Kodi PPMS (Primary Progressive Multiple Sclerosis) ndi chiyani? Tiyeni tikambirane mwachidule!

Mwina munamvapo za matenda otchedwa ` Multiple Sclerosis (MS)`. PPMS (Primary Progressive Multiple Sclerosis) ndi mtundu winawake wa MS. Pankhaniyi, zizindikiro zanu sizibwera mwadzidzidzi, zimachepa patatha masiku angapo, kenako zimabwereranso mobwerezabwereza. M'malo mwake, zizindikiro zanu pang'onopang'ono, pang'onopang'ono, ndipo pang'onopang'ono zimawonjezeka pakapita nthawi . Monga kukwera masitepe, zizindikirozi zimakula pang'onopang'ono. Musadandaule, izi zingamveke zovuta pang'ono. Tiyeni tikambirane zonse momveka bwino komanso mosavuta, chabwino?

Kodi PPMS ndi chiyani kwenikweni?

Mwachidule, `Multiple Sclerosis (MS)` ndi matenda omwe chitetezo chathu chamthupi, chomwe chimatiteteza ku matenda, chimaukira molakwika dongosolo lathu la mitsempha (`central nervous system`) - ubongo ndi msana (mitsempha yomwe ili mkati mwa msana). Izi zimawononga chophimba choteteza (myelin) chozungulira ulusi wa mitsempha.

Pakadali pano, pali mitundu ingapo ya MS.

• Kubwereranso kwa MS (RRMS): Anthu ambiri ali ndi mtundu uwu. Mu mtundu uwu, zizindikiro zimakula mwadzidzidzi (timatcha izi kuti 'kubwereranso'), kenako pakapita nthawi, zizindikirozo zimatha kwathunthu kapena kutha kwathunthu.
• Matenda a Primary Progressive MS (PPMS): Mu PPMS, mtundu womwe tikukamba lero, pali 'kubwereranso' kochepa komveka bwino monga momwe zilili mu RRMS. M'malo mwake, zizindikiro zimakula pang'onopang'ono kuyambira pachiyambi. Nthawi zina pangakhale 'kusintha' pang'ono, zomwe zikutanthauza kuti zizindikiro zimakula pang'onopang'ono. Koma ponseponse, vutoli limayamba kukulirakulira pang'onopang'ono.
• Secondary Progressive MS (SPMS): Anthu ena omwe ali ndi RRMS amatha kukhala ndi matendawa kukhala SPMS patatha zaka zingapo. Zizindikiro zawo zimakula pang'onopang'ono ndipo kubwereranso m'mbuyo kumakhala kochepa.

Nthawi zina PPMS ndi SPMS zimatchedwa `Progressive MS` chifukwa zonse zimakhala ndi chibadwa chopita patsogolo. Mu PPMS, pali kutupa pang'ono mu dongosolo la mitsempha, ndipo maselo a mitsempha amawonongeka ndipo pang'onopang'ono amataya ntchito yawo. Ichi ndi chomwe timachitcha `neurodegeneration`.

Kodi PPMS ndi yofala bwanji?

Pali anthu mamiliyoni ambiri omwe ali ndi MS padziko lonse lapansi. Akuti pali anthu pafupifupi miliyoni imodzi omwe ali ndi MS ku United States kokha. Pafupifupi 10% ya iwo, kapena pafupifupi munthu m'modzi mwa khumi, ali ndi mtundu uwu wa MS wotchedwa PPMS. Chifukwa chake, PPMS si yofala kwambiri poyerekeza ndi mitundu ina ya MS.

Kodi zizindikiro za PPMS ndi ziti? Kodi zimamveka bwanji?

Khalidwe lalikulu la PPMS ndilakuti zizindikiro za MS zimakula pang'onopang'ono.Zizindikirozi zimatha kusiyana malinga ndi munthu ndi munthu. Komanso, momwe zizindikirozo zimayambira komanso momwe zimakulira zimasiyana malinga ndi munthu ndi munthu.

Nazi zina mwa zizindikiro zodziwika bwino:

• Kuvutika kuyenda: Ichi ndi chizindikiro choyamba chomwe chimakhudza odwala ambiri a PPMS. Angavutike miyendo, kufooka, komanso kulephera kuyenda bwino. Angamvenso kutopa msanga akamayenda.
• Kumva kuwawa kapena dzanzi m'mbali zosiyanasiyana za thupi: Izi zitha kuchitika m'manja, mapazi, nkhope, kapena kwina kulikonse pathupi.
• Kusintha kwa masomphenya: Kuwona molakwika m'diso limodzi, kuwona kawiri, kapena kupweteka mukasuntha maso kungachitike. Komabe, mavuto awa a masomphenya sachitika kawirikawiri mu PPMS kuposa mu RRMS.
• Kumva kutopa nthawi zonse (`kutopa`): Uku si kutopa kwachibadwa. Mungamve ngati simukupeza bwino ngakhale mutapuma motani. Izi zitha kukhala chopinga chachikulu pa zochita zanu za tsiku ndi tsiku.
• Kuvuta kukodza ndi kuchita chimbudzi: Izi zitha kuphatikizapo kulakalaka kukodza mwadzidzidzi (`urgency`), kuvutika kulamulira kukodza (`incontinence`), komanso kuvutika kutulutsa madzi m'chikhodzodzo chonse. Kudzimbidwa nakonso n'kofala.
• Kumva ngati wina akukugwirani mwamphamvu pachifuwa kapena m'mimba: Anthu ena amatchanso izi kuti 'MS hug'.
• Kumva ngati magetsi akugunda kumbuyo, m'manja, kapena m'miyendo khosi likawerama patsogolo: Izi zimatchedwa 'chizindikiro cha Lhermitte'.
• Kuuma kwa minofu (kupindika) kapena kufooka: Izi zingapangitse kuti zikhale zovuta kuyendetsa ndi kusuntha miyendo yanu.
• Mavuto olankhula: Mungamve ngati mawu anu akumveka molakwika kapena liwiro lanu lolankhula likusintha.
• Mavuto a kumeza.
• Mavuto oganiza ndi kukumbukira: Kumva ngati ubongo wanu uli ndi chifunga ('ubongo wa chifunga'), zomwe zikutanthauza kuti zimakhala zovuta kukumbukira zinthu, kuyang'ana kwambiri, komanso kupanga zisankho.
• Mavuto a m'maganizo: Kuvutika maganizo , nkhawa , ndi kukwiya kungachitike.

Chofunika kwambiri ndichakuti zizindikirozi sizingawonekere bwino poyamba. Mungaganize kuti, “O, ndi kutopa chabe.” Koma ngati pang'onopang'ono zikukulirakulira pakapita nthawi, muyenera kuda nkhawa.

N’chifukwa chiyani PPMS imayamba? Kodi chifukwa chake n’chiyani?

Asayansi sakudziwabe chomwe chimayambitsa MS (kuphatikizapo PPMS), koma pali zinthu zingapo zomwe zikuganiziridwa kuti zimayambitsa izi:

1. Kutengera Matenda a Chibadwa: Akuganiza kuti kusintha kwina m'majini athu (DNA) kungatipangitse kukhala ndi matenda odziteteza ku matenda monga MS (matenda omwe chitetezo cha mthupi chimaukira thupi). Komabe, izi sizikutanthauza kuti ngati muli ndi MS, ana anu nawonso adzadwala matendawa. Mphamvu ya majini pa MS si yayikulu monga momwe mungaganizire. Chifukwa chake, chiopsezo chofalitsa matendawa kwa ana ndi chochepa.

2. Zinthu Zachilengedwe: Kafukufuku wina akusonyeza kuti zinthu zina zomwe zili m'malo omwe timakhala zingathandize pakukula kwa matenda a MS. Mwachitsanzo:

• Matenda a mavairasi : Matenda ena a mavairasi, monga Epstein- Barr Virus (EBV), akufufuzidwanso kuti apeze mgwirizano pakati pa MS ndi mitundu ina ya matenda.
• Kusowa kwa Vitamini D : Palinso chikhulupiriro chakuti anthu omwe ali ndi vitamini D yochepa kuchokera ku dzuwa ali pachiwopsezo chachikulu chotenga matenda a MS.
• Kusuta: Anthu omwe amasuta ali pachiwopsezo chachikulu chotenga matenda a MS ndipo amatha kupitirira msanga matendawa.

3. Kugwira ntchito kwa chitetezo chamthupi: Mwanjira ina, majini ndi zinthu zachilengedwe izi zimaphatikizana kuti zipange cholakwika ndi chitetezo chamthupi. Ichi ndichifukwa chake chimayamba kuukira dongosolo lathu la mitsempha.

Mwachidule, PPMS si matenda omwe amayamba chifukwa cha chinthu chimodzi chokha. Amayamba chifukwa cha zinthu zambiri zosiyanasiyana.

Ndi mavuto ena ati omwe angachitike chifukwa cha PPMS?

Pamene zizindikiro za PPMS zikupitirira, mavuto ena ndi zovuta zingabuke. Zitsanzo zina ndi izi:

• Kuuma kwa minofu (kupindika): Izi zingayambitse kupweteka kwambiri komanso kuvutika kuyenda.
• Chiwopsezo cha kutayika kwathunthu kwa masomphenya (chosowa).
• Kuvuta kolamulira chikhodzodzo: Izi zingayambitse matenda opatsirana m'mitsempha ya mkodzo pafupipafupi.
• Kuwonjezeka kwa vuto la kugonana.
• Kuchepa kwambiri kwa kukumbukira ndi luso loganiza.
• Mavuto amisala: Matenda monga kuvutika maganizo ndi nkhawa zingaipe kwambiri.
• Kugwa pafupipafupi ndi kuvulala komwe kumachitika chifukwa cha zimenezi monga kusweka kwa mafupa.
• Zilonda zopanikizika zomwe zimachitika chifukwa chokhala nthawi yayitali pabedi.
• Kuopsa kwa matenda opatsirana m'mapapo: Makamaka ngati matendawa ndi aakulu.

Kodi PPMS imapezeka bwanji? (Kuzindikira)

Palibe mayeso amodzi omwe angathandize kuzindikira PPMS. Dokotala wanu adzaganizira zizindikiro zanu, mbiri yanu yachipatala, mayeso akuthupi, ndi mayeso ena apadera, kenako n’kufika pa mfundo yakuti “izi zikhoza kukhala PPMS.”

Nazi zina mwa mayeso omwe amachitidwa kawirikawiri pa izi:

1. MRI (Magnetic Resonance Imaging): Iyi ndi njira yayikulu yoyesera matenda a MS. Imatha kuwona kuwonongeka (zilonda) muubongo ndi msana zomwe zimayambitsidwa ndi MS. Mu PPMS, mawonekedwe a zilondazi ndi momwe zimasinthira pakapita nthawi ndizofunikira.

2. Lumbar Puncture (yomwe imadziwikanso kuti Spinal Tap): Izi zimaphatikizapo kutenga chitsanzo chaching'ono cha cerebrospinal fluid (CSF) kuchokera pansi pa msana wanu. Madzi awa amawunikidwa kuti awone ngati pali kusintha kulikonse komwe kulipo pa MS, monga mapuloteni otchedwa oligoclonal bands. Izi sizili za MS, koma zitha kukhala chizindikiro cha kutupa muubongo kapena msana.

3. Kuyezetsa magazi: Izi zimathandiza kuonetsetsa kuti mulibe matenda ena omwe amayambitsa zizindikiro zofanana ndi za MS.

4. Maphunziro Omwe Amachititsa Kuti Zizindikiro Ziziyenda: Izi zimayesa liwiro limene zizindikiro zamagetsi zimadutsa m'dongosolo la mitsempha. Pamene mitsempha yawonongeka ndi MS, liwiro limene zizindikiro zimenezi zimayendera limatha kuchepetsedwa.

5. Optical Coherence Tomography (OCT): Iyi ndi njira yowunikira maso yopanda ululu yomwe ingathe kuwona kuwonongeka kwa mitsempha ya maso ndi retina kumbuyo kwa diso chifukwa cha MS.

Kuti adziwe matenda a PPMS, madokotala amaganizira za kuipiraipira pang'onopang'ono kwa zizindikiro kwa chaka chimodzi kapena kuposerapo komanso kupezeka kwa zizindikiro zinazake pa MRI scan .

Kodi PPMS nthawi zambiri imachitika pa msinkhu wanji?

Anthu ambiri amapezeka ndi PPMS ali ndi zaka za m'ma 40 kapena 50. Uwu ndi msinkhu wochedwa pang'ono kuposa RRMS. Komabe, ukhoza kuchitika pa msinkhu uliwonse, kwa achinyamata ndi achikulire.

Kodi mankhwala a PPMS ndi ati?

Pali zolinga ziwiri zazikulu pochiza PPMS:

1. Mankhwala Osintha Matenda (DMTs): Mankhwalawa amayesetsa kuchepetsa kuchuluka kwa matendawa.

2. Kusamalira Zizindikiro: Izi zimathandiza kuchepetsa kusasangalala kwanu ndikukweza moyo wanu.

Mankhwala Osinthira Matenda (DMTs)

Pali mitundu ingapo ya ma DMT omwe amapezeka pa RRMS, koma pali ma DMT ochepa okha omwe amavomerezedwa pa PPMS.

• Ocrelizumab (Ocrevus®):Iyi ndi DMT yayikulu yomwe yavomerezedwa pakali pano kuti igwiritsidwe ntchito pa PPMS. Ndi mankhwala operekedwa kudzera m'mitsempha. Kafukufuku wasonyeza kuti mankhwalawa angathandize pang'ono kuchepetsa kuipiraipira kwa zizindikiro mwa odwala a PPMS.

Madokotala amakhulupirira kuti PPMS sichitha kukhudzidwa kwambiri ndi kutupa kwa chitetezo chamthupi kuposa RRMS, ndichifukwa chake ma DMT omwe amalimbana ndi kutupa sagwira ntchito bwino. Komabe, pali kafukufuku wambiri wokhudza MS, kotero pakhoza kukhala mankhwala ambiri a PPMS mtsogolomu.

Kulamulira zizindikiro

Ichi ndi gawo lofunika kwambiri pochiza PPMS. Chithandizochi chimadalira zizindikiro zanu.

• Kuchiza ndi Thupi: Izi zitha kukhala zothandiza kwambiri pazinthu monga kuyenda movutikira, kuuma kwa minofu, komanso kufooka. Kuchita masewera olimbitsa thupi ndi kutambasula thupi kungathandize kulimbitsa mphamvu, kulinganiza bwino thupi, komanso kuyenda bwino.
• Chithandizo cha Ntchito: Chimayambitsa njira ndi zida zothandizira anthu kuchita ntchito za tsiku ndi tsiku (monga kuvala, kudya, kulemba) paokha.
• Mankhwala:
• Mankhwala ochiritsira kuuma kwa minofu (spasticity).
• Mankhwala oletsa kutopa.
• Mankhwala a mavuto a chikhodzodzo.
• Mankhwala opweteka.
• Mankhwala ochizira kuvutika maganizo kapena nkhawa.
• Chithandizo cha Kulankhula: Ngati mukuvutika kulankhula kapena kumeza.
• Zothandizira pa Kuyenda: Mungafunike zinthu monga ndodo, choyendera, kapena mpando wa olumala.

Dokotala wanu adzakufotokozerani zotsatirapo zake za mankhwala kapena chithandizo chilichonse musanayambe kumwa, choncho musaope kufunsa mafunso aliwonse omwe muli nawo.

Kodi pali njira yopewera PPMS?

Mwatsoka, palibe njira yopewera MS (kuphatikizapo PPMS) chifukwa chomwe chimayambitsa matendawa sichikudziwikabe.

Komabe, ngati muli ndi MS, pali zinthu zina zomwe mungachite kuti muchepetse kuchuluka kwa kuphulika kwa matenda (`kubwereranso m'mbuyo' - ngakhale izi sizichitika kawirikawiri mu PPMS) ndikulamulira kuchuluka kwa matendawa:

• Kumwa mankhwala olembedwa ndi dokotala (makamaka DMTs) monga momwe dokotala wanenera.
• Kutsatira moyo wathanzi (kudya bwino, kugona bwino, kuchita masewera olimbitsa thupi).
• Pewani kusuta fodya kotheratu.
• Kuyesetsa kuchepetsa nkhawa momwe mungathere.

Kodi munthu amene ali ndi PPMS amakumana ndi zokumana nazo zotani?

PPMS ndi matenda osatha omwe angakhudze kwambiri moyo wanu watsiku ndi tsiku. Pamene zizindikiro zikuipiraipira, mungafunike kusintha zina ndi zina pa moyo wanu kuti mudziteteze ndikupewa ngozi.

Tangoganizirani, ngati mukuvutika kuyenda nokha, muyenera kulankhula ndi dokotala wanu za chipangizo choyendera monga mpando wa olumala. Zinthu ngati izi zingakhale zovuta kuzivomereza poyamba. Koma,Zipangizozi zidzakuthandizani kugwira ntchito nokha komanso kukhala ndi moyo wotanganidwa.

Kuwonjezera pa zotsatira za PPMS, kukhala ndi matenda osatha amenewa kungakukhudzeninso kwambiri thanzi lanu la maganizo. N’zachilendo kumva chisoni, mkwiyo, kusowa chiyembekezo komanso kusungulumwa. Anthu ena amapeza mpumulo waukulu akamalankhula ndi katswiri wa zamaganizo , monga mlangizi kapena katswiri wa zamaganizo. Choncho, ngati mukuona kuti mukufunikira thandizo, musazengereze kupempha thandizo.

Kumbukirani, palibe mankhwala a PPMS pakadali pano. Komabe, kafukufuku akupitilira kuti aphunzire zambiri za izi ndikupeza njira zatsopano zomwe zingakupatseni mpumulo. Choncho musataye mtima.

Kodi zizindikiro za PPMS zimakula mofulumira bwanji?

Funso limene anthu ambiri amafunsa ndi ili. Komabe, aliyense amene ali ndi PPMS amakumana nalo mosiyana. Kwa anthu ena, zizindikiro zimatha kuipiraipira pang'onopang'ono, pakapita zaka zambiri. Kwa ena, zizindikiro zimatha kuipiraipira mofulumira.

Izi n'zovuta kuneneratu molondola. Ngati muwona kusintha kulikonse koonekeratu kwa zizindikiro zanu, kapena ngati zikuipiraipira mofulumira, onetsetsani kuti mwalankhula ndi dokotala wanu nthawi yomweyo.

Kodi munthu amene ali ndi PPMS amakhala ndi moyo wautali bwanji?

Ichinso ndi chinthu chomwe anthu ambiri amachiopa. Komabe, PPMS siimakhudza mwachindunji moyo wanu. Izi zikutanthauza kuti, kukhala ndi PPMS sikutanthauza kuti moyo wa munthu ndi waufupi kuposa wa ena.

Komabe, mavuto aakulu a matendawa (monga matenda oopsa, mavuto omwe amayamba chifukwa chogona nthawi yayitali) akhoza kukhala ndi zotsatira zoopsa ngati sakuthandizidwa bwino. Chifukwa chake, ndikofunikira kwambiri kutsatira malangizo a dokotala ndikusamalira thanzi lanu.

Kodi ndiyenera kupita kwa dokotala liti?

Ngati muli ndi PPMS, ndikofunikira kuti mupite kukayezetsa dokotala nthawi zonse. Kuphatikiza apo, pitani kwa dokotala ngati:

• Ngati zizindikiro za PPMS zikuipiraipira ndipo zikukhudza moyo wanu watsiku ndi tsiku.
• Ngati pali mavuto atsopano, mavuto aakulu monga kufooka kwa ziwalo amabuka.
• Ngati muli ndi ululu wosatha kapena dzanzi m'miyendo yanu, kapena ngati ukuwonjezeka.
• Popeza PPMS ingakhudze kulinganiza bwino kwa thupi lanu ndi kugwirizana kwanu, ngati mutagwa ndikudzivulaza, pitani kwa dokotala nthawi yomweyo kapena imbani ogwira ntchito zadzidzidzi.
• Ngati mankhwala omwe mukumwa amayambitsa zotsatirapo zoyipa .
• Ngati mukumva kudwala matenda amisala (monga kuvutika maganizo, nkhawa).

Ndi mafunso ati omwe ndiyenera kufunsa dokotala?

Mukapita kukaonana ndi dokotala, ndi bwino kulemba mafunso omwe muli nawo. Nazi zitsanzo zina:

• Kodi ndili ndi PPMS, kapena mtundu wina wa MS? Ndingadziwe bwanji motsimikiza?
• Kodi ndingathe bwanji kuthana ndi zizindikiro zanga? Ndi zinthu ziti zenizeni zomwe ndingachite?
• Kodi mungandipangire chithandizo cha physiotherapy kapena chithandizo cha ntchito? Kodi ndingapeze kuti chithandizo chimenecho?
• Kodi ndi mankhwala ati omwe mukundilangiza? Kodi zotsatira zake ndi ziti? Ndiyenera kumwa nthawi yayitali bwanji?
• Kodi ndiyenera kugwiritsa ntchito njinga ya olumala kapena chipangizo china choyendera? Ngati ndi choncho, kwa nthawi yayitali bwanji?
• Kodi ndiyenera kusintha zakudya zanga?
• Kodi ndiyenera kuchita chiyani kuti ndisamalire thanzi langa la maganizo?

Uthenga Womaliza Wopita Nawo Kunyumba

PPMS, monga mitundu ina ya Multiple Sclerosis, ndi matenda omwe angakhudze kwambiri moyo wanu. Ndi zoona. Koma musadandaule, simuli nokha.

Kumbukirani kuti pali njira zochiritsira ndi njira zomwe zingathandize kuchepetsa kupitirira kwa zizindikiro zanu ndikukweza moyo wanu.

Poyamba, simungazindikire zizindikiro zambiri, koma pakapita nthawi, zimatha kuwonjezeka. Mungafunike kugwiritsa ntchito zida monga njinga ya olumala kuti zikuthandizeni kuyenda nokha. Si mapeto a dziko. Dokotala wanu, katswiri wa zamaganizo, ndi ena othandizira zaumoyo angakuthandizeni panjira. Angakuthandizeni kuthana ndi zizindikiro zanu ndikukutsogolerani kuti mukhale ndi moyo wathanzi komanso wokangalika momwe mungathere.

Choncho, khalani ndi chiyembekezo. Dziwani zambiri. Funsani mafunso. Pezani thandizo lomwe mukufuna. Lankhulani ndi achibale anu ndi anzanu za izi. Thandizo lawo lidzakhalanso mphamvu yayikulu kwa inu.