controlled clinical trials. The National Multiple Sclerosis Society has concluded that there is no objective evidence calcium EAP is effective against MS and "because the treatment protocol includes many different agents and may include a powerful drug that suppresses the immune system, the proposed therapy is not without serious risk."  The major proponent, a German physician named Hans Nieper, died in 1998, but the substance is still marketed here and abroad.
"Coral calcium" is a dietary supplement said to be derived from "remnants of living coral that have fallen from coral reefs, as a result of wave action or other natural processes." Since coral reefs are protected by law, "coral calcium" is made by grinding up limestone that no longer contains live organisms. Their principal promoter, Robert Barefoot, has claimed in widely aired infomercials that he has witnessed people with multiple sclerosis "get out of wheelchairs just by getting on the coral." He doesn't say how he determined that patients with multiple sclerosis were actually helped by coral calcium. There is neither scientific evidence nor any logical reason to believe that they were . The FTC charged Barefoot with false advertising and obtained an injunction against further advertising claims of this type.
Practitioners who advocate this type of therapy argue that diseases develop in people whose bodies lack sufficient oxygen. They claim that hydrogen peroxide is an effective treatment because it increases the cellular oxygen levels, thereby correcting the alleged deficiency. "Oxidative therapy" has also been promoted for the treatment of cancer, asthma, emphysema, AIDS, arthritis, heart disease, and Alzheimer's disease. There is no scientific evidence that lack of cellular oxygen occurs as described by "oxidative therapy" proponents, that swallowing or injecting oxygen-rich substances actually effects cellular oxygen levels, or has any effect on the diseases it is used to treat. The National Multiple Sclerosis Society  and the American Cancer Society  have both warned that hydrogen peroxide therapy has not been proven safe or effective. The National Multiple Sclerosis Society was made in response to the death of a woman who had received hydrogen peroxide therapy .
Hyperbaric oxygen therapy (HBOT) involves breathing pure oxygen in a specially designed chamber. It is appropriate for deep sea divers who suffer pressure problems (the "bends") after resurfacing). Some clinicians, particularly in the United Kingdom, speculate that some of the nerve damage in MS is caused by lack of oxygen. The most positive reports have not been based on controlled studies, so their data cannot be interpreted. In 2004, after an extensive literature search and analysis, the Cochrane Collaboration published a comprehensive review of the controlled studies—two positive and seven negative. The reviewers concluded:
We found no consistent evidence to confirm a beneficial effect of hyperbaric oxygen therapy for the treatment of multiple sclerosis and do not believe routine use is justified. The small number of analyses suggestive of benefit are isolated, difficult to ascribe with biological plausibility and would need to be confirmed in future well-designed trials. Such trials are not, in our view, justified by this review .
Prokarin (also called Procarin) is a skin cream that is administered using a patch that enables its ingredients to be absorbed. The treatment is based on a hypothesis that involves histamine and dates back to the 1940s. The primary promoter is Elaine DeLack, a nurse who "discovered" and patented a mixture of histamine and caffeine. Compounding pharmacists prepare the product, which is inexpensive to manufacture but is sold for about $250 for a month's supply.
In February 2002, the journal Multiple Sclerosis published the results of a 12-week study of MS patients in which 21 people took Prokarin, 5 took a placebo, and all participants were asked to limit their intake of caffeinated beverages to one cup of regular coffee per day. The authors concluded that Prokarin produced a "modest" lessening of fatigue . The National Multiple Sclerosis Society advised that the study was difficult to interpret because the number of participants was small; the numbers in the Prokarin and placebo groups were very different; the fact that Prokarin contains caffeine might mix up the results; and other reasons . The Society also warned that Prokarin lacks a scientifically plausible rationale and has not been proven to modify the course of the disease  and that while Prokarin does not apppear to be harmful, the level of benefit does ot justiy its very high cost .
Prokarin proponents are promoting this study as showing that Prokarin "works." But even if it can lessen fatigue, there is no reason to believe it can influence the course of the disease, which is why most people take it. In my opinion, it is a poor investment and any marketing that arouses hope that it will influence the course of MS is both unethical and may be illegal. If you encounter a pharmacist selling Prokarin, ask the state pharmacy board to investigate what claims are being made.
The FDA has warned that "liberation therapy" (also called liberation procdure) is unproven and unsafe. The procedure, in which balloon angioplasty devices or stents are used to widen narrowed veins in the chest and neck, is based on the unproven idea that a narrowing of veins in the neck and chest (chronic cerebrospinal venous insufficiency) may cause MS or contribute its progression by impairing blood drainage from the brain and upper spinal cord. However, studies exploring a link between MS and CCSVI are inconclusive, and the criteria used to diagnose CCSVI have not been adequately established. The FDA warning was generated by reports of death, stroke, detachment and migration of the stents, damage to the treated vein, blood clots, cranial nerve damage and abdominal bleeding associated with the "liberation" procedure . In 2017, Canadian researchers reported on two studies that should end the use of liberation therapy. In one, British Columbia residents who self-reported having had venoplasty were interviewed and followed for up to 24 months post-therapy using standardized structured questionnaires. At first, more than 40% of participants thought that the venoplasty had had positive effects on their health conditions, such as fatigue, numbness, balance, concentration/memory and mobility. However, this improvement was not maintained over time. In addition, 11.5% reported procedure-related complications and 17.3% reported complications within the first month after the procedure . The other study was a controlled experiment in which 104 participants had a catheter inserted into their blocked veins, but only 49 had their vessel walls pushed out by inflating a small balloon. A year later brain imaging, standard assessments of MS symptoms, and the patients' own self-assessments were the same in both groups .
Aetna has issued a clinical policy bulletin that lists covered and not-covered MS treatments. The non-covered methods include alpha-interferon; anti-T-cell monoclonal antibodies other than natalizumab (Tysabri, Antegren); anti-lymphocyte globulin; APOE genotyping; balloon angioplasty/venous angioplasty with or without stent placement; brainstem auditory evoked response for diagnosing MS; cerebrospinal fluid levels of neurofilament as a biomarker of MS; cooling garment; Cosyntropin (Cortrosyn); Cyclosporine (Sandimmune); Daclizumab (Zenapax); dietary interventions (e.g., gluten-free diets, low fat diets, linoleate supplementation to diet, and dietary regimens with polyunsaturated fatty acids); electronystagmography (in the absence of vertigo or balance disorder); certain erythropoesis stimulating agents; ferritin/iron status (blood or CSF) for the diagnosis of MS; Gamma-interferon; gMS DX and gMS Pro EDSS tests for the diagnosis of MS; hyperbaric oxygen; IL-2-toxin; interleukin-1 gene polymorphisms testing; IVIG for progressive MS; Methotrexate; MTHFR testing for MS; myxovirus resistance protein A (MxA) as a biomarker for MS relapse/treatment response; Naltrexone; Ocrelizumab; Ofatumumab; optical coherence tomography for screening of member receiving fingolimod (Gilenya) for macular edema; oral myelin (Myloral); otoacoustic emissions (in the absence of signs of hearing loss); photopheresis; plasmapheresis for chronic or secondary progressive MS (maintenance therapy); Procarin (transdermal histamine); prolactin; pulsed magnetic field therapy; PUVA (psoralen ultraviolet light); retinal nerve scanning for screening/monitoring persons on fingolimod (Gilenya); Ribavirin; Rituximab for the treatment of RRMS; sildenafil; statins; stem cell transplantation; T-cell receptor therapy; T-cell vaccination; total lymphoid irradiation; transcranial brain sonography for predicting disease progression in MS; transforming growth factor (TGF)-beta; tumor necrosis factor antagonists; and tympanometry (in the absence of hearing loss) . Aetna's list also includes other methods that are undergoing clinical trials and may have some therapeutic potential. The National Multiple Sclerosis Society Web site provides news and guidance about clinical trials.
- Bee Venom Therapy
- MS Is Not Caused by Hepatitis B Vaccine
- MS Questionable Treatments and Claims
- Aetna Clinical Policy Bulletin
- Be Wary of Theratec Therapy
- Dubious Claims for the Molecular Magnetic Energizer
- FDA warning letter to velvet deer antler product marketer
- National Multiple Sclerosis Society Multiple Sclerosis Information Sourcebook
- "MS Cures" (how people form mistaken beliefs)
- MacFarlane EB, Burstein P. Legwork: An Inspiring Journey Through a Chronic Illness. New York: MacMillin, 2000.
- Barrett S. The mercury toxicity scam: How anti-amalgamists swindle people. Quackwatch, revised Oct 16, 2002.
- Calcium EAP. In Multiple Sclerosis Information Sourceboo, National Multiple Sclerosis Society, 2006.
- Barrett S. Be wary of coral calcium and Robert Barefoot. Quackwatch, revised Jan 25, 2004.
- Important medical alert: Hydrogen peroxide. National Multiple Sclerosis Society Web site, Sept 2004.
- American Cancer Society. Questionable methods of cancer management: Hydrogen peroxide and other "hyperoxygenation" therapies. CA—A Cancer Journal for Clinicians 43:47-55, 1993.
- Suit alleges death from IV hydrogen peroxide. Quackwatch, revised Oct 7, 2004.
- Bennett M, Heard R. Hyperbaric oxygen therapy for multiple sclerosis. Cochrane Database of Systematic Reviews DOI: 10.1002/14651858.CD003057.pub2, 2012.
- Gillson G and others. A double-blind pilot study of the effect of Prokarin on fatigue in multiple sclerosis. Multiple Sclerosis 8:30-35, 2002.
- NMSS Research Programs Department. Results of Prokarin to treat MS fatigue. National Multiple Sclerosis Society Research/Clinical Update, Jan 30, 2002.
- NMSS National Clinical Adviisory Board. Management of MS-related fatigue. National Multiple Sclerosis Society Expert Opinion Paper, 2006.
- FDA issues alert on potential dangers of unproven treatment for multiple sclerosis. FDA news release, May 10, 2012.
- Sadovnick AD and others. Patient-reported benefits of extracranial venous therapy: British Columbia CCSVI Registry. Can Journal of Neurological Sciences, March 2017.
- Controversial "liberation therapy" fails to treat multiple sclerosis: study. University of British Columbi news release, March 7, 2017.
- Aetna Clinical Policy Bulletin 0264: Multiple sclerosis treatments, May 24, 2016.
This article was revised on March 9, 2017.