He uaua ki a koe te hikoi i ētahi wā, he ngoikore ō waewae, he ngenge tonu rānei, kāore he take? Kei te whakaaro anō hoki koe kāore ēnei tohu e tīmata ohorere, engari ka piki haere i roto i te wā? He mea nui kia mōhio koe ki tēnei āhuatanga e kiia nei ko te PPMS e kōrerohia nei e tātou i tēnei rā. Ahakoa he kaupapa uaua tēnei, ka kōrerohia e tātou he tino māmā noa iho, i roto i te huarahi e mārama ai koe.
He aha te PPMS?
Āe, me titiro tuatahi tātou he aha te PPMS. Ko te kupu PPMS he tohu mō te 'Primary Progressive Multiple Sclerosis '. He momo mate tēnei e kīia nei ko te 'Multiple Sclerosis' ( MS ).
I te whakarapopototanga, ko te Multiple Sclerosis (MS) he āhuatanga e whakaeke hē ai te pūnaha ārai mate o tō tātou tinana, te pūnaha e tiaki ana i a tātou i te mate, i tō tātou ake pūnaha io. Ka whakararuraru tēnei i te rere o ngā mōhiohio i waenga i te roro, te taurakira, me te toenga o te tinana.
E rua ngā momo matua o te MS ināianei.
1. MS Whakahoki-Whakahoki (RRMS): Koinei te wā ka kino haere ngā tohu (e kiia ana tēnei he 'whakahoki'), kātahi ka pai ake ngā tohu, ka ngaro katoa rānei ('whakakorenga'). He rite ki te ua, ka puta whakarere mai, ka taka iho, kātahi ka hoki mai anō.
2. MS Whakamua Ake (PPMS): He rerekē te momo e kōrerohia ana e tātou i tēnei rā, arā, te PPMS. I konei, kāore ngā tohu e puta ohorere mai, kātahi ka memeha haere. Engari, ka kino haere ngā tohu i roto i te wā. Pērā i te ua, ka mākū haere, kātahi ka tino mākū. I ētahi wā, ka puta ake ngā tohu, engari he onge tēnā.
Tata ki te 10% o ngā tūroro MS kei a rātou tēnei momo MS, e kiia nei ko te PPMS.
He aha ngā tohu matua o te PPMS?
I roto i te PPMS, kāore pea ngā tohu e tino kitea i te tīmatanga. Engari i roto i te wā, ka kaha haere. Ka rerekē pea ēnei tohu i ia tangata, i ia tangata. Me titiro tātou ki ngā tohu matua ka pā ki a koe.
| Tohu | He whakamārama māmā |
|---|---|
| Te uaua ki te hikoi | Koinei te tohu tino kitea o te PPMS. Tērā pea ka uaua te hikoi nā te ngoikore, te pakari, te ngaro rānei o te taurite o ngā waewae. |
| Ngenge auau | Te tino ngenge, ahakoa te moe pai me te kore mahi. He nui atu tēnei i te ngenge noa. |
| Te ngoikore, te ngaro rānei o te kare ā-roto o ngā peka | Tērā pea ka rongo koe i te ngoikore, te ngenge, te ngaro rānei o te rongo i ētahi wāhanga o tō tinana, inā koa ō ringaringa me ō waewae. |
| Ngā huringa tirohanga | Tērā pea ka pōuri te tirohanga, ka rua te tirohanga, ka mamae rānei ngā kanohi. |
| Te pakari o te uaua, te ngoikore rānei | Ka pakari ngā uaua (ka pāhekeheke), ka uaua ai te piko me te wetewete. Ka heke hoki te kaha o te uaua. |
| Ngā raruraru mimi me te whēkau | Tērā pea ka puta ngā raruraru pēnei i te hiahia ohorere ki te mimi, te kore e taea te whakahaere i te mimi, te uaua rānei ki te mimi. |
| Ngā raruraru whakaaro me te mahara (Kohu Roro) | Tērā pea ka pā mai ngā āhuatanga pēnei i te uaua ki te arotahi, te ngaronga o te mahara, me te uaua ki te kimi kupu. |
Ko te mea nui, kaua e whakaaro kei a koe te PPMS nā te mea kotahi, e rua rānei o ēnei tohu. Ka kitea anō hoki ēnei tohu i roto i ngā āhuatanga maha atu. Nō reira, he mea nui kia kite i te tākuta kia tika ai te tātaritanga.
He aha te take e puta ai te PPMS? He aha te take?
Ina hoki, kāore anō kia mōhiotia te tino pūtake o te MS, te PPMS rānei, engari e whakapono ana ngā kairangahau he huinga āhuatanga tēnei.
- Te āhua ira: Mena he mate MS tō tētahi o tō whānau, he iti noa te tūponotanga ka pāngia koe e te MS. Engari he tino iti tēnei tūponotanga. Ko te tikanga o tēnei, kāore pea ngā tamariki e pāngia e te MS nā te mea kua pāngia ō rātou mātua.
- Ngā āhuatanga taiao: E whakaponohia ana hoki he pānga tō te pānga o ētahi huaketo, mate kitakita rānei ki te whanaketanga o te MS.
- Te whakahohenga o te pūnaha ārai mate: E ai ki tā mātou i kōrero ai i mua ake nei, ko te mea e tupu ana i konei ko te pakaru o te hipoki tiaki ('pūkahu myelin') e karapoti ana i ō tātou pūtau io e tō tātou ake pūnaha ārai mate. Ka whakararuraru tēnei kino i te tuku karere mā roto i ngā io.
Me pēhea te tautuhi i te PPMS?
Kāore he whakamātautau kotahi hei whakaū i te PPMS. Ka tātaritatia te mate e te tākuta mā te āta tirotiro i ō tohumate, tō hītori hauora, me ngā hua o ētahi whakamātautau. Ko te tikanga he tukanga e roa ana te wā.
Anei ētahi o ngā whakamātautau matua e mahia ana.
| Whakamātautau | He aha tāu e kite nei i roto i tēnei? |
|---|---|
| Matawai MRI | He āwhina tēnei ki te rapu i ngā whara i roto i ngā io o te roro me te taurakira. He whakamātautau nui tēnei hei tautuhi i te PPMS. |
| Werohanga o te Lumbar | Ka werohia he ngira iti ki roto i te taurakira hei tango i tētahi wai cerebrospinal iti, hei tirotiro hoki mō ngā pūmua motuhake ('oligoclonal bands') e kitea ana i roto i te MS. |
| Ngā Whakamātautau Toto | Ka mahia ngā whakamātautau toto hei whakarite kāore he atu āhuatanga hauora (hei tauira, te korenga o ngā huaora, ētahi atu mate pūnaha ārai mate) e puta ai ēnei tohu. |
| Tomography Whārite Whatu (OCT) | He matawai kore mamae tēnei. Ka whakamahia hei ine i te kino o ngā io kei muri o te kanohi (te io whatu). Ka taea hoki e te MS te kino i ēnei io. |
Ko te PPMS ka kitea i waenga i te 40 me te 50 tau te pakeke, engari ka taea te puta i te mate i ngā tau katoa.
He aha ngā maimoatanga mō te PPMS?
Kāore anō kia kitea he rongoā mō te PPMS. Heoi anō, kei reira ngā maimoatanga hei whakaroa i te whanaketanga o te mate, hei whakahaere hoki i ngā tohumate.
Ka taea te wehewehe i te maimoatanga kia rua ngā wāhanga matua:
1. Ngā Maimoatanga Whakarerekē Mate (DMT)
Ko te mahi a ēnei rongoā mā te whakaroa i te kino o ngā io i puta mai i te mate, me te whakaroa i te tere o te kino haere o te mate. Ko tētahi o ngā DMT matua kua whakaaetia mō te PPMS ko te ocrelizumab (Ocrevus®) . Ka taea e tēnei rongoā te āwhina ki te whakahaere i te tere o te kino haere o ngā tohu, ki tētahi taumata.
2. Te Whakahaere i ngā Tohu
He mea tino nui tēnei. He maha ngā maimoatanga e whakamahia ana hei whakahaere i ngā tohu e pā ana ki te oranga o ia rā.
- Whakaora tinana : Mā te whakakori tinana me ētahi atu maimoatanga ka whakaora i te pakari o te uaua, te ngoikore, me ngā raruraru taurite .
- Whakaora Mahi: Ka whakaako i ngā tikanga me ngā taputapu hei whakangawari ake i ngā mahi o ia rā (hei tauira, te whakakakahu, te tunu kai).
- Rongoā: Ka tohua pea e tō tākuta ngā momo rongoā mō ngā tohu pēnei i ngā raruraru whakahaere mimi, te mamae, te ngenge, me te pouri .
Mā tō tākuta e whakawhanake he mahere maimoatanga e tika ana māu. I mua i te tīmatanga o tētahi maimoatanga, kōrero ki tō tākuta mō ngā pānga taha ka pā mai.
He aha ngā mea hei tumanakohia ina noho tahi koe me te PPMS?
He āhuatanga te PPMS ka pā nui ki tō oranga o ia rā. Ina kino haere ngā tohu, me huri pea ētahi mea hei whakarite i tō haumaru me te karo i ngā aituā.
Hei tauira, me whakamahi pea koe i tētahi hikoi, i tētahi tūru wīra rānei ina uaua ki a koe te hikoi. Kia maumahara, ehara i te mea he hinganga te whakamahi i ēnei, engari he huarahi hei pupuri i tō mana motuhake me te āwhina i a koe ki te mahi i ngā mea e tika ana kia mahia e koe.
Ka pā kino pea tēnei mate pūmau ki a koe, ki te tinana, ki te hinengaro hoki. He mea noa te pōuri me te manukanuka. I ēnei wā, he tino whakamarie te kōrero ki tētahi kaiwhakatakoto whakaaro hauora hinengaro me te whakapuaki i ō kare ā-roto ki tētahi e whakawhirinaki ana koe.
Kāore te PPMS e pā tika ki te roanga o te ora, engari ka pā pea ngā raruraru o te mate ki te kounga o te oranga.
Āhea ahau me kite i te tākuta?
Mena kei a koe te PPMS, he mea nui kia noho tonu koe ki te whakapā atu ki tō tākuta. Rapua he tohutohu hauora, inā koa mēnā:
- Mena ka kino rawa atu ō tohumate ka pā ki ō mahi o ia rā.
- Mena he pararutiki, he mamae tonu, he ngoikore rānei te peka.
- Ki te hinga koe, ā, ka whara i te ngaronga o te taurite, haere tonu ki te ETU (Emergency Treatment Unit) .
- Mena he kino ngā pānga taha o te maimoatanga.
Ngā pātai hei pātai atu ki tō tākuta
- Kei a au te PPMS, tētahi atu momo MS rānei?
- Me pēhea taku whakahaere i aku tohumate?
- Me whai rongoā tinana, rongoā mahi rānei ahau?
- He aha ngā pānga taha o ngā rongoā e taunaki ana koe?
- Me whai āwhina nekenekehanga ahau pērā i te tūru wīra?
Karere Tangohia ki te Kāinga
- Ko te PPMS he momo MS e kore e puta ohorere mai ngā tohumate, engari ka kino haere i te roanga o te wā.
- Kāore anō kia mōhiotia he pūtake, he rongoā rānei, engari he tino whai hua ngā maimoatanga hei whakaroa i te haere whakamua o te mate me te whakahaere i ngā tohumate.
- He maha ngā whakamātautau e hiahiatia ana hei tautuhi i te mate, pērā i te MRI me te spinal tap.
- Mā te maimoatanga me ngā huringa momo noho, ka taea e koe te whakahaere i ō tohumate me te ora i tētahi oranga tonu.
- Ki te kite koe i ētahi huringa o ō tohumate, i ētahi āwangawanga rānei, kōrero tonu atu ki tō tākuta.
👩🏽⚕️ Ngā pātai tāpiri (FAQs)
💬 He aha te momo mate ko te PPMS (Primary Progressive Multiple Sclerosis)?
He mate kino te PPMS (PPMS) ka puta ina whakaekea e tō tātou ake pūnaha ārai mate te pūkahukahu myelin (te hipoki o ngā io) i roto i tō tātou roro me te taurakira. Kāore e tupu ohorere, engari ka haere mārire haere i roto i te wā, ka ngoikore te kaha o te tūroro ki te hikoi me te mahi.
💬 He aha ngā tohu tuatahi o te PPMS?
I ngā wāhanga tōmua, tera pea ka tino taumaha ō waewae, ka ngoikore, ka tere te ngenge. Tērā pea ka ngaro tō taurite, ka tūtuki i a koe e hikoi ana. Ka piki haere ēnei tohu i ia rā, i ia rā, ā, e kore e memeha.
💬 Ka taea te whakaora rawa i tēnei mate?
Engari, kāore anō kia kitea he rongoā mō te PPMS. Heoi anō, mā ngā rongoā hou (Ocrelizumab) me te whakaora tinana ka āwhina i te whakahaere i te whanaketanga o te mate ki te nui o te whakamarie, ā, ka whakaora hoki i te tūroro.
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