Leven met HSP

© 2017

Hoe het zover kwam

Geplaatst op 09-07-2013 10:33 door billynoor
Categorieën: Diagnose

December 2010; ik had mijn droombaan gevonden na een aantal jaren zoeken. Ik werkte bij een trombosedienst als allrounder. Dat wil zeggen dat ik bloed afnam bij cliënten en daarnaast op kantoor werkte. Fijne collega's, leuk werk waarbij je veel contact had met mensen, je leerde ze kennen doordat je ze regelmatig terug zag. Hele levensverhalen werden er bij het prikken verteld. Heel bijzonder dus.
Ik liep altijd al een beetje vreemd, maar rond deze tijd begonnen mijn collega's op te merken dat ik steeds slechter ging lopen. Ik weet het aan de sneeuw, ik heb altijd goed mijn kop in het zand kunnen steken.
5 januari ging het mis, rond 18.30. Mijn linkerbeen voelde zwaar aan en ik kon hem niet goed meekrijgen. Dat was al vaker gebeurt en dat gevoel trok altijd binnen een paar minuten weg. Ditmaal duurde het langer, de volgende ochtend was het nog niet weg.
Nu liep ik al jaren met vage klachten, had 10 jaar daarvoor al eens mezelf op filmbeelden gezien en uitgeroepen dat het er zo spastisch uit zag. Niet dat ik daar iets mee deed, het was gewoon een constatering. Er waren al eerder neurologische onderzoeken geweest en naast het uitsluiten van MS had het nooit wat gebracht. Ik had voor mezelf dus besloten dat het tussen mijn oren zat, dat ik me aanstelde. Ik zat daarom te dubben of ik nu wel of niet een afspraak moest maken met de huisarts. Het was toevallig mijn vrije dag, dus werken hoefde ik niet. Ik zat me af te vragen of ze er wel wat mee konden, het was weer zo vaag.
Toch maar even gebeld, voor advies. Ik kreeg een afspraak voor die ochtend.
Ik op de fiets naar de huisarts, ondanks de gladheid. Ik durfde de auto niet mee te nemen met een been wat niet goed werkte. Dat fietsen misschien ook niet zo slim was kwam niet in mij op.
Ik hoefde gelukkig nergens van de fiets af en bij de huisarts aangekomen in de wachtkamer gaan zitten. Toen ik geroepen werd kon ik amper meer opstaan en ben ik niet verder gekomen dan de eerste kamer, de assistentenkamer. De huisarts moest me daar al bij helpen, hij schrok er geloof ik van hoe slecht ik liep. Toen hij mijn reflexen testte schrok hij zichtbaar. Ik vond het zelf niet zo bijzonder dat mijn benen de lucht in vlogen, dat deden ze al jaren. Ik had 16 jaar daarvoor al gehoord dat ik erg levendige reflexen had tijdens de opleiding fysiotherapie. Ik was een geliefd proefpersoon ervoor. Maar dat het normaal was zolang het aan beide zijden gelijk was. Inmiddels weet ik dat het hyperreflexie is...
Hij heeft overlegd met de fysiotherapeut die ook in het gebouw gevestigd was en met het ziekenhuis. Eind van het liedje was dat ik naar het ziekenhuis moest en ik mocht niet met eigen vervoer. Ik wilde iemand bellen maar dat mocht niet, ik moest met de ambulance. Later hoorde ik dat ze dachten aan een ruggenmerginfarct of een tumor. Nooit aan gedacht, het zat immers tussen mijn oren...
Na MRI van het hoofd en rug, lumbaal punctie en een prednisolonkuur voor het geval het toch MS was werd het wederom uitgesloten. Het been werd iets beter en ik mocht naar huis. Wel een revalidatietraject (poliklinisch) van ca 3 maanden waarin we verdere verbetering haalden. Tot aan het einde, toen ging het toch weer langzaam aan minder. Ik werd ook doorgestuurd naar het Radboud waar na diverse bloedonderzoeken de waarschijnlijkheidsdiagnose HSP werd gesteld in november 2011. De 2 meest voorkomende DNA fouten werden uitgesloten en omdat ik geen familieleden met dezelfde symptomen heb kunnen ze het niet met zekerheid zeggen. Maar PLS is nog zeldzamer, dus HSP is waarschijnlijker.

Na jaren van sukkelen en vage klachten had ik dus eindelijk een diagnose. Vanaf mijn puberteit had ik al problemen, dus het heeft even geduurd. De diagnose werd uiteindelijk gesteld op mijn 37e.
Nog altijd is er twijfel, het is immers niet met een duidelijke objectieve test vastgesteld. Ik kan er niet meer omheen dat er iets aan de hand is, het is behoorlijk achteruit gegaan. Maar nog altijd bekruipt me soms de twijfel, zit het toch tussen de oren? Niet waarschijnlijk, nee, het is niet mogelijk. Maar om mezelf dat duidelijk te maken?


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Geplaatst op 23-09-2017 06:24 door jianbin0923


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