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For Health Care Professionals
Updated 18-May-2006

Do you, or your patients, need information on a GBS/CIDP related issue not described in this website? Please email your suggestions and comments, and I'll do my best to incorporate these.
Your comments may be incorporated in the website and newsletters, so please state whether you want your name acknowledged.


This month's news

Mayday Pain & Society Fellowship 2006: Call For Applications
The Mayday Fund is dedicated to alleviating the incidence, degree, and consequence of human physical pain. Applications for the 2006 Mayday Pain & Society Fellowship: A Media & Policy Fellows Initiative, are being accepted until June 1, 2006.
The program is designed to equip physicians, nurses, pharmacists, social workers, scientists, and legal scholars with the necessary skills to become effective advocates and spokespeople about pain issues in the United States and Canada.

Endometrial cancer patient developed Guillain-Barre syndrome after adjuvant chemoradiotherapy [reg. reqd, free]

Neuropathic Pain: An Update on Effective Management Strategies
Medscape. [reg. reqd, free]

Nursing and supporting patients with chronic pain (PDF)
Nursing Standard Jan 18 2006; 20 (19): 60-65
Inadequate pain management results when nursing staff dealing with chronic pain patients harbour misconceptions and negative attitudes, as well as lack of knowledge.

Check "Research & trials" for on-going research & trials recruiting patients.

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Clinical features, diagnosis, differentials, treatment etc.

GBS - diagnosis and misdiagnosis
J. Goldstein, MD Yale University School of Medicine, USA.
New Insights Into the Mechanisms of IVIg-Mediated Recovery in GBS
K.A. Sheikh, Department of Neurology, Johns Hopkins, USA. Partnership for Prescription Assistance (USA only)
This website is for patients, caregivers, prescribers. PPA helps qualifying patients who lack prescription coverage get the medicines they need through the public or private program that's right for them. Many will get them free or nearly free. Call toll-free 1-888-4PPA-NOW (1-888-477-2669).
Proinflammatory cytokine responses induced by influenza A (H5N1) viruses in primary human alveolar and bronchial epithelial cells
Chan, Cheung, Chui et al., Respiratory Research 2005, 6:135 (11 Nov. 2005).
EMG Findings of Axonal Polyneuropathy
[registration reqd, free]
Does an axonal polyneuropathy necessarily display increased insertional activities? If nerve conduction velocity studies are consistent with an axonal polyneuropathy, can such a diagnosis be made even without fibrillation or positive waves?
New guidelines for the treatment of GBS

[registration reqd, free of charge]
American Academy of Neurology (AAN)'s new guidelines for the treatment of GBS, emphasizing early treatment with either IVIg (preferred when available) or PE. More on the implications.
Neurology. 2003;61:736-740
Decrease in Guillain-Barre Syndrome Following Influenza Vaccination [registration reqd, free of charge]
The Nov. 23 issue of JAMA reports that a 12-year surveillance study has found the number of cases of Guillain-Barre syndrome associated with influenza vaccination have decreased.
Guillain-Barré syndrome associated with central nervous system lesions
GBS associated with CNS manifestations is described (encephalomyeloradiculoneuropathy).
Okamura et al. Archives of Disease in Childhood 2002;86:304-306
Childhood Guillain-Barré Syndrome
Contrast-enhanced spinal MRI may prove useful in diagnosis. Follow-up images may help predict the clinical course.
Acta Radiol 2003 Mar;44(2):230-5
Long-term prognosis for Guillain-Barre syndrome: evaluation of prognostic factors and clinical experience of automated double filtration plasmapheresis
Disability at the nadir influences the outcomes, so early diagnosis and appropriate treatment are essential, to prevent further neurological deficits and maximise survival.
J Clin Apheresis. 2003;18(4):175-80.
Potential New Therapy for Patients with IVIG-Dependent CIDP
K.C. Gorson, M.D., Neuromuscular Service St. Elizabeth’s Medical Center, Boston USA.
Acute Flaccid Paralysis Linked to West Nile Virus
Patients presenting with AFP should be screened for WNV before beginning treatment for presumed GBS.
Morb Mortal Wkly Rep. 2002;51(37):825-828
Methylprednisolone Did Not Significantly Benefit Patients Treated With Immunoglobulin for Guillain-Barre Syndrome
Adding methylprednisolone to standard IVIg treatment in patients with GBS conferred no significant benefit over IVIg alone.
Lancet 2004;363:192-96.
Corticosteroids for Guillain-Barré syndrome (Cochrane Review)
Considering corticosteroids to hasten recovery and reduce the long term morbidity from GBS? Reviewers conclude corticosteroids should not be used in the treatment of GBS.
Hughes RAC, van der Meché FGA. Cochrane Library, Issue 2 2003.
Chronic acquired demyelinating symmetric polyneuropathy classified by pattern of weakness
Presence or absence of proximal weakness indicates differences in clinical course, disability, and treatment response.
Mygland A, Monstad P. Arch Neurol 2003 Feb;60(2):260-4
eMedicine - D. Fanion, MD, & D.M. Joyce, MD & eMedicine - Angela Cha-Kim, MD.
Both links describe clinical features, differentials, workup, treatment, medication, follow-up, etc.
Merck Praxis.MD - Approach to the Patient with Peripheral Neuropathy
Best Practice Brief. Checklist for diagnosis and treatment.
GBS - A GP's guide
Diagnosis, clinical points, variants, etc.
Intravenous immunoglobulin for Guillain-Barré syndrome (Cochrane Review)
No adequate trials exist to determine if IVIG is more beneficial than placebo. IVIG and PE have a similar ability to speed recovery. Giving IVIG after PE is not significantly better than PE.

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Mild GBS

Mild Guillain-Barré Syndrome
Study attempts to determine the frequency of mild GBS with the persistent ability to walk. It also examines possible predictors that indicate whether the illness would remain mild.
Arch Neurol. 2001;58:1098-1101.
Infections and course of disease in mild forms of Guillain-Barré syndrome
The presence of residuals in patients with mild GBS may advocate the use of early treatment in mildly affected patients.

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Supportive treatment

Arcade doubles as source of therapy - Fun and games provide way to relearn skills
Therapists find that arcade games — such as video driving games — can help patients relearn basic skills requiring hand-eye coordination, fine motor skills and balance.
Mechanical Ventilation in GBS: Imperative But Also Imperfect

Management of mechanical ventilation in GBS patients.
The Communicator, Spring 2002.

Use of a Behavioural Pain Scale to assess pain in ventilated,
unconscious and/or sedated patients
(PDF)
Young, Siffleeta, Nikoletti & Shaw. Intensive and Critical Care Nursing 2006 Feb; 22(1):32-39.
The BPS was found to be reliable in assessing pain in sedated/unconscious patients. More research is required into objective pain assessment and identification of painful routine procedures to enhance pain management in these patients.
Early predictors of mechanical ventilation in Guillain-Barre syndrome
Predictors were identified in patients requiring mechanical ventilation. The value of early mechanical ventilation in high-risk patients showing these indicators may deserve investigation.
Crit Care Med 2003 Jan;31(1):278-83
Electrophysiology to predict mechanical ventilation in Guillain-Barre syndrome
Electrophysiological demyelination may predict a need for ETMV.
Eur J Neurol 2003 Jan;10(1):39-44
Guillain-Barre syndrome--a patient guide and nursing resource
Axone. 2001 Jun; 22(4): 16-24

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Psychological support

Demoralization - A Syndrome Which Should Not Be Confused With Depression
Cultural Awareness: A Prescription for More Effective Medicine
Aliza Lifshitz, MD, Internist, Cedars-Sinai Medical Center, USA.
[reg. reqd., free]
Psychotic symptoms and emotional distress in patients with Guillain-Barre syndrome
Caused by motor deprivation and loss of communication,psychotic symptoms may indicate the need for continuous psychosocial support and psychopharmacological measures.
Eur Neurol 2002;47(2):74-8
Towards Understanding the Molecular Basis of Poor Recovery in GBS
K.A. Sheikh, Dept of Neur., Johns Hopkins, USA.
A few simple things I do for my GBS patients
B.O.Khatri, MD. Director, Center for Neuro. Disorders, WI, USA

"Doctors told her the sudden, paralyzing illness she contracted had no certain cause nor cure... Doctors called it Guillain-Barré Syndrome, but deep inside, she considered it punishment for placing her husband in a nursing home..."
From an article about Hispanics attitude towards nursing homes, this statement also describes the attitude of many patients towards Guillain-Barre syndrome. Depending on their culture and background, they fear, or may even be told that the disease is a punishment for something they've done, and that they will never recover... [Read article]

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Post-GBS symptoms and problems

A dental hygienist with a GBS patient asks if there is a correlation between the patient's condition and her periodontal health. Read her query and the replies from several healthcare professionals.
Webmaster, 01.2006
A review of the management of Guillain-Barre syndrome in a regional neurological rehabilitation unit
Many patients are discharged without access to rehab services. These results suggest that rehabilitation makes a significant difference and should be available to all patients with GBS.
Int J Rehabil Res. 2003 Dec; 26(4): 297-302.
"Post-GBS": Pain, sensory disturbances, motor problems, fatigue and other residual symptoms experienced by ex-patients.

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Neuropathic Pain

Two-drug combo lessens chronic nerve pain [reg. reqd, free]
A combination of morphine and gabapentin controls chronic nerve pain better than either drug alone, and at lower doses.
Fentanyl Effervescent Buccal Tablets in Patients With Chronic Pain
[reg. reqd, free]
Pain Information at your Fingertips
A group of leading European specialists have launched a new publication and website in an attempt to reduce the high levels of under-treatment of chronic pain across Europe. Paineurope contains feature articles on treatment-based issues, news updates, clinical comparisons, a research round-up and an interactive question and answer section. Available in several languages, Paineurope is free for healthcare professionals interested in managing pain. Register (online access) or email (paper copy).
Neuropathy pain management guidelines published

Guidelines developed and published by leading international experts in pain management, to help improve diagnosis and management of patients suffering from chronic neuropathic pain.
Advances in neuropathic pain: diagnosis, mechanisms, and treatment recommendations
Dworkin RH, Backonja M, Rowbotham MC, et al., Arch Neurol. 2003 Nov;60(11):1524-34
Gabapentin for the treatment of pain in guillain-barre syndrome...
Gabapentin: an alternative for pain management of GBS patients.
Anesth Analg 2002 Dec; 95(6):1719-23
Focus on Pain: Resources on the internet

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Intimacy & GBS/CIDP

Neurosexology
"Sexual dysfunction is observed in many neurological disorders.... Although not as obviously limiting as.. paresis and pain, it is most disruptive for patients' lives. With emerging awareness of the primary importance of quality of life as the most important indicator of good patient management, and with the advent of more effective treatment of sexual dysfunction, it is no longer acceptable to ignore this very important dimension of life."
Lundberg et al., (2001), European Journal of Neurology,
Supplement, 8.

Ingen helhed uden sex
. [Danish]
Vejledning til ergo- eller fysioterapeuter, hvis patienter eller klienter, på grund af sygdom eller handicap, også er berørt på deres seksualitet. Om at bruge egne, almenmenneskelige erfaringer og patientens egen viden om problemet, personligt mod, systematik, og en stor lydhørhed overfor patientens behov.
Seksualitet - for mennesker med nedsat funktionsevne [Danish]
Informationer om projekter, centre og litteratur.
GBS & Intimacy: patient-to-patient forum at this website.

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Vaccines & GBS/CIDP

Does informing patients of the risk of acquiring GBS following influenza vaccination have an effect on their willingness to be vaccinated?
Health Canada report (2000).

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CIDP, MFS and other sub-variants

Cytotoxic drugs and interferons for chronic inflammatory demyelinating polyradiculoneuropathy (Cochrane Review)
Insufficient evidence exists on whether azathioprine, interferon beta or any other immunosuppressive drug or interferon is beneficial in CIDP.
The Cochrane Library, Issue 1, 2004.
Intravenous immunoglobulin for chronic inflammatory demyelinating polyradiculoneuropathy (Cochrane Review)
IVIG improves disability for at least 2-6 weeks compared with placebo. IVIG, PE and prednisolone seem to be equally effective. Cost, side effects, duration of treatment, dependency on regular hospital visits and ease of administration all have to be considered before deciding which treatment should be first choice.
Immunotherapy for IgM anti-Myelin-Associated Glycoprotein paraprotein-associated peripheral neuropathies (Cochrane Rev.)
Intravenous immunoglobulin is relatively safe and may produce some short-term benefit.
The Cochrane Library, Issue 1 2003.
Review of 1027 Patients With Newly Diagnosed Multiple Myeloma
Monoclonal gammopathy of undetermined significance (MGUS) appears to be a significant risk factor in the development of MM.
Mayo Clinic Proceedings. 2003;78(1):21-33

Orthoptic treatment and eye movement recordings in Guillain-Barré syndrome - a case report
Orthoptic therapy to improve oculomotor vergence control in a patient with acquired bilateral sixth nerve paralysis.
Neuro-ophthalmology— 1995, Vol. 15, No. 5, pp. 249-256 Management of chronic inflammatory demyelinating polyradiculoneuropathy
Review of current concepts concerning the nosological status, pathogenesis and management of CIDP.
Drugs 2003;63(3):275-87

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Foreign-language links

Anatomi, fysiologi, årsager og faktorer, der påvirker tarmfunktionen
".. Hvis sygeplejersker havde en bedre viden om årsagerne til obstipation, diaré og afføringsinkontinens, kunne de dels spare tid, dels forebygge smerter og ubehag hos patienterne...."
Gerd Johnsen. Sygeplejersken 5/2001.
Rigshospital: Sygepleje til patienter med Guillain-Barré
Vejledning til sygeplejersker.
Lægfolks opfattelser af lægers ord
Lægestuderende undersøgte lægfolks forståelse af udvalgte ord som bruges af læger i den tro, at de er dele af det almene sprog.
Forslag til forbedring af dialogen.
Min egen seniorpolitik: Om forbedringer i kroniske GBS'ere behandling på Rigshospitalet.
Seniorsygeplejersken på Neurologisk afd. har indført nye metoder til optimering af patienternes møde- og behandlingsplaner, som bl.a. har ført til besparelser og større patienttryghed.
"Den smilende Patient"

Om en sygeplejerskes overvejelser i forbindelse med pasning af en totallammet GBS-patient.
Polyradiculitis
En sygeplejerske skriver om patientpleje og - omsorg.
Fra passiv til aktiv kommunikation med IT
HIT, 1, 2002, s. 8-9
.
Joan Hjøllund måtte finde alternative veje til at kommunikere. Hun fik hjælp fra Center for Kommunikation, Ringkjøbing Amt til at finde de rigtige IT-løsninger.
Fødevarebårne infektioner
De forskellige sygdomsfremkaldende organismer og konsekvens for samfundet. Udforskningen af udbrud - store som små - er vigtig bl.a. for at finde kilden og evt. erhverve ny viden om kilder, og være bedre rustet til forebyggelse. I dagligdagen i den primære sundhedstjeneste og på sygehuse og institutioner bør man bidrage til dette ved at anmelde mistænkte tilfælde af fødemiddelinfektion til embedslægen og om muligt sikre en mikrobiologisk diagnose, da dette er en betingelse for at finde kilden.
Kåre Mølbak, Statens Serum Institut, afdeling for mave-tarm-infektioner og afdeling for epidemiologisk forskning.
GBS - Docent Björn Ryberg, Neurologkliniken/Lunds Universitetssjukhus

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