Yintoni iNkqubela phambili ePrayimari?

Umxholo

• Ezinye iintlobo zeMS
• Yintoni isibhengezo sePPMS?
• I-PPMS kunye ne-SPMS
• I-PPMS kunye neRRMS
• Zithini iimpawu ze-PPMS?
• Yintoni ebangela iPPMS?
• Ichongwa njani iPPMS?
• Iphathwa njani iPPMS?
• Loluphi utshintsho kwindlela yokuphila olunceda ngePPMS?
• Iinguqulelo zePPMS
• Inkxaso
• Imbonakalo
• Yise kude

I-Multiple sclerosis (MS) sisifo esingapheliyo sokuzimela komzimba esichaphazela i-optic nerves, intambo yomqolo kunye nengqondo.

Abantu abafunyaniswa ukuba bane-MS bahlala benamava ahluke kakhulu. Oku kuyinyani ngakumbi kwabo bafunyaniswe benesifo se-multiple sclerosis (PPMS) sokuqala, enye yeentlobo ezinqabileyo ze-MS.

I-PPMS luhlobo olwahlukileyo lweMS. Ayibandakanyi ukudumba okuninzi njengeefom ze-MS ezibuyela umva.

Iimpawu eziphambili ze-PPMS zibangelwa ngumonakalo wemithambo-luvo. Ezi mpawu zenzeka ngenxa yokuba imithambo-luvo ayikwazi ukuthumela nokufumana imiyalezo komnye nomnye ngokufanelekileyo.

Ukuba unayo i-PPMS, kukho iimeko ezininzi zokukhubazeka kokuhamba kunezinye iimpawu, xa kuthelekiswa nabantu abanezinye iintlobo ze-MS.

I-PPMS ayiqhelekanga kakhulu. Ichaphazela malunga neepesenti ezili-10 ukuya kwezi-15 zabo bafumene ukuba bane-MS. I-PPMS iqhubeka ukusuka kwixesha olibona ngalo iimpawu zakho zokuqala (eziphambili).

Ezinye iintlobo ze-MS zinexesha lokuphinda ubuye ngokukhawuleza kunye nokuxolelwa. Kodwa iimpawu ze-PPMS ziya zibonakala kancinci kodwa ngokuthe chu ekuhambeni kwexesha. Abantu abanePPMS banokubuyela umva.

I-PPMS ikwabangela ukuba umsebenzi we-neurological wehle ngokukhawuleza okukhulu kunezinye iintlobo ze-MS. Kodwa ubungqongqo be-PPMS kunye nokukhula kwayo ngokukhawuleza kuxhomekeke kwimeko nganye.

Abanye abantu banokuba ne-PPMS eqhubekayo eba nzima ngakumbi. Abanye banokuba namaxesha azinzileyo ngaphandle kokuvela kweempawu, okanye nangamaxesha okuphuculwa okuncinci.

Abantu ababekhe bafunyaniswa ukuba bane-MS (PRMS) ngoku abajongwa njengenkqubela phambili.

Ezinye iintlobo zeMS

Ezinye iintlobo ze-MS zezi:

• Isifo esizimele sodwa (CIS)
• Ukubuyela kwakhona kwi-MS (RRMS)
• Inkqubela phambili yesibini ye-MS (SPMS)

Ezi ntlobo, zikwabizwa ngokuba zifundo, zichazwa yindlela ezichaphazela ngayo umzimba wakho.

Uhlobo ngalunye luneendlela ezahlukeneyo zokunyanga ezininzi. Ubukrakra beempawu zabo kunye nembono yexesha elide ziya kwahluka.

I-CIS luhlobo olusandula kuchazwa lwe-MS. I-CIS yenzeka xa unexesha elinye leempawu ze-neurologic ezihlala ubuncinci iiyure ezingama-24.

Yintoni isibhengezo sePPMS?

Ukuxelwa kwangaphambili kwe-PPM kwahlukile kuye wonke umntu kwaye akucingeleki.

Iimpawu zinokubonakala ngokuhamba kwexesha, ngakumbi njengoko usiya ukhula kwaye uqala ukuphulukana nemisebenzi ethile kumalungu afana nesinyi sakho, amathumbu kunye nezitho zangasese ngenxa yobudala kunye ne-PPMS.

I-PPMS kunye ne-SPMS

Nantsi umahluko ophambili phakathi kwePPMS kunye ne-SPMS:

• I-SPMS ihlala iqala njengokuchongwa kwe-RRMS ethi ekugqibeleni ibe mandundu ngakumbi ekuhambeni kwexesha ngaphandle kokuxolelwa okanye ukuphucula iimpawu.
• I-SPMS ihlala isigaba sesibini sokuxilongwa kwe-MS, ngelixa i-RRMS sisifo sokuqala esichaphazelayo.

I-PPMS kunye neRRMS

Nantsi umahluko ophambili phakathi kwePPMS kunye neRRMS:

• I-RRMS lolona hlobo luqhelekileyo lwe-MS (malunga neepesenti ezingama-85 zokuxilongwa), ngelixa iPPMS yenye yezona zinqabileyo.
• I-RRMS iphindwe kabini kathathu njengesiqhelo kubantu basetyhini njengakumadoda.
• Iziqendu zeempawu ezintsha zixhaphake kakhulu kwi-RRMS kune-PPMS.
• Ngexesha lokuxolelwa kwi-RRMS, awunakuzibona naziphi na iimpawu, okanye unokuba neempawu nje ezimbalwa ezingenamandla kangako.
• Ngokwesiqhelo, ezinye izilonda zobuchopho ziyavela kwi-MRIs yengqondo ene-RRMS kune-PPMS ukuba ayinyangwa.
• I-RRMS ihlala ifunyaniswa kwangaphambili ebomini kune-PPMS, malunga ne-20s kunye ne-30s, ngokuchasene ne-40 kunye ne-50s ene-PPMS.

Zithini iimpawu ze-PPMS?

I-PPMS ichaphazela wonke umntu ngokwahlukileyo.

Iimpawu eziqhelekileyo ze-PPMS zibandakanya ubuthathaka emilenzeni yakho kwaye unengxaki yokuhamba. Ezi mpawu zihlala zibonakala ngaphezulu kweminyaka emi-2.

Ezinye iimpawu eziqhelekileyo zale meko zibandakanya:

• ukuqina kwemilenze
• iingxaki ngokulinganisela
• intlungu
• ubuthathaka nokudinwa
• ingxaki ngombono
• isinyi okanye ukungasebenzi kwamathumbu
• ukudakumba
• ukudinwa
• Ukuba ndindisholo kunye / okanye ukubetha kwiindawo ezahlukeneyo zomzimba

Yintoni ebangela iPPMS?

Isizathu ngqo se-PPMS, kunye ne-MS ngokubanzi, asaziwa.

Eyona ithiyori ixhaphakileyo kukuba i-MS iqala xa amajoni akho omzimba eqala ukuhlasela inkqubo ye-nervous system yakho. Oku kukhokelela ekuphulukaneni ne-myelin, ukhuselo olujikeleze imithambo-luvo kwinkqubo yakho yeemvakalelo.

Ngelixa oogqirha bengakholelwa ukuba iPPMS ingafunyanwa njengelifa, inokuba nenxalenye yemfuza. Abanye bakholelwa ukuba inokubangelwa yintsholongwane okanye ityhefu kwindalo esingathi xa idityaniswe nemfuza inokunyusa umngcipheko wokuba ne-MS.

Ichongwa njani iPPMS?

Sebenza ngokusondeleyo kunye nogqirha wakho ukunceda ukufumanisa ukuba zeziphi iintlobo ezine ze-MS onokuba nazo.

Uhlobo ngalunye lwe-MS lunombono owahlukileyo kunye neemfuno zonyango ezahlukeneyo. Akukho vavanyo oluthile lubonelela ngoxilongo lwe-PPMS.

Oogqirha bahlala befumana ubunzima ekuchongeni i-PPMS xa kuthelekiswa nezinye iintlobo ze-MS kunye nezinye iimeko eziqhubela phambili.

Kungenxa yokuba umba wemithambo-luvo kufuneka uqhubekeke iminyaka eyi-1 okanye yesi-2 ukuze umntu afumane isifo esiqinisekileyo se-PPMS.

Ezinye iimeko ezineempawu ezifanayo ne-PPMS zibandakanya:

• yimeko yelifa ebangela ukuqina, imilenze ebuthathaka
• ukuswela i-vitamin B-12 ebangela iimpawu ezifanayo
• Isifo seLyme
• usulelo lwentsholongwane, njengohlobo lomntu lwe-T-cell leukemia type 1 (HTLV-1)
• Iifomathambo, ezinje nge-spinal arthritis
• ithumba elikufutshane nethambo lomqolo

Ukufumanisa i-PPMS, ugqirha wakho unakho:

• vavanya iimpawu zakho
• uphonononge imbali yakho yemithambo-luvo
• yenza uvavanyo lomzimba olujolise kwimisipha yakho kunye nemithambo luvo
• yenza iskena se-MRI sobuchopho bakho kunye nentambo yomqolo
• yenza i-lumbar puncture ukujonga iimpawu ze-MS kulwelo lomqolo
• yenza iimvavanyo ezinokubakho (EP) zokuchonga uhlobo oluthile lwe-MS; Uvavanyo lwe-EP lukhuthaza iindlela zemithambo-luvo ukumisela umsebenzi wombane wobuchopho

Iphathwa njani iPPMS?

I-Ocrelizumab (Ocrevus) kuphela kwesiyobisi esivunyiweyo yi-Food and Drug Administration (FDA) ukunyanga i-PPMS. Inceda ukunciphisa ukonakala kwentliziyo.

Amanye amayeza aphatha iimpawu ezithile ze-PPMS, ezinje:

• ukuqina kwemisipha
• intlungu
• ukudinwa
• iingxaki zesinyi kunye nezibilini.

Zininzi iindlela zonyango eziguqula izifo (i-DMTs) kunye nee-steroids ezivunyiweyo yi-FDA yokuphinda ubuye kwiifom ze-MS.

Ezi DMTs azinyangi ngokuthe ngqo kwi-PPMS.

Unyango olutsha luphuhliswa i-PPMS ukunceda ukunciphisa ukudumba okuhlasela ngokukhethekileyo imithambo-luvo yakho.

Ezinye zazo zikwanceda ukujongana nomonakalo kunye neenkqubo zokulungisa ezichaphazela imithambo-luvo yakho. Olu nyango lunokwazi ukunceda ukubuyisela i-myelin ejikeleze imithambo-luvo yakho eyonakaliswe yi-PPMS.

Olunye unyango, ibudilast, belusetyenziswe eJapan ngaphezulu kweminyaka engama-20 ukunyanga isifuba kwaye kunokuba nakho ukunyanga ukuvuvukala kwi-PPMS.

Olunye unyango olubizwa ngokuba yi-masitinib lusetyenziselwe ukwaliwa kukujolisa kwiiseli zemast ezibandakanyekayo kwi-allergies kwaye zibonisa isithembiso njengonyango lwe-PPMS, nayo.

Kubalulekile ukuba uqaphele ukuba ezi ndlela zonyango zisekuqala kakhulu kuphuhliso nakuphando.

Loluphi utshintsho kwindlela yokuphila olunceda ngePPMS?

Abantu abane-PPMS banokunciphisa iimpawu ngokuzivocavoca umzimba kunye nokuzolula ukuya:

• hlala uhambile kangangoko
• Nciphisa ubunzima obufumanayo
• konyusa amanqanaba amandla

Nazi ezinye izinto onokuzenza ukulawula iimpawu zakho ze-PPMS kunye nokugcina umgangatho wobomi:

• Yitya ukutya okusempilweni nokunesondlo.
• Hlala kwishedyuli yokulala rhoqo.
• Yiya kunyango lomzimba okanye lomsebenzi, onokukufundisa ngeendlela zokunyusa ukuhamba kunye nokulawula iimpawu.

Iinguqulelo zePPMS

Iinguqulelo ezine zisetyenziselwa ukubonisa uphawu lwePPMS ekuhambeni kwexesha:

• Iyasebenza ngokuqhubela phambili: I-PPMS eneempawu eziba mandundu kunye nokuphinda ubuye okanye nomsebenzi omtsha we-MRI; ukwanda kokukhubazeka kuya kubakho
• Iyasebenza ngaphandle kokuqhubela phambili: I-PPMS iphinda ibuye okanye umsebenzi we-MRI, kodwa akukho kukhubazeka kukhulayo
• Ayisebenzi ngokuqhubela phambili: I-PPMS ngaphandle kokuphinda ubuye okanye umsebenzi we-MRI, kodwa ngokukhula kokukhubazeka
• Ayisebenzi ngaphandle kokuqhubela phambili: I-PPMS ngaphandle kokuphinda ubuye, umsebenzi we-MRI, okanye ukwanda kokukhubazeka

Uphawu oluphambili lwe-PPMS kukusilela koxolelo.

Nokuba umntu one-PPMS uyazibona iimpawu zakhe zisetafileni-oko kuthetha ukuba abanamava okuba mandundu kwesifo okanye ukwanda kokukhubazeka- iimpawu zabo aziphucuki. Ngale fomu ye-MS, abantu abaphindi baphinde bafumane imisebenzi ekusenokwenzeka ukuba baphulukene nayo.

Inkxaso

Ukuba uhlala ne-PPMS, kubalulekile ukufumana imithombo yenkxaso. Kukho iindlela zokufumana inkxaso kumntu ngamnye okanye kuluntu olubanzi lweMS.

Ukuphila nesifo esinganyangekiyo kunokuthatha umthwalo. Ukuba ufumana iimvakalelo eziqhubekayo zosizi, umsindo, usizi, okanye ezinye iimvakalelo ezinzima, mxelele ugqirha wakho. Banokukuthumela kwingcali yezempilo yengqondo enokunceda.

Unokujonga kwakhona ingcali yezempilo yengqondo ngokwakho. Umzekelo, iAmerican Psychological Association inikezela ngesixhobo sokukhangela ekufumaneni iingcali zeengqondo kulo lonke elaseMelika. I-MentalHealth.gov ikwabonelela ngomnxeba woncedo wokudlulisela unyango.

Unokukufumanisa kuluncedo ukuthetha nabanye abantu abaphila ne-MS. Cinga ukujonga kumaqela enkxaso, kwi-Intanethi okanye ngaphakathi-komntu.

I-National Multiple Sclerosis Society inikezela ngenkonzo yokukunceda ufumane amaqela enkxaso kwingingqi yakho. Kananjalo banenkqubo yoxhumano lwontanga eqhutywa ngamavolontiya aqeqeshiweyo ahlala ne-MS.

Imbonakalo

Ngena nogqirha wakho rhoqo ukuba unayo iPPMS, nokuba khange ube nazimpawu okwethutyana kwaye ngakumbi xa unokuphazamiseka okubonakalayo ebomini bakho ngesiqendu seempawu.

Kuyenzeka ukuba ube nobomi obuphezulu obuphezulu kunye ne-PPMS ukuba nje usebenza nogqirha wakho ukufumana ezona ndlela zonyango zilungileyo kunye nendlela yokuphila kunye notshintsho kwindlela yokutya ekusebenzela.

Yise kude

Akukho lunyango lwe-PPMS, kodwa unyango lwenza umahluko. Nangona imeko iqhubeka, abantu banokufumana amaxesha exesha apho iimpawu azibi mandundu.

Ukuba uhlala ne-PPMS, ugqirha wakho uya kuncoma isicwangciso sonyango ngokusekelwe kwiimpawu zakho kunye nempilo jikelele.

Ukuphuhlisa imikhwa yokuphila esempilweni kunye nokuhlala uqhagamshelene kwimithombo yenkxaso kunokukunceda ugcine umgangatho wobomi kunye nokuba sempilweni ngokupheleleyo.