He aha ka holomua MS holomua?

Anter

• Nā ʻano ʻē aʻe o MS
• He aha ka wānana no PPMS?
• PPMS vs. SPMS
• PPMS vs. RRMS
• He aha nā hōʻailona o PPMS?
• He aha ke kumu o PPMS?
• Pehea e ʻike ʻia ai ka PPMS?
• Pehea e mālama ʻia ai ʻo PPMS?
• He aha nā loli nohona e kōkua ai me PPMS?
• Hoʻololi nā PPMS
• Kākoʻo
• Outlook
• Lawe aku

Multiple sclerosis (MS) kahi maʻi autoimmune mau e pili ana i nā aʻalolo optic, spinal cord, a me ka lolo.

ʻO nā poʻe i ʻike ʻia me MS he ʻokoʻa loa ko lākou ʻike. Heʻoiaʻiʻo loa kēia no ka poʻe i ʻike ʻia me ka sclerosis multiplier mua loa (PPMS), kekahi o nā ʻano rarer o MS.

ʻO PPMS kahi ʻano ʻokoʻa o MS. ʻAʻole pili i ka nui o ka mumū e like me nā ʻano MS i hoʻi hou.

Hoʻokumu ʻia nā ʻōuli nui o PPMS e nā ʻino nerve. Kū kēia mau ʻōuli no ka hiki ʻole i nā aʻalolo ke hoʻouna a loaʻa i nā leka i kekahi i kekahi me ka pololei.

Inā loaʻa iā ʻoe ka PPMS, ʻoi aku ka nui o nā hanana o ke kīnā hele ma mua o nā ʻōuli ʻē aʻe, ke hoʻohālikelike ʻia me ka poʻe i loaʻa nā ʻano MS ʻē aʻe.

ʻAʻole maʻamau ka PPMS. Hoʻopili ia ma kahi o 10 a 15 pākēneka o ka poʻe i ʻike ʻia me MS. Holomua ʻo PPMS mai ka manawa āu e ʻike ai i kāu mau hōʻailona mua (mua).

Loaʻa kekahi mau ʻano MS i nā wā o ka hoʻi hou ʻana a me nā kala ʻana. Akā ʻike lohi ʻia nā ʻōuli o PPMS akā hoʻomau mau i ka holo ʻana o ka manawa. Hiki i nā poʻe me PPMS ke hoʻi hou.

Hoʻokumu pū ʻo PPMS i ka hana neurological e hōʻole i ka ʻoi loa o ka wikiwiki ma mua o nā ʻano MS ʻē aʻe. Akā ʻo ke koʻikoʻi o PPMS a me ka wikiwiki o ka hoʻomohala ʻana e pili ana i kēlā me kēia hihia.

Ua hoʻomau paha kekahi poʻe i ka PPMS e ʻoi ana ka paʻakikī. He mau manawa kūpaʻa paha kekahi me ka ʻole o nā uila o nā ʻōuli, a i ʻole nā ​​wā o nā hoʻomaikaʻi liʻiliʻi.

ʻO ka poʻe i ʻike mua ʻia me ka holomua-relapsing MS (PRMS) i kēia manawa ua manaʻo ʻia he holomua mua.

Nā ʻano ʻē aʻe o MS

ʻO nā ʻano ʻē aʻe o MS:

• maʻi maʻi kaʻawale (CIS)
• relapsing-remit MS (RRMS)
• ʻelua MS holomua (SPMS)

ʻO kēia mau ʻano, i kapa ʻia hoʻi he mau papa, wehewehe ʻia e ka hopena o kou kino.

He ʻano like ʻole ko kēlā me kēia ʻano me nā lapaʻau he nui e hoʻopili ʻia ana. E loli pū hoʻi ke koʻikoʻi o kā lākou mau hōʻailona a me nā hiʻohiʻona wā lōʻihi.

ʻO CIS kahi ʻano MS hou i wehewehe ʻia. Hana ʻo CIS ke loaʻa iā ʻoe kahi manawa hoʻokahi o nā hōʻailona neurologic e mau no 24 mau hola.

He aha ka wānana no PPMS?

ʻO ka wānana o PPM he ʻokoʻa ia no kēlā me kēia kanaka a ʻike ʻole ʻole ʻia.

Hiki ke ʻike ʻia nā ʻōuli ma ke ʻano o ka manawa, keu hoʻi i kou ʻelemakule a hoʻomaka ʻoe e nalo i kekahi mau hana i loko o nā lālā e like me kou ʻōpū, ʻōpū, a me nā genital ma muli o ka makahiki a me PPMS.

PPMS vs. SPMS

Eia nā ʻokoʻa nui ma waena o PPMS a me SPMS:

• Hoʻomaka pinepine ka SPMS ma ke ʻano he diagnostic o RRMS a laila lilo i ʻoi aku ka koʻikoʻi i ka manawa me ka ʻole o kahi remission a hoʻomaikaʻi paha o nā ʻōuli.
• ʻO SPMS ka lua o ka pae o ka ʻike MS, ʻoiai ʻo RRMS kahi hōʻailona mua ma kāna iho.

PPMS vs. RRMS

Eia nā ʻokoʻa nui ma waena o PPMS a me RRMS:

• ʻO RRMS ka ʻano maʻamau o MS (ma kahi o 85 pākēneka o nā diagnoses), ʻoiai ʻo PPMS kekahi o nā mea liʻiliʻi loa.
• ʻElua a ʻekolu mau manawa o ka RRMS i nā wahine e like me nā kāne.
• ʻOi aku ka maʻamau o nā ʻāpana o nā hōʻailona hou i ka RRMS ma mua o ka PPMS.
• I ka wā o ke kala ʻia ʻana i RRMS, ʻaʻole paha ʻoe e ʻike iki i kekahi mau ʻōuli, a i ʻole he mau ʻōuli wale nō ʻaʻole koʻikoʻi loa.
• ʻO ka maʻamau, ʻoi aku nā liona o ka lolo ma ka MRI lolo me RRMS ma mua o PPMS inā ʻaʻole i mālama ʻia.
• ʻIke ʻia ʻo RRMS ma mua o ke ola ma mua o ka PPMS, ma kahi o 20 a 30 paha, i kūʻē i nā 40 a me 50 me PPMS.

He aha nā hōʻailona o PPMS?

Hoʻololi ka PPMS i nā mea āpau.

ʻO nā ʻōuli maʻamau o ka PPMS me ka nāwaliwali i kou mau wāwae a me ka pilikia ʻana i ka hele ʻana. Hoʻomaopopo hou ʻia kēia mau hōʻailona ma kahi o 2 mau makahiki.

ʻO nā ʻōuli ʻē aʻe i ʻano like me kēia ʻano:

• ʻoʻoleʻa i nā wāwae
• nā pilikia me ke kaulike
• ʻeha
• nāwaliwali a luhi hoʻi
• pilikia me ka hihiʻo
• bladder a kīnā ʻole o ke kino
• kaumaha
• luhi
• numbness a me / a i ʻole tingling ma nā ʻāpana like ʻole o ke kino

He aha ke kumu o PPMS?

ʻO ke kumu kikoʻī o PPMS, a MS ma ka laulā, ʻaʻole ʻike ʻia.

ʻO ke kumumanaʻo maʻamau ka hoʻomaka ʻana o MS i ka hoʻomaka ʻana o kāu ʻōnaehana pale pale i kāu ʻōnaehana kikowaena. Loaʻa kēia i ka nalo ʻana o ka myelin, ka uhi pale a puni nā ʻalolo i kāu ʻōnaehana waena.

ʻOiai ʻaʻole manaʻo nā kauka he hiki ke hoʻoilina iā PPMS, loaʻa paha iā ia kahi ʻāpana genetika. Manaʻo kekahi e hoʻonāukiuki ʻia paha e kahi virus a i ʻole kahi toxin i ke kaiapuni ke hoʻohui ʻia me kahi predisposition genetical hiki ke hoʻonui i ka makaʻu o ka hoʻomohala ʻana iā MS.

Pehea e ʻike ʻia ai ka PPMS?

Hana pū me kāu kauka e kōkua i ke kuhi ʻana i kahi o nā ʻano ʻehā o MS i loaʻa iā ʻoe.

He ʻano ʻokoʻa ko kēlā me kēia ʻano MS a me nā pono lapaʻau ʻokoʻa. ʻAʻohe hōʻike kikoʻī e hāʻawi i kahi hōʻailona PPMS.

ʻIke pinepine nā kauka i ke kuhi ʻana iā PPMS me ka hoʻohālikelike ʻia me nā ʻano MS a me nā kūlana holomua.

ʻO kēia no ka mea e holomua kahi pilikia neurological no 1 a i ʻole 2 mau makahiki i mea e loaʻa ai i kahi kanaka kahi hōʻoia PPMS paʻa.

ʻO nā kūlana ʻē aʻe me nā ʻōuli e like me PPMS:

• kahi kūlana hoʻoilina e hana i nā wāwae ʻoʻoleʻa, nāwaliwali
• kahi wikamina B-12 hemahema i kumu i nā ʻōuli like
• Maʻi Lyme
• nā maʻi viral, e like me ka maʻi T-cell leukemia maʻi ʻaʻano 1 (HTLV-1)
• ʻano o ka maʻi pākī, e like me ke kuamoʻo
• kahi tumo kokoke i ka iwi kuamoʻo

No ke kuhikuhi ʻana iā PPMS, hiki i kāu kauka:

• loiloi i kāu mau ʻōuli
• loiloi i kāu moʻolelo neurological
• hana i kahi hoʻokolokolo kino e nānā ana i kou mau mākala a me nā aʻalolo
• hana i kahi scan MRI o kou lolo a me ka iwi kuamoʻo
• hana i kahi lumbar puncture e nānā i nā hōʻailona o MS i ka wai o ka iwi kuamoʻo
• hana i nā hoʻāʻo e hoʻāla ʻia (EP) e ʻike i ke ʻano kikoʻī o MS; Hoʻoikaika nā ho'āʻo EP i nā ala nerve sensory e hoʻoholo ai i ka hana uila o ka lolo

Pehea e mālama ʻia ai ʻo PPMS?

ʻO Ocrelizumab (Ocrevus) ka lāʻau wale nō i ʻae ʻia e ka Food and Drug Administration (FDA) e mālama iā PPMS. Kōkua ia i ka palena ʻana i ka hoʻohaʻahaʻa nerve.

Mālama kekahi mau lāʻau i nā hōʻailona kikoʻī o PPMS, e like me:

• ʻūmiʻi mākala
• ʻeha
• luhi
• nā pilikia o ka ʻōpū a me ka ʻōpū.

Nui a hewahewa nā hoʻololi lapaʻau (DMT) a me nā steroid i ʻae ʻia e ka FDA no ka hoʻi hou ʻana i nā ʻano MS.

ʻAʻole mālama pono kēia mau DMT iā PPMS.

Ke hoʻomohala ʻia nei kekahi mau ʻano lapaʻau hou no PPMS e kōkua ai i ka hōʻemi ʻana i ka mumū e hōʻeha kūʻē i kou mau aʻalolo.

Kōkua kekahi kekahi o kēia i ka hōʻino ʻana a me ka hoʻoponopono ʻana i nā kaʻina hana e hoʻopili i kou aʻa. Hiki paha i kēia mau hoʻoponopono ke kōkua i ka hoʻihoʻi ʻana i ka myelin a puni kou aʻa i hōʻino ʻia e PPMS.

Hoʻokahi lapaʻau, ibudilast, i hoʻohana ʻia i Iapana ma kahi o 20 mau makahiki e mālama ai i ka hānō a loaʻa paha i kekahi hiki ke mālama i ka mumū ma PPMS.

Ua hoʻohana ʻia kekahi lāʻau lapaʻau i kapa ʻia masitinib no nā maʻi āpau e ka ʻimi ʻana i nā pūnaewele mast e pili ana i nā hopena maʻi a hōʻike i ka hoʻohiki ma ke ʻano he lapaʻau no PPMS kekahi.

He mea nui e hoʻomaopopo he mau mua loa kēia mau ʻano lapaʻau ʻelua i ka hoʻomohala ʻana a me ka noiʻi ʻana.

He aha nā loli nohona e kōkua ai me PPMS?

Hiki i nā poʻe me PPMS ke hōʻoluʻolu i nā ʻōuli me ka hoʻoikaika kino a hoʻolōʻihi ʻia i:

• noho paʻa me he hiki
• palena i ka nui o kou kaumaha
• hoʻonui i nā pae ikehu

Eia kekahi mau hana ʻē aʻe i hiki iā ʻoe ke lawe e mālama i kāu mau hōʻailona PPMS a mālama i kou ʻano o ke ola.

• ʻAi i kahi papaʻai olakino a momona.
• Noho i ka papa manawa hiamoe maʻamau.
• E hele i ka hoʻōla kino a i ʻole ka hana, hiki ke aʻo iā ʻoe i nā hoʻolālā no ka hoʻonui ʻana i ka neʻe a me ka mālama ʻana i nā ʻōuli.

Hoʻololi nā PPMS

Hoʻohana ʻia nā mea hoʻololi ʻehā e hōʻike i ka PPMS ma kahi o ka manawa:

• ʻEleu me ka holomua: PPMS me nā hōʻailona hōʻino a hoʻi hou a i ʻole me ka hana MRI hou; e hiki mai ana ka hoʻonui kīnā ʻana
• ʻEleu me ka holomua ʻole: PPMS me ka hoʻi hou ʻana a i ʻole ka hana MRI, akā ʻaʻole hoʻonui i ke kīnā ʻole
• ʻAʻole ʻeleu me ka holomua: PPMS me ka hoʻi ʻole o ka hana MRI, akā me ka hoʻonui ʻana o ke kīnā
• ʻAʻole ʻeleu me ka holomua ʻole: PPMS me ka hoʻi ʻole o ka hana, ka hana MRI, a me ka hoʻonui ʻana i ke kīnā ʻole

ʻO kahi hiʻohiʻona nui o PPMS ka nele o nā kala.

ʻOiai inā ʻike ke kanaka me PPMS i kā lākou mau hōʻailona hōʻailona - manaʻo lākou ʻaʻole lākou e ʻike i ka hana ʻoi aku ka maikaʻi o ka maʻi a i ʻole ka hoʻonui ʻana o ke kīnā - ʻaʻole hoʻomaikaʻi maoli kā lākou mau ʻōuli. Me kēia palapala o MS, ʻaʻole e loaʻa hou ka poʻe i nā hana i nalowale paha lākou.

Kākoʻo

Inā ʻoe e noho nei me PPMS, he mea nui ia e loaʻa nā kumu o ke kākoʻo. Aia nā koho e ʻimi i ke kākoʻo ma kēlā me kēia kumu a i ʻole ka kaiāulu MS ākea.

Hiki i ka noho ʻana me kahi maʻi maʻi mau ke lilo i kaona kaumaha. Inā ʻoe e ʻike nei i nā ʻano mau o ke kaumaha, ka huhū, ke kanikau, a i ʻole nā ​​manaʻo paʻakikī ʻē aʻe, e hoʻomaopopo i kāu kauka. Hiki iā lākou ke kuhikuhi iā ʻoe i kahi loea olakino noʻonoʻo hiki ke kōkua.

Hiki iā ʻoe ke ʻimi i kahi ʻoihana ola noʻonoʻo ma kāu iho. ʻO kahi laʻana, hāʻawi ka American Psychological Association i kahi mea hana e ʻimi ai i nā psychologists a puni ka United States. Hāʻawi pū ʻo MentalHealth.gov i kahi kōkua kōkua kōkua kōkua.

E ʻike paha ʻoe he mea kōkua ke kamaʻilio pū me nā poʻe ʻē aʻe e noho nei me MS. E noʻonoʻo e nānā i nā pūʻulu kākoʻo, ma ka pūnaewele a i ʻole ma ke kino.

Hāʻawi ka National Multiple Sclerosis Society i kahi lawelawe e kōkua iā ʻoe e ʻike i nā hui kākoʻo kūloko i kou wahi. Loaʻa iā lākou kahi papahana pilina pili i ka hoa e holo ʻia e nā mea manawaleʻa hoʻomaʻamaʻa e noho nei me MS.

Outlook

E hoʻopaʻa me kāu kauka i nā manawa inā loaʻa iā PPMS, ʻoiai inā ʻaʻole i loaʻa iā ʻoe kekahi mau hōʻailona no kekahi manawa a keu hoʻi ke ʻike ʻia nā pīhoihoi i kou ola e kahi mahele o nā hōʻailona.

Hiki ke loaʻa ke ola kiʻekiʻe me PPMS ʻoiai ʻoe e hana pū me kāu kauka e ʻike i nā ʻano ʻoi loa e like me ke ʻano o ka nohona a me nā loli dietary e holo pono ana iā ʻoe.

Lawe aku

ʻAʻohe mea ola no PPMS, akā hana ka lapaʻau i kahi ʻokoʻa. ʻOiai holomua ke ʻano, hiki i nā kānaka ke ʻike i nā wā o ka manawa kahi e wī ʻole ai nā ʻōuli.

Inā noho ʻoe me PPMS, e paipai kāu kauka i kahi hoʻolālā lapaʻau e pili ana i kāu mau hōʻailona a me ke olakino laulā.

ʻO ka hoʻomohala ʻana i nā ʻano nohona olakino a me ka pili mau ʻana i nā kumuwaiwai o ke kākoʻo hiki ke kōkua iā ʻoe e mālama i kou ola a me ka nohona holoʻokoʻa.