MS zorg vroeger: overzicht van de zorg rondom MS in de jaren 80

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1 MS zorg vroeger: overzicht van de zorg rondom MS in de jaren 80 Dr. P.J. Jongen, neuroloog MS4 Research Institute, Nijmegen Afd. Sociale geneeskunde UMCG, Groningen

2 MS zorg Dr. P.J. Jongen, neuroloog

3 Pigmaei gigantum humeris impositi plusquam ipsi gigantes vident, Wij zijn als dwergen, zittend op de schouders van reuzen, zodat wij meer en verder zien dan zij, niet zozeer door de scherpte van onze eigen blik of door de lengte van ons lichaam, maar omdat wij in de hoogte worden getild en verheven worden door de grootheid van de reuzen. Bernardus van Chartres 1150

4 Als ik verder heb gezien dan anderen, komt dat doordat ik op de schouders van reuzen stond Isaac Newton 1677

5 Overzicht van de MS zorg in de jaren 80 Diagnostiek Behandeling Begeleiding

6 Overzicht van de MS zorg in de jaren 80 Diagnostiek

7 Geen

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9 Poser criteria CDMS LSDMS CPMS Clinically definite MS. Needs two attacks and some clinical or paraclinical evidences Laboratory supported definite MS, with oligoclonal bands (OCBs) and clinical or paraclinical evidences Clinically probable MS, with less restrict combinations. No MS There is no clinical evidence of having MS.

10 Liquoronderzoek Geen standaardmethode om oligoclonale banden op te sporen Gevolg kon zijn dat diagnose LSDMS ten onrechte niet wordt gesteld Vanaf jaren 90 is iso-electrische focusering de standaardmethode Geen a-traumatische naalden: vaak hoofdpijn na prik

11 CT scan The British engineer Godfrey Hounsfield demonstrated the first CT scanner in For this invention, he received the Nobel Prize in medicine in 1979.

12 MRI scan Paul Lauterbur

13 Lancet Nov 14;2(8255): Nuclear magnetic resonance imaging of the brain in multiple sclerosis Young IR, Hall AS, Pallis CA, Legg NJ, Bydder GM, Steiner RE. Ten patients with multiple sclerosis (MS) were scanned by means of cranial X-ray computed tomography (CT) with and without intravenous contrast enhancement, and by nuclear magnetic resonance (NMR) using an inversion-recovery sequence. Altogether 19 lesions varying in size between about 7 mm X 5 mm and 13 mm X 8 mm were demonstrated by CT. They were all situated in the periventricular region. Two patients also showed moderate ventricular enlargement. In addition to these abnormalities 112 further lesions were demonstrated on the NMR scans. These lesions varied in size from 4 mm X 3 mm to 12 mm X 7 mm and were particularly well seen in the periventricular region and brainstem. Care is required in the assessment of NMR scans to exclude artefacts, background noise, and mottle as well as normally situated grey matter and partial volume effects from cerebral sulci. NMR nevertheless demonstrates abnormalities in MS on a scale not previously seen except at necropsy.

14 MRI Volume 319, Issue 8276, 10 April 1982, Pages 850 Letters to the Editor, Lancet NUCLEAR MAGNETIC RESONANCE IMAGING (NMR) AND COMPUTERISED TOMOGRAPHY (CT) IN MULTIPLE SCLEROSIS F.L. Mastaglia, L.A. Cala

15 CT versus MRI

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17 Overzicht van de MS zorg in de jaren 80 Behandeling

18 Behandeling Terugvallen: Ziektebeloop: Klachten: afwachten, niets doen, steroiden: kuur methylprednisolon geen behandeling soms immunosuprressie: methotrexaat, azathioprine, cyclofosfamide beperkt behandelbaar geen optimale preventie van complicaties

19 Clin Neurol Neurosurg. 1975;78(1): Treatment of the chronic progressive form of multiple sclerosis with a combination of cyclophosphamide and prednisone. Hommes OR, Prick JJ, Lamers KJ. 32 patients with the chronic progressive form of the multiple sclerosis were treated with high doses of cyclophosphamide and prednisone during 20 days, to produce immunosuppression. The effect of treatment was measured by scoring three different Kurtzke scales just before treatment (1), just after treatment (II), and 3 months after treatment (III). The results indicate that in the treatment period I to II most patients improve, some dramatically. The improvement continues in 15 of 25 patients scored between 6 and 33 months after treatment. Better results were found in patients with shorter duration of their disease. More improvement is found as the IgG percentage of the spinal fluid at I is higher. The improvement is less when the initial condition (I) is more serious.

20 Clin Neurol Neurosurg. 1975;78(1): Treatment of the chronic progressive form of multiple sclerosis with a combination of cyclophosphamide and prednisone. Hommes OR, Prick JJ, Lamers KJ. 32 patients with the chronic progressive form of the multiple sclerosis were treated with high doses of cyclophosphamide and prednisone during 20 days, to produce immunosuppression. The effect of treatment was measured by scoring three different Kurtzke scales just before treatment (1), just after treatment (II), and 3 months after treatment (III). The results indicate that in the treatment period I to II most patients improve, some dramatically. The improvement continues in 15 of 25 patients scored between 6 and 33 months after treatment. Better results were found in patients with shorter duration of their disease. More improvement is found as the IgG percentage of the spinal fluid at I is higher. The improvement is less when the initial condition (I) is more serious.

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22 Dr. J.F. Kurzke

23 EDSS score

24 MS zorg Neurology Nov;33(11): Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Kurtzke JF One method of evaluating the degree of neurologic impairment in MS has been the combination of grades (0 = normal to 5 or 6 = maximal impairment) within 8 Functional Systems (FS) and an overall Disability Status Scale (DSS) that had steps from 0 (normal) to 10 (death due to MS). A new Expanded Disability Status Scale (EDSS) is presented, with each of the former steps (1,2,3... 9) now divided into two (1.0, 1.5, ). The lower portion is obligatorily defined by Functional System grades. The FS are Pyramidal, Cerebellar, Brain Stem, Sensory, Bowel & Bladder, Visual, Cerebral, and Other; the Sensory and Bowel & Bladder Systems have been revised. Patterns of FS and relations of FS by type and grade to the DSS are demonstrated.

25 Overzicht van de MS zorg in de jaren 80 Begeleiding

26 Multiple sclerose NTVG C.W.M. Adams, J. de Graaf, J.H. van der Hoeven, M.C. Hoogstraten, J.M. Minderhoud en J. van Gijn C.W.M.Adams, A colour atlas of multiple sclerosis & other myelin disorders. 231 bl., fig., tabellen. Wolfe medical publications, Londen 1989 (voor Nederland: Medical Books Europe, Lochem). Prijs: geb. 55,-. Multiple sclerose. J.de Graaf, J.H.van der Hoeven, M.C.Hoogstraten en J.M. Minderhoud, Multiple sclerose. Een boek voor patiënt en behandelaar. 270 bl., fig., tabellen. Bohn, Scheltema & Holkema, Utrecht Prijs: ingen. ƒ 42,50.

27 Dr. P.J. Jongen, neuroloog

28 Begeleiding Lang niet altijd, meestal beperkt Adviezen m.b.t. leefstijl Meegeven folder van patiëntenvereniging Steeds meer patiënten gaan ziekenhuizen opzoeken met belangstelling voor MS (mond-op-mond-reclame, kranten, blad van patiëntenvereniging)

29 Leefstijl Adviezen, gevraagd en ongevraagd Rustig aan doen Grote inspanningen mijden Geen zwangerschap

30 Overzicht van de MS zorg in de jaren 80 Diagnostiek MRI Ruggenmergvocht ( bandjes ) Diagnose criteria Behandeling Steroïden (methyprednisolonkuur) Immunosuppressie Begeleiding Begin van informatie(centra) Patiëntenverenigingen

31 De REUZEN in de MS (zorg) in de jaren 80 MRI PAUL LAUTERBUR Ruggenmergvocht ( bandjes ) Diagnose criteria CHARLES POSER Steroïden (methylprednisolonkuur) Immunosuppressie Otto Hommes Meten van beperkingen JOHN KURTZKE Begin van informatie(centra) Jan Minderhoud Patiëntenverenigingen

32 Als ik verder heb gezien dan anderen, komt dat doordat ik op de schouders van reuzen stond MS Centrum Leeuwarden 2015

33 MS zorg Dr. P.J. Jongen, neuroloog