VOLUME 10, NUMBER 1 FEBRUARY 2006

exchangeMS

THE OFFICIAL NEWSLETTER OFTHE CONSORTIUM OF

MULTIPLE SCLEROSIS CENTERS

MS E X C H A N G E I S T H EO F F I C I A L N E W S L E T T E R O F T H EI N T E R N AT I O N A L O R G A N I Z AT I O N

O F M U LT I P L E S C L E R O S I S N U R S E S .

Once largely ignored, if not out-right dismissed by most healthcare providers, complementary

and alternative medicine (CAM) hasbecome more popular now than ever.Patient use of herbal and other CAMremedies has risen significantly in re-cent years1 and those with multiplesclerosis (MS) are no exception.

POPULAR AMONG MS PATIENTS“Studies have routinely found that themajority of people with MS have triedsome form of alternative therapy,”noted Allen Bowling, MD, PhD, MedicalDirector of the Rocky Mountain Multiple Sclerosis Center in Engle-wood, Colorado and Clinical AssociateProfessor of Neurology at the Univer-sity of Colorado Health Sciences Cen-ter. Of the 3,140 respondents to a 2003survey of MS patients, 57% reportedusing one or more CAM therapies.2

CAM use by MS patients was quitecommon during the 1970s, becauseclinicians had little to offer these indi-viduals other than symptomatic man-agement, noted June Halper, MSCN,

ANP, FAAN, Executive Director of theBernard W. Gimbel MS Comprehen-

sive Care Center in Teaneck, NJ. “Someof our patients would spend fortuneson totally unproven therapies such ascobra venom or elemental calcium,”she recalled. Today, the limitations ofcertain disease-modifying therapies—and the increased acceptance of CAMby health care professionals—have ensured that alternative therapies re-main on the radar screen for most patients.

HELPING PATIENTS MAKEINFORMED DECISIONS

“There are very few alternative thera-pies for which definitive evidence ofefficacy exists,” Dr. Bowling admitted.Therefore, health care providers may feel that discussing alternativemedicine is a waste of the patient’stime. However, even MS clinicianswho are skeptical about the efficacy ofCAM may find a working knowledgeof alternative therapies valuable. “Wedo know about many alternative ther-apies that could possibly be helpful—or harmful—and we can improvequality of care by sharing this infor-mation with our patients,” said Dr.Bowling.

COMPLEMENTARY ANDALTERNATIVE MEDICINE IN MSSEPARATING THE HELP FROM THE HYPE

Global Suppor ters ofMS Exchange inc lude:

INSIDE:• Cerebellar Ataxia 4

• IOMSN AnnouncesAPN Initiative 5

• Visual Dysfunction in MS 6

• “From My Perspective . . .”by June Halper 10

DIRECTORSColleen Harris, RN, MN, MSCN

University of Calgary MS ClinicCalgary, Alberta, Canada

Linda Morgante, RN, MSN, CRRN, MSCN

Advanced Practice NurseCorinne Goldsmith Dickinson Center for MSMount Sinai School of MedicineNew York, New York, USA

ADVISERSJames Bowen, MD

Assistant Professor of NeurologyUniversity of Washington Medical CenterSeattle, Washington, USA

Darcy Cox, PsyD

Neuropsychologist, Assistant ProfessorUniversity of California, San Francisco Multiple Sclerosis CenterSan Francisco, California, USA

EDITORIAL DIRECTOR, PROJECTSKatherine Wandersee

MANAGING EDITORAmy Wszolek

SENIOR EDITORAdriene Marshall

ASSOCIATE EDITORKrista Binetti

CE PROJECT COORDINATOR Kelly A. Eckert

EDIT

ORIA

L BO

ARD

PUBL

ISH

ING

STA

FF DESIGN DIRECTORSharyl Sand Carow

ASSOCIATE ART DIRECTORJennisabel Singer

PRODUCTION DIRECTORJohn A. Caggiano

PRODUCTION COORDINATORAllison Gabriele

PUBLISHING CONSULTANTJoseph J. D’Onofrio

Gail Hartley, RN, MSN, NP

Neurology ConsultantsArcadia, California, USA

Jutta Hinrichs, BScOT, MSCS

Occupational TherapistFoothills Medical CentreCalgary, Alberta, Canada

Pat Provance, PT

Senior Physical Therapist Kernan Rehabilitation Hospital &Maryland Center for MSBaltimore, Maryland, USA

Carol Saunders, RN, BSN

Neurology Center of FairfaxFairfax, Virginia, USA

Pauline Weldon, RN

Consultant for MS EducationBridgewater, Nova Scotia, Canada

FOUNDING EDITORSJune Halper, MSCN, ANP, FAANExecutive DirectorBernard W. Gimbel MS CenterTeaneck, New Jersey, USA

Nancy J. Holland, RN, EdDVice PresidentClinical Programs DepartmentNational Multiple Sclerosis SocietyNew York, New York, USA

2 MS Exchange February 2006

DISCUSSING CAMWITH PATIENTS

Some patients don’t tell their clini-cians that they’re using CAM be-cause they fear disapproval, Ms.Halper said. In turn, health careproviders often don’t raise the issue.“It’s the job of the clinician to initiatea frank, open discussion of CAM,”she stated.

Medical professionals need notprovide or even endorse alternativetherapies themselves. Indeed, giventhe liability and licensing issues as-sociated with recommending thera-pies for which efficacy and safetydata are lacking, the best approachfor most clinicians may be to simplyprovide information and resources,according to Dr. Bowling.

SAFETY CONCERNSUnfortunately, some patients assumethat “natural” CAM therapies arecompletely safe. “Patients typicallyare not well-informed about the sideeffects and drug interactions thatmay occur with some vitamins andherbal supplements,” said Pam New-land, RN, MSN, PhD, a Lecturer atSouthern Illinois University School ofNursing in Edwardsville.

For example, some CAM thera-pies have immune-stimulating prop-erties that could, in theory, provokeor worsen the symptoms of auto-immune diseases such as MS, addedDr. Bowling (Table).3

Other alternative therapies canhave adverse effects not unlike thoseof conventional medications. For in-stance, ginkgo can increase the riskof bleeding and thus should beavoided by people who are using anticoagulants or have bleeding dis-orders. To cite a more extreme exam-ple, kava kava, used to treat mildanxiety, has been linked to fatal livertoxicity and has been banned in Canada and some European countries.

“Thus, it is important that clini-cians educate their patients on anyside effects or interactions that mayoccur,” stressed Dr. Newland.

CAM AND THE MSTREATMENT PLAN

In formulating a treatment plan, Dr.Bowling advised focusing first onconventional pharmacologic thera-pies as well as accepted adjunctiveapproaches, such as physical therapy.“However, if patients ask whether

there is anything else they can do, in-formation about various interven-tions can be provided.” Cliniciansshould be sure to stress that evi-dence-based data on CAM therapiesare often limited, Dr. Bowling said.

While Dr. Bowling’s center pro-vides printed material and referencesfor patients interested in a particularCAM modality, personal discussionswith patients are invaluable. “Ifwe’re able to talk with patients aboutalternative therapies and make themaware of what might be helpful andwhat might be harmful, we can im-prove the quality of care that we pro-vide,” he said.

CAM THERAPIES OF NOTEFOR THE MS PRACTITIONER

Following are some biologic andother CAM therapies that—becauseof their effectiveness, potential for ad-verse effects, or popularity—may beof interest to clinicians who treat MSpatients. For more information aboutthese and other CAM therapies, seethe resource listing on page 3.

AcupunctureOne large study of acupuncture inMS patients showed improvements

in symptoms such as pain, fatigue,spasticity, and bowel problems; how-ever, the study did not include a con-trol group. More rigorous trials areunder way.4

Acupuncture is usually well tolerated. When performed by atrained practitioner, serious side ef-fects are rare.5

Cold RemediesIt has been suggested that influenzaand the common cold might worsenMS symptoms or trigger attacks.However, some CAM therapies fortreating or preventing respiratory in-fections, such as echinacea, may posesimilar risks because of their im-munostimulatory effects (Table).

Vitamins/CalciumIn addition to helping maintainbone density, vitamin D may havemild immunosuppressive effects,which could be beneficial in MS(though no studies have confirmedsuch benefits).

Because research suggests thatoxidative stress may play an impor-tant role in the etiology of MS,6 it hasbeen suggested that supplementscontaining antioxidants (such as vita-mins A, C, and E) may also be bene-ficial to persons with MS. However,there is no evidence to support this

theory. “Moreover, antioxidants in-crease the production and activity ofimmune cells and thus pose a theo-retical risk to MS patients,” said Dr.Bowling. “In addition, high intake ofvitamins A (> 10,000 IU/d) can betoxic and doses of vitamin C above1,000 mg per day can cause nauseaand diarrhea.”

PsylliumBecause many patients with MS ex-perience constipation, psyllium (aform of dietary fiber) may be a usefulsymptomatic therapy.

St. John’s WortOften used for mild depression, thisherb should be taken under the guid-ance of a clinician because it is a cytochrome P450 inducer that altersthe metabolism of many drugs. Itmay also be sedating.

Dietary FatsThe omega-3 and omega-6 polyun-saturated fatty acids (PUFAs) are thebest-studied nonpharmacologic ther-apy for MS. One randomized trial in-volving 312 patients found a statisti-cal trend (P = .07) for a lowerprogression rate in persons with MStreated with a combination of eicos-apentaenoic acid and docosa-hexaenoic acid.7 Epidemiologic evi-

dence is consistent with these find-ings: countries with a high intake ofpolyunsaturated fatty acids have rela-tively low rates of MS.8

The best dietary source of omega-3 PUFA is fatty fish, said Dr. Bowling,though supplementation with fish oilis necessary to attain the intake levelsused in most studies. Most Americansreceive an adequate supply of omega-6 PUFA from dietary sources. “As reg-ular use of PUFA supplements maycause deficiency in Vitamin E, modestsupplementation (100 IU/d) is desir-able,” he added. MSX

—Peter DoskochNote: Dr. Bowling will chair a symposium on CAMat the 2006 Annual Meeting of the CMSC.

REFERENCES1. Kelly JP, Kaufman DW, Kelley K, et al. Recent trends in useof herbal and other natural products. Arch Intern Med.2005;165:281-286.

2. Nayak S, Matheis RJ, Schoenberger NE, Shiflett SC. Use ofunconventional therapies by individuals with multiple scle-rosis. Clin Rehabil. 2003;17:181-191.

3. Rocky Mountain MS Center. Available at: www.ms-cam.org. Accessed December 28, 2005.

4. Wang H, Hashimoto S, Ramsum D. A pilot study of theuse of alternative medicine in multiple sclerosis patientswith special focus on acupuncture. Neurology. 1999;52:A550.

5. National Institutes of Health Consensus Conference.Acupuncture. JAMA. 1998;280:1518-1524.

6. Gilgun-Sherki Y, Barhum Y, Atlas D, et al. Analysis of geneexpression in MOG-induced experimental autoimmune en-cephalomyelitis after treatment with a novel brain-penetrat-ing antioxidant. J Mol Neurosci. 2005;27:125-135.

7. Bates D, Cartlidge NE, Franch JM, et al. A double-blindcontrolled trial of long chain n-3 polyunsaturated fatty acidsin the treatment of multiple sclerosis. J Neurol Neurosurg Psy-chiatry. 1989;52:18-22.

8. Bates D. Lipids and multiple sclerosis. Biochem Soc Trans.1989;17:289-291.

MS Exchange February 2006 3

Table CAM TREATMENTS WITH POSSIBLEIMMUNOSTIMULATING EFFECTS*

Alfalfa AstragalusBetacaroteneCat’s clawCoenzyme Q10DHEA (dehydroepiandrosterone)Echinacea

GarlicGinseng (Asian or Siberian)GoldensealGrape seed extractLicoriceMelatoninOligomeric proanthocyanidins

PycnogenolSaw palmettoSeleniumVitamin AVitamin CVitamin EZinc

*These supplements have immunostimulating effects in vivo but the clinical implications of these effects in MS remain unknown.

Source: Allen Bowling, MD, PhD.

For more information

Bowling AC. Alternative Medicine and Mul-tiple Sclerosis. New York, New York: DemosMedical Publishing; 2001.

Bowling AC, Stewart TM. Dietary Supple-ments and Multiple Sclerosis: A Health Profes-sional’s Guide. New York, New York:Demos Medical Publishing; 2004.

Cerebellar ataxia (CA) affectsmany individuals with multiplesclerosis (MS). However, relativelyfew studies of pharmacologic andsurgical therapies in the treatmentof this disorder have been con-ducted, reported Jon Marsden,PhD, at the Ninth Annual Confer-ence of the MS Trust in Blackpool,United Kingdom. Moreover, mostforms of physiotherapy and occu-pational therapy for CA havenever been formally tested in per-sons with MS. As a result, little isknown about the optimal treat-ment of this condition.

The symptoms of CA includetremor, dysmetria (inability to es-timate the size of a movement, often leading to overshooting atarget), and dyssynergia (inability to coordinate voluntary musclemovements, resulting in unsteadymotions and staggering gait).However, “not all that wobbles iscerebellar ataxia,” emphasized Dr.Marsden, who is a Medical Re-search Council Clinician ScientistFellow in the Department for Mo-tor Neuroscience and MovementDisorders at the Institute of Neu-rology in London. For example,ataxia can also result fromvestibular dysfunction or sensoryloss. Determining the cause ofataxia is very important, however,because treatment differs accord-ing to etiology.

IDENTIFYINGCEREBELLAR ATAXIA

The underlying cause of CA is dam-age to the cerebellum or its associ-ated pathways, such as the neuro-logic damage caused by MS,explained Dr. Marsden. The cerebel-lum may be involved in controllingcoordination, timing, and motorlearning. As such, CA can impair avariety of functions beyond mobil-ity, including communication, feed-ing, and other activities of daily liv-ing. MS patients with CA tend tohave poorer functional recoveriesfrom exacerbations than do patientswithout CA.1

MAKING A DIAGNOSISTechniques for assessing CA in-clude the International CooperativeAtaxia Rating Scale (ICARS), whichfeatures subscales for postural dis-turbance, limb movement, oculo-motor disorders, and speech disor-ders.2 This test is reliable and is

“sensitive enough to be able to tellthe difference between cerebellardisease and conditions that maymimic it,” Dr. Marsden noted.Nonetheless, the ICARS has beenused primarily in research ratherthan as a clinical tool.

Timed tests (eg, walking) andperformance measures (eg, targetpointing tests) may also be useful ina clinical setting but are nonspecific.For example, they don’t differenti-

ate between slow walking causedby CA and that due to sensory lossresulting from MS.

PHARMACOTHERAPY ANDSURGICAL INTERVENTIONS

Because cerebellar function de-pends on a variety of neurotrans-mitters (eg, glutamate, noradrena-line, serotonin), there are, in theory,several targets for pharmacologictherapy. In practice, however, thedrugs that have been used to treatCA in MS may work in certain casesbut are not very effective as a whole.“The most-studied agent has beenisoniazid; however, all studies ofthe drug have been small and haveyielded conflicting results,” notedDr. Marsden.

Surgical procedures used totreat CA include thalamotomy(surgical ablation of a portion ofthe thalamus) and thalamic stimu-lation, in which an electrode im-planted in the thalamus is con-

nected to a power supply (usuallyplaced in the chest) that can be ac-tivated as desired. Although theseprocedures can be successful inimproving tremor, the improve-ment is often short-term. More-over, even if the tremor improves,the gain in motor function may beminimal, particularly if the patientalso has dysmetria and dyssyner-gia. Morbidity from the procedure,

4 MS Exchange February 2006

UNDERSTANDINGAND TREATINGCEREBELLARATAXIA IN MS

continued on page 9

Cerebellar ataxia (CA) can impair a variety of functions beyond mobility, including communication, feeding, and other activitiesof daily living. MS patients with CA tend tohave poorer functional recoveries from exacerbations than do patients without CA.

IOMSN LaunchesAdvanced Practice

Nursing Program A new comprehensive educationalprogram in MS Advanced PracticeNursing was formally launched inDecember. This initiative is designedto provide advanced practicednurses (APNs) the opportunity todevelop the skills and knowledgenecessary to provide the highestquality of specialized MSnursing care, according toColleen Harris, RN, MN, MSCN,Chair of the program’s appli-cation committee.

Jointly sponsored by theInternational Organization ofMS Nurses (IOMSN) andHoly Name Hospital in Teaneck, NJ,and supported by an educationalgrant from Teva Neuroscience, theAPN educational program will fol-low the model used for the IOMSN’svery successful nurse mentorshipprogram, Ms. Harris said.

Tailored to Nurses’ NeedsUpon applying to the program, can-didates will complete a question-naire designed to indicate whethertheir needs will be best met in a re-search or a clinical track. “In the re-search track, learners will work at anacademic center with an APN who isexperienced in conducting nursingresearch,” explained Ms. Harris. “In

the clinical track, learners will‘shadow’ an experienced APN in hisor her clinical practice. The goal is toenhance the learners’ skills in diag-nosing MS, managing patients’symptoms, and treating patients whoreceive disease-modifying therapy.”

The first part of the three-phaseprogram will consist of a three-daysession at an assigned MS center orresearch facility, depending onwhich track the learner chooses.Phase II will consist of follow-up ses-

sions between the learner and his orher advisor. “These meetings will becustomized to the needs of each pairand may take place in person, or viathe telephone or e-mail,” said Ms.Harris. During phase III, expected totake place 12 to 18 months after theprogram’s start, learners will meet asa group in a central location to sharetheir accomplishments, evaluate theprogram, and receive presentationand leadership skills training.

Through this initiative, learnerswill be provided the chance to beginnetworking within the APN commu-nity, as well as the opportunity to de-velop leadership skills, Ms. Harrisstated.

At the end of the program, eachlearner will be awarded a certificate.He or she may also be eligible to sitfor the MS Certified Nurse (MSCN)exam and to receive funding to coverthe exam’s registration fee.

Qualificationsfor Participants

The IOMSN is currently seeking MSnurses who want to work with amore experienced APN as part ofthis program, as well as APNs to

serve as advisors.Learners must hold an RN

or approved equivalent; haveat least two years of nursingexperience; have a Master’sDegree in Nursing or Certifi-cation in Advanced PracticeNursing; actively work with

MS patients; possess credentials as re-quired by each state; and be anIOMSN member in good standing.

To qualify as an advisor, each ap-plicant must hold a Master’s Degreeor its equivalent; possess appropriatecredentials as determined by eachstate; be a member of the IOMSN ingood standing; actively work withMS patients in clinical practice or in aresearch setting; and have a mini-mum of five years of experience inMS research or patient care. Havingan MSCN certification is preferred.

Application forms may bedownloaded from the IOMSN’s Website at www.iomsn.com. MSX

—Krista Binetti

Multiple Sclerosis Nursing in 2006 A Global Perspective

IOMSN UPDATEO

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MS Exchange February 2006 5

Through this initiative, learners will be provided thechance to begin networkingwithin the APN community.

IOMSN UPDATE

Visual Dysfunctionin MS

Disturbance of vision is one of themost common manifestations ofmultiple sclerosis (MS) and is experi-enced by up to 80% of patients dur-ing the course of their disease.1 Formany, it is the initial clinical symp-tom. “MS can affect any portion ofthe visual sensory system in waysthat can result in significant disabil-ity, greatly compromising a patient’sability to work and to engage in ac-tivities of daily living,” said ElliotFrohman, MD, PhD. “Although manyof these conditions are self-limiting,certain aspects of vision may neverreturn to previous levels.”

Types ofVisual Dysfunction

Optic NeuritisOptic neuritis—or inflammation ofthe optic nerve—affects up to 55% ofthose with MS at least once duringthe course of their disease, accordingto Robert Shin, MD, Assistant Profes-sor of Neurology and Ophthalmol-ogy at the University of MarylandSchool of Medicine in Baltimore. It isalso the first symptom of MS in manycases. According to the Optic Neuri-tis Treatment Trial, 56% of patientswith acute optic neuritis who alsohad one or more white-matter lesionson their baseline brain MRI scan de-veloped MS within 10 years, in con-trast to 22% of optic neuritis patientswho had a normal baseline scan.2

Typically, optic neuritis mani-fests as an acute blurring, graying, orloss of vision in one eye; both eyes

are rarely affected. “The conditionusually resolves by itself within fourto 12 weeks,” said Dr. Frohman, whois Professor of Neurology and Oph-thalmology and Director of the MSProgram & MS Clinical Center at theUniversity of Texas SouthwesternMedical Center, Dallas. However,the quality of a patient’s vision—in-cluding color perception, depth per-ception, and contrast sensitivity—may be reduced indefinitely.

Interestingly, it is possible for apatient to experience inflammationand/or demyelination of the opticnerve without experiencing any ap-preciable visual dysfunction. “Insuch cases, visual evoked potential(VEP) testing demonstrates lesionson the optic pathways, despite a pa-tient’s reported lack of symptoms,”Dr. Frohman said. A positive VEPmay be useful in the diagnosis of MS,as it can provide evidence of a seconddemyelinating event, even if the pa-tient is not experiencing symptoms.

“Some studies suggest that MSpatients who experience optic neuri-tis as an initial clinical event have amore favorable prognosis than thosewho present with visual problemslikely to result from brainstem dys-function, such as diplopia or nystag-mus, early in the disease. However,this has not been definitely proven,”added Dr. Shin.

Eye MovementAbnormalities

“Approximately 75% of MS patientsdemonstrate some type of eye move-ment abnormality,” said Dr.Frohman. Such ocular dysfunction

may correlate with poor diseaseprognosis: In one study of 50 MS pa-tients, those with abnormal eyemovements were significantly moredisabled than those with normal eyefunction.3

One common type of eye move-ment abnormality is nystagmus, arepetitive, back-and-forth movementof the eye(s). “This can reflect abnor-malities in the mechanisms that holdimages on the retina,” Dr. Frohmanexplained.

“Nystagmus may result from anMS attack in the vestibular part ofthe brainstem or the cerebellum ormay occur in the setting of internu-clear ophthalmoplegia (INO),”added Dr. Shin.

Manifesting as a weakness orparalysis of eye movements and oc-curring in approximately one thirdof MS patients, INO is also a com-mon cause of diplopia, or double vi-sion, which occurs when the eyes arenot moving in tandem.

Other symptoms of INO includeblurred vision and oscillopsia (rotat-ing, circular eye movement). Whenboth eyes are affected, some degreeof demyelination is indicated.“However, many patients with INOmay present without symptoms, orwith a ‘blur’ instead of true doublevision,” said Dr. Shin.

Diagnosing VisualDysfunction inthe MS Patient

A definitive diagnosis of visual dys-function can often be made througha clinical examination that includes athorough history, explained Dr.Frohman (Table).

6 MS Exchange February 2006

IOMSN UPDATE

MS Exchange February 2006 7

For example, most patients withoptic neuritis will present with a re-duction of central acuity. “Patientsmay complain of difficulty in seeingother people’s faces, or report thatthere is a ‘line’ in their center of vi-sion,” noted Dr. Shin.

On examination, a patient withoptic neuritis may have an afferentpupillary defect, or asymmetry inthe pupils’ reaction to light, Dr. Shinexplained. Diagnosis of the condi-tion can be confirmed with VEP, orT1-weighted MRI with gadoliniuminfusion, Dr. Frohman added.

During a clinical visit, a patientmay demonstrate an obvious dys-function in eye movement. “How-ever, a misalignment may be difficultto detect without the use of ophthal-mologic tools,” admitted Dr. Shin.

Double vision, usually identifiedby the patient, may be easily con-firmed by the clinician. “An impor-tant question to ask patients whocomplain of double vision iswhether the problem disappears ifeither eye is closed,” said Dr. Shin. Ifso, diplopia is confirmed.

Treatment“For optic neuritis, corticosteroidsare the cornerstone of therapy,”stated Dr. Shin. “Although theydon’t appear to improve visual out-come in the long run, they do seemto speed visual recovery.”

Diplopia often resolves on itsown, though corticosteroids are oftenprescribed in an attempt to hastenrestoration of normal vision. “Use ofan eye patch is guaranteed to tem-porarily ‘cure’ diplopia, but some pa-tients may feel self-conscious while

wearing it,” said Dr. Shin. Prisms canalso be added to an existing eyeglassprescription to alleviate double vi-sion. In rare cases, strabismus surgerymay be attempted to realign the eyes.

Treatment of nystagmus is chal-lenging, as most pharmacologicagents are only moderately effective,said Dr. Frohman. Baclofen, clo-nazepam, gabapentin, and scopo-lamine provide some benefit in se-lected patients. In rare cases, surgerymay help.

While visual symptoms are verycommon in the MS population, mostdysfunction is self-limiting andrarely results in total blindness,stressed Dr. Shin. “By inquiringabout visual disturbances and refer-ring patients to a neuro-ophthalmol-

ogist when problems are suspected,MS nurses can help patients have thebest possible prognosis.” MSX

—Krista Binetti

REFERENCES1. Frohman EM. Vision. In: van den Noort S, Holland N(eds): Multiple sclerosis in clinical practice. New York:Demos Medical Publishing, 1999.

2. Beck RW, Trobe JD, Moke PS, et al, for the Optic Neu-ritis Study Group. High- and low-risk profiles for the de-velopment of multiple sclerosis within 10 years after op-tic neuritis. Experience of the Optic Neuritis TreatmentTrial. Arch Ophthalmol. 2003;121:944-949.

3. Downey D, Stahl J, Bhidayasiri R, et al. Saccadic andvestibular abnormalities in multiple sclerosis: sensitiveclinical signs of brainstem and cerebellar involvement.Ann NY Acad Sci. 2002;956:438-440.

SUGGESTED READINGFrohman EM, Frohman TC, Zee DS, et al. The neuro-ophthalmology of multiple sclerosis. Lancet Neurol.2005;4:111-121.

Table IDENTIFYING VISUAL DYSFUNCTIONIN THE MS PATIENT

According to Dr. Shin, there are several ways an MS nurse can identify possible visualdysfunction during an office visit. Some of his recommendations:

• Take a careful history. Ask the patient to describe any visual problems he or sheis having.

• Determine whether the visual problem is present in only one eye, both eyes individually, or only when both eyes are open.

• Check visual acuity in each eye while patient is wearing his or her glasses.• Check for an afferent pupillary defect by swinging a flashlight from one eye to the

other. Compare each pupil’s reaction to light and note any asymmetry.• If optic neuritis is suspected, check color vision by asking the patient to look at a

brightly colored object with each eye and report how vivid the color appears.• Carefully examine the patient’s eyes in primary position (straight ahead) and in all

fields of gaze (right, left, up, and down) for any movement limitation or nystagmus.Examine slow eye movements (pursuit) as well as quick ones (saccades).

• If possible, use an ophthalmoscope to look for optic nerve pallor. “Sometimes a verysubtle nystagmus can be discovered at the same time,” said Dr. Shin.

• When in doubt about any visual problem an MS patient may be experiencing, consult a neuro-ophthalmologist.

IOMSN UPDATE

Helping PatientsMake the Most ofMedicare Part D

The sweeping changes broughtabout by the Medicare Moderniza-tion Act are well under way. How-ever, some patients, including thosewith multiple sclerosis (MS), stillmay be overwhelmed by the numberof prescription drug plans availableto them under Medicare Part D—asubsidized program administeredby private health insurance compa-nies. “As a result, some patients mayfeel unsure about how to proceed,”said Karen Techner, MAT, Intake Co-ordinator at the Rocky Mountain MSCenter King Adult Day EnrichmentProgram in Denver.

Finding a PlanMedicare typically covers Social Se-curity retirement recipients over 65.Younger individuals with MS are el-igible if Social Security considersthem permanently disabled and hasprovided them with disability bene-fits for at least 24 months.

Patients who have Medicare-only insurance have until May 15,2006 to enroll in a plan. (The excep-tion is for those who have creditablecoverage, which means that a pa-tient’s present drug coverage is con-sidered to be at least as good as stan-dard Medicare coverage.) If patientsmiss the deadline, they may be sub-ject to a lifetime premium penalty ofan additional 1% per month insteadof benefiting from the long-term costsavings that the new drug plan willafford.

Providers should encouragethese patients to log onto Medicare’sWeb site (www.medicare.gov) to ob-tain step-by-step instructions for en-rollment, Ms. Techner advised.When enrolling, patients shouldhave their Medicare card and a list oftheir prescribed medications anddosages handy. In choosing a plan, itis important to make sure that thepatient’s prescribed drugs are ontheir specific provider’s formulary.“So far, we’ve found that all of theMS medications are covered by oneplan or another,” Ms. Techner added.

Premium payments vary accord-ing to formulary options and the pa-tient’s geographic region. Addition-ally, some Medicare-only patientsmay qualify for further subsidies. “Ifthe patient is unsure about which op-tion is best, it may be easier for theclinician to review the options andadvise the patient on the most cost-effective plan,” Ms. Techner said.

Dual Eligibility:Overcoming Obstacles

For patients who qualify for bothMedicare and Medicaid (dual eligi-bility, typically determined by state-devised income guidelines), theprocess may be somewhat simpler,as they were automatically enrolledinto a plan by January 1.

“However, don’t assume thatbecause somebody was [automati-cally] assigned to a plan that it cov-ers all of his or her medications,” Ms.Techner stressed. The patient mayhave to be re-enrolled under a moresuitable plan. Also, there may be atime lag between automatic or earlyenrollment and the arrival of a new

insurance card, which may causeconfusion at the pharmacy whenprescriptions are being filled. Inthese cases, pharmacy staff can usethe patient’s old Medicare card todetermine his or her new plan.

“Health care providers are busy people,” Ms. Techner acknowl-edged. As a consequence, referringpatients to a national agency or orga-nization for enrollment help and in-formation may be in order (see“Medicare Part D Resources”). Shealso recommended steering patientstowards local or state coalitions andnonprofit organizations for furtherassistance. MSX

—Adriene Marshall

Medicare Part D ResourcesFor questions on Medicare’s new pre-scription drug coverage premiums forspecific MS therapies, patients cancontact the drug manufacturer.Avonex® (MS Active Source™):(800) 456-2255Betaseron® (MS PathwaysTM):(800) 788-1467Copaxone® (Shared Solutions®):(800) 887-8100Novantrone® and Rebif®

(MS LifeLines™): (877) 447-3243

Other ResourcesMedicarewww.medicare.govNational MS Societywww.nmss.orgEldercare Locatorwww.eldercare.govAccess to Benefits Coalitionwww.accesstobenefits.orgMedicare Rights Centerwww.medicarerights.org

8 MS Exchange February 2006

such as seizures, has also been reported.

Because pharmacologic agentsand surgery rarely yield completelysatisfactory long-term results, com-pensatory and restorative tech-niques are important for MS pa-tients with CA (sidebar). Clinically,the emphasis has been on compen-satory approaches, such as usingadaptive aids, making environmen-tal modifications, and learning new strategies.

ADAPTIVE STRATEGIESMany compensatory aids utilize vis-cous forces to reduce the effects of

tremor. For example, ataxic computerusers can attach a device to theirmouse that is designed to reduce un-steadiness as they point and click.There is some evidence in the litera-ture that Lycra® garments may facili-tate movement for persons with cere-bral palsy and other neuromotordeficits, either by dampening tremoror altering sensory feedback.3 Thisapproach is beginning to find favoramong persons with MS in theUnited Kingdom, although clinicalstudies have not yet been conducted.

Another compensatory strategyis to learn new strategies for perform-ing tasks, such as breaking a large

motion down into several smallermovements that involve moving onejoint at a time.

Restorative approaches, such asperforming exercises that strengthenmuscles, may also be helpful. In Eu-rope, the most commonly used ap-proach is rhythmic stabilization,which is intended to improve proxi-mal control, Dr. Marsden said. An-other approach is a program of exer-cises similar to those used forvestibular rehabilitation; however,neither strategy has been formallystudied in ataxic MS patients.

CHALLENGES TO TREATMENTThere are several reasons why CAhas proven hard to treat in MS pa-tients, Dr. Marsden explained. “First,there is evidence to support the factthat cerebellar lesions cause not onlymotor symptoms but also cognitiveand affective deficits. Therefore, wemight be overlooking the fact thatsome MS patients with cerebellarataxia also have cognitive and affec-tive problems, which would obvi-ously impact how they function andhow well they respond to treatment,”Dr. Marsden noted.

Another hurdle to therapy is thatthe ability to learn new movements ismodulated by the cerebellum. How-ever, if this region has been damagedby MS lesions, learning new move-ments (or relearning old ones) maypresent formidable challenges for pa-tients, said Dr. Marsden. MSX

—Peter Doskoch

REFERENCES1. Langdon DW, Thompson AJ. Multiple sclerosis: a pre-liminary study of selected variables affecting rehabilita-tion outcome. Mult Scler. 1999;5:94-100.

2. Trouillas P, Takayanagi T, Hallett M, et al. Interna-tional cooperative ataxia rating scale for pharmacologi-cal assessment of the cerebellar syndrome. J Neurol Sci.1997;145:205-211.

3. Hylton N, Allen C. The development and use of SPIOLycra compression bracing in children with neuromotordeficits. Pediatr Rehabil. 1997;1:109-116.

MS Exchange February 2006 9

MANAGING SYMPTOMS OF ATAXIA

Although any type of ataxia is difficult to treat, there are tips patients can followto help them compensate for the disorder, according to Wendy Hendrie, MSc,MCSP, head physiotherapist at the MS Therapy Centre in Swaffham, UK. Follow-ing are some pointers that she recommends to her patients.

For Intention Tremor in the Upper Limbs

Use single joint movements. “For example, when eating, support the body fullyin a chair and lean the elbow on a high table before bringing a utensil to themouth,” Ms. Hendrie said.

Keep the trunk well supported. Make sure to sit in a sturdy chair with arm sup-ports, if possible. “The arms will shake less if the trunk is stabilized,” Ms. Hendrie explained.

Don’t look directly at an object. “Doing so may worsen tremor,” she said. “In-stead, patients should try reaching for objects from different angles to discover ifone position results in less tremor.” For example, it may be easier to pick up adrink placed to one side of the body than one placed in front.

Use weights. Wrist weights may help to ease shaking. However, Ms. Hendrie cau-tions her patients against using very heavy weights, which will fatigue the mus-cles more quickly and/or worsen tremor.

Cool muscles. “Using an ice pack to cool forearm muscles has been shown to re-duce tremor for up to 45 minutes,” she said. This may be particularly helpful before activities such as eating a meal.

For Ataxia of the Lower Limbs

Use a four-wheeled walker. “Doing so can increase walking speed and facilitatedaily activities,” said Ms. Hendrie.

Exercise (gently). Yoga, tai chi, and Pilates may be helpful for people in the earlystages of ataxia.

ATAXIA . . . continued from page 4

The unpredictable course of multiplesclerosis (MS) leaves those affectedwith an uncertain future. Recent ad-vances in understanding the diseaseand its treatment have improved theability of health care professionals tohelp MS patients and their families.In addition to providing an accuratediagnosis and supportive care, treat-ment now can be directed towardchanging the disease course. As a re-sult, MS nurses worldwide are facedwith many challenges as they meetthe needs of their patients.

The MS nurse is a competent ex-pert who collaborates with those af-fected by MS and shares knowledge,strength, and hope. MS nurse special-ists have drawn from research, edu-cation, and practical experiences todevelop a new and cohesive modelof nursing care in MS, one which willsustain and educate nurses in theirclinical practice, promote nursing re-search, and inspire a new generation

of MS nurses as they enter the field. This model is the leitmotiv of the International Organization ofMultiple Sclerosis Nurses (IOMSN),the umbrella organization for a number of multinational MS nursingorganizations.

THE IOMSN:DEVELOPING A MODEL

FOR MS NURSING PRACTICEFounded in 1997, the IOMSN hasgrown from a small corps of MSnurses to over 1,000 members from 27 countries. Over 400 nurses havepassed the certification examinationfor MS nursing, thus earning the titleof MS Certified Nurse (MSCN). My,how we have grown!

Nursing practice aims to man-age and influence the patient’s illness by supporting disease-modi-fying treatments; facilitating symp-tom management; promoting safeand maximal function; and fosteringa wellness-oriented quality of life.

Activities that are essential topatient care can be grouped into cat-egories: establishing care; continuingcare; and sustaining care. Together,these interwoven areas provide aframework for a comprehensivemodel for MS nursing practice that can be applied to care of all MS patients, regardless of diseaseclassification or level of disability.

LOOKING TO THE FUTUREThe goals of the IOMSN are to sus-tain its current level of member-

ship and to expand its impact dur-ing the coming years. It is hopedthat the specialty of MS nursingwill become internationally recog-nized as a vital component of life-long MS care. To achieve thesegoals, the IOMSN has developedand implemented the followingprograms:

• A mentorship program for MSnurses entering the field

• An advance practice nursing ad-visory program in both clinicalcare and research (see page 5)

• An academic outreach toschools of nursing throughoutNorth America and in affiliatecountries

In addition, we will continue our existing informational programs:

• MS Exchange and the InternationalJournal of MS Care

• Our official, interactive Web site:www.iomsn.org

• Annual and regional meetingsfor regular MS nursing updates

The IOMSN welcomes input andsuggestions for future programs andideas to enhance our services to theMS nursing community. We hope tocontinue our growth and develop-ment through the support of our cur-rent membership and potential newmembers.

The long-term goal of theIOMSN is to reclassify MS as a dis-ease with a cure; in the interim, wecontinue to strive to improve thelives of all those affected by the dis-ease worldwide. MSX

10 MS Exchange February 2006

From My Perspective . . .In this new, ongoing column, leaders in MS care and research will discuss current issues of note to the MSnursing community. In this first column, IOMSN Executive Director June Halper discusses the importanceof developing a comprehensive, cohesive model for nursing practice in the rapidly changing field of MSand the role of the IOMSN in achieving this goal.

June Halper, MSCN, ANP, FAAN, is the Executive Director of the IOMSN and the Consortium of Multiple Sclerosis Centers. She is also the Executive Director of the BernardW. Gimbel Multiple Sclerosis Comprehensive Care Center in Teaneck, NJ and is one of the founding editors of MS Exchange.

THE IOMSN:STRIVING FOREXCELLENCEIN MSNURSING CARE

June Halper, MSCN, ANP, FAAN

EARLIER DETECTIONOF SPINAL CORD

ATROPHY IN RRMSSerial upper cervical cord atrophy(UCCA) measurement is useful fordetecting the development of spinalcord atrophy early in the diseasecourse of relapsing-remitting MS(RRMS), according to a recent UnitedKingdom study published in theJournal of Neurology, Neurosurgery, andPsychiatry. Over the course of thethree-year investigation, significantUCCA atrophy occurred only inRRMS patients, in contrast to a con-trol group, the authors reported.

Included in the analysis were 19women and eight men with RRMS,all within three years of symptomonset; median Expanded DisabilityStatus Scale (EDSS) score was 1.0(range 0 to 3.0). These patients and 20healthy controls underwent MRIscanning at baseline and annually forup to three years. Changes in UCCAwere compared between the groups.

Patients’ rate of UCCA duringthe study period was significantlyfaster than that of controls (mean dif-ference per year: –1.161 mm2; P =0.001). In year 3, the difference inUCCA from baseline between pa-tients and controls reached border-

line significance (mean difference:–4.239 mm2; P = 0.074).

During follow-up, patients expe-rienced significant increases in EDSSscores and in brainstem, pyramidal,and bowel and bladder symptomfunctional scores, though none en-tered the secondary progressivestage of MS.

Although this was the first studyto longitudinally investigate RRMSpatients “as early and for as long a pe-riod of time,” more study is requiredto determine whether early cord atro-phy predicts future disability due tomyelopathy, the authors concluded.Rashid W, Davies GR, Chard DT, et al. Increasing cordatrophy in early relapsing-remitting multiple sclerosis: a3 year study. J Neurol Neurosurg Psychiatry. 2006;77:51-55.

BONE MARROWTRANSPLANT FAILS

TO SLOW MS PROGRESSIONA recent study from the Netherlandsfound that a radical immunosuppres-sive regimen involving total T cell ab-lation and autologous bone marrowtransplantation led to serious adverseeffects and did not stave off clinicaldeterioration in MS patients with sec-ondary progressive disease.

At baseline, the eight women andsix men who participated in the studyhad a rapidly deteriorating diseasecourse but retained the ability towalk. Bone marrow was aspiratedfrom the posterior iliac crest, and Tcell ablation was achieved throughinfusion of antithymocyte globulinand through irradiation. (CD34 pu-rification was used to concentratestem cells and deplete T cells in thehematopoietic graft.) The autologousgraft was reinfused via a central ve-

nous catheter. Patients were followedfor seven months to three years.

Nine of the 14 patients studiedreached the level of treatment failure,defined as rise in EDSS score of 0.5 ormore, sustained for at least sixmonths, the researchers from Eras-mus Medical Centre in Rotterdamobserved. In addition, all posttrans-plant patients experienced alopecia,loss of dexterity, and general fatigue.

Since other studies on stem celltransplantation in MS patients imple-menting milder immunosuppressiveprotocols have yielded better results,“the question arises as to whether therapid progression seen in our studycould be related to the neurotoxicityof the [extreme immunosuppressive]procedure itself,” stated the authors.

Due to the lack of efficacy of thisregimen and the serious adverse ef-fects that patients experienced, the re-searchers do not recommend futurestudies using similar protocols. MSXSamijn JPA, te Boekhorst PAW, Mondria T, et al. IntenseT cell depletion followed by autologous bone marrowtransplantation for severe multiple sclerosis. J NeurolNeurosurg Psychiatry. 2006;77:46-50.

MS Exchange February 2006 11

LITERATUREMONITOR/NEWS ROUNDUP

MS Exchange is published four times per year (February, May, August, and November) by Jobson Publishing, LLC, a wholly-owned subsidiary of Jobson Medical Information LLC, 100 Avenue of the Americas, NewYork, NY 10013-1678.Copyright © 2006 by Jobson Publishing, LLC. No part of this publication may be reproduced, stored in a retrieval system, or transmitted by any means—mechanical, photocopying, electronic, recording, or otherwise—without written permission from the publisher. The statements and opinions contained in the articles in this publication are solely those of the individual authors and contributors and not of the publisher, Editorial Board,or sponsors. The publisher disclaims responsibility for any injury to persons or property resulting from any ideas or products referred to in this publication.Subscription inquiries should be directed to MS Exchange, Jobson Medical Group, 1515 Broad Street, Bloomfield, NJ 07003; telephone (973) 954-9300; fax (973) 954-9306. MSE0601. All editorial correspondence shouldbe sent to MS Exchange, Jobson Medical Group, 1515 Broad Street, Bloomfield, NJ 07003. This publication is made possible through an unrestricted educational grant from Teva Neuroscience.

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CONTINUING EDUCATION CONFERENCE CALENDARApril 1–8, 200658th Annual Meeting of the American Academy of Neurology.Location: San Diego, Calif. Contact: AAN Member Services,1080 Montreal Avenue, St. Paul, MN 55116; (800) 879-1960; fax: (651) 695-2791; e-mail: membership@aan.com; Web site:www.aan.com.

April 22–25, 200638th Annual Meeting of the American Association of Neuro-science Nurses. Location: San Diego, Calif. Contact: AANN,4700 W. Lake Avenue, Glenview IL 60025; (888) 557-2266 (USonly); (847) 375-4733; fax: (877) 734-8677; e-mail:info@aann.org; Web site: www.aann.org.

September 2–5, 200610th Congress of the European Federation of Neurological So-cieties. Location: Glasgow, UK. Contact: EFNS Head Office,

Breite Gasse 4–8, A-1070 Vienna, Austria; +43 1 889 05 03; fax: +43 1 889 05 03 13; e-mail: headoffice@efns.org; Web site:www.kenes.com/efns2006.

September 27–30, 200622nd Congress of the European Committee for Treatment and Research in Multiple Sclerosis. Location: Madrid. Contact: AKM AG, Clarastrasse 57, PO BoxCH-4005, Basel, Switzerland; +41 61 686 77 77; fax:+41 61 686 77 88; e-mail: info@akm.ch; Web site:www.akm.ch/ectrims2006.

October 8–11, 2006131st Annual Meeting of the American Neurological Association.Location: Chicago. Contact: ANA, 5841 Cedar Lake Road, Suite204, Minneapolis, MN 55416; (952) 545-6284; fax: (952) 545-6073;e-mail: julieratzloff@llmsi.com; Web site: www.aneuroa.org.

CMSC 2006 ANNUAL MEETING

The 2006 Annual Meeting of the Consortium of Multiple Sclerosis Centers will take place May 31 to June 3 at the Westin Kierland Resort inScottsdale, Arizona. The theme is “Celebrating 20 Years of Excellence in MS Care and Research.” Presentations will pertain to timely issues involving MSpatient care and basic and clinical research, as well as those that reflect collaboration between specialties. Go to www.mscare.org for additional informa-tion, or contact Tina Trott, Executive Assistant, Consortium of Multiple Sclerosis Centers, c/o Gimbel MS Center, 718 Teaneck Rd, Teaneck, NJ 07666; (201) 837-0727 ext 120; fax: (201) 837-9414; e-mail: tina.trott@mscare.org.