Sɔntɛnde, i nɔ kin izi fɔ yu fɔ waka, yu an ɛn fut dɛn kin swɛla, ɔ yu kin fil taya ɔltɛm fɔ natin? Yu kin fil bak se dɛn sik ya nɔ kin bigin wantɛm wantɛm, bɔt dɛn kin bɔku smɔl smɔl as tɛm de go? Dɔn i rili impɔtant fɔ mek yu no bɔt dis kɔndishɔn we dɛn kɔl PPMS we wi de tɔk bɔt tide. Pan ɔl we dis na tɔpik we kɔmplikt smɔl, wi go tɔk bɔt am rili simpul wan, di we we yu go ɔndastand.
Wetin na PPMS simpul wan?
Okay, fɔs lɛ wi si wetin na PPMS. di wɔd PPMS tinap fɔ `Primari Progressive Multiple Sclerosis` . Dis na wan kayn sik we dɛn kɔl `Multiple Sclerosis` ( MS ).
Fɔ tɔk am simpul wan, Multiple Sclerosis (MS) na wan sik we wi bɔdi in imyun sistɛm , we de protɛkt wi frɔm sik, kin mistek atak wi yon nervɔs sistɛm. Dis kin mek di infɔmeshɔn we de bitwin di bren, di spɛnal kɔd, ɛn di ɔda pat dɛn na di bɔdi nɔ ebul fɔ flɔ.
Naw tu men kayn MS de.
1. Relapsing-Remitting MS (RRMS): Dis na we di sik kin wɔs wantɛm wantɛm (wi kin kɔl dis `relapse`), dɔn afta sɔm tɛm di simptom dɛn kin bɛtɛ ɔ go kɔmɔt kpatakpata (`remission`). I tan lɛk ren, i kin kam wantɛm wantɛm, i kin fɔdɔm, dɔn i kin kam bak pan am bak.
2. Praymari Progresiv MS (PPMS): Di kayn we we wi de tɔk bɔt tide, PPMS, na difrɛn stori. Na ya, di sayn dɛm nɔ kin flay wantɛm wantɛm ɛn afta dat dɛn kin stɔp. Bifo dat, de sik kin wɔs smɔl smɔl as tɛm de go. Lɛk drizzle, i kin wet smɔl ɛn afta dat i kin rili wet. Sɔmtɛm, de sik kin kam pan pɔrsin, bɔt dat nɔr kin apin so ɔltɛm.
Na lɛk 10% pan di wan dɛn we gɛt MS gɛt dis kayn MS, we dɛn kɔl PPMS.
Wetin na di men sayn dɛm fɔ PPMS?
Insay PPMS, di sayn dɛm nɔ kin rili klia fɔs. Bɔt as tɛm de go, dɛn kin wɔri mɔ ɛn mɔ. Dɛn sayn ya kin difrɛn frɔm wan pɔrsin to ɔda pɔrsin. Lɛ wi tek tɛm luk pan de men sayn dɛm wae yu kin gɛt.
| Di sayn we de sho se di sik de | Wan simpul ɛksplen |
|---|---|
| I nɔ izi fɔ waka | Dis na di kɔmɔn sayn fɔ PPMS. I kin tranga fɔ waka bikɔs yu wik, yu stif, ɔ yu nɔ de balans na yu leg. |
| Fɔ taya ɔltɛm | Fɔ fil taya pasmak, ivin afta yu dɔn slip fayn ɛn nɔ du natin. Dis na bɔku tin pas di nɔmal taya we pɔsin kin taya. |
| Di an ɛn fut dɛn kin swɛla ɔ nɔ kin fil fayn | Yu kin fil lɛk yu nɔ gɛt bɛtɛ trɛnk, yu kin gɛt pin ɛn nidul, ɔ yu nɔ kin fil fayn na difrɛn pat dɛn na yu bɔdi, mɔ yu an ɛn fut. |
| Vishɔn kin chenj | Yu nɔ kin si fayn, yu kin si tu tɛm, ɔ yu yay kin fil pen. |
| Mɔsul dɛn kin stif ɔ wik | di mכsul dεm kin stif (spasticity), we kin mek i at fכ bεnd εn כn bεnd. Di trɛnk we di mɔsul dɛn gɛt bak kin go dɔŋ. |
| Prɔblɛm fɔ urinary ɛn bɔdi | Prɔblɛm lɛk we pɔsin nid fɔ pis wantɛm wantɛm, we i nɔ ebul fɔ kɔntrol aw i de pis, ɔ we i nɔ izi fɔ pis kin apin. |
| Prɔblɛm fɔ tink ɛn mɛmba (Brain Fog) . | Tin dɛn lɛk we i nɔ kin izi fɔ pe atɛnshɔn, we i nɔ kin mɛmba, ɛn we i nɔ kin izi fɔ fɛn wɔd dɛn kin apin. |
Di tin we impɔtant pas ɔl na, nɔr tink se yu gɛt PPMS jɔs bikɔs yu gɛt wan ɔ tu pan dɛn sik ya. Dɛn kin si dɛn sayn ya bak pan bɔrku ɔda sik dɛm. So, i impɔtant fɔ go to dɔktɔ fɔ mek dɛn no di sik fayn fayn wan.
Wetin mek PPMS de divɛlɔp? Wetin na di kɔz?
Infakt, dɛn nɔ stil no di rayt tin we kin mek pɔsin gɛt MS ɔ PPMS, bɔt di wan dɛn we de stɔdi bɔt dis biliv se na tin dɛn we dɛn jɔyn togɛda.
- Jɛnɛtik prɛdispɔzishɔn: If pɔsin na yu famili gɛt MS, yusɛf gɛt smɔl risk fɔ gɛt am. Bɔt dis na rili smɔl prɔblɛm. Dis min se i nɔ go izi fɔ mek pikin dɛn gɛt am jɔs bikɔs dɛn mama ɛn papa bin gɛt am.
- Di tin dɛn we de apin na di envayrɔmɛnt: Dɛn biliv bak se we pɔsin gɛt sɔm vayrɔs ɔ baktriyal infɛkshɔn kin gɛt sɔm inflɔwɛns pan di divɛlɔpmɛnt fɔ MS.
- imyun sistεm aktibכshכn: lεk aw wi bin se, wetin de apin ya na dat wi כwn imyun sistεm de pwεl di prכtektiv kכva (`myelin sheath`) we de rawnd wi nεv sεl dεm . dis damej de ambɔg di transmishכn fכ mεsej tru di nεv dεm.
Aw dɛn kin no PPMS?
No wan tɛst nɔ de we go ebul fɔ kɔnfɔm PPMS. Dɔktɔ kin no se yu gɛt di sik bay we i tek tɛm luk aw yu gɛt di sik, di mɛrɛsin we yu de du, ɛn di tin dɛn we yu dɔn du fɔ sɔm tɛst dɛn. Dis min se na tin we kin tek sɔm tɛm.
Na sɔm pan di men tɛst dɛn we dɛn kin du.
| Tɛst | Wetin yu si pan dis? |
|---|---|
| MRI skan we dɛn kin du | dis kin εp fכ luk fכ lεsin dεm na di nεv dεm na di bren εn spεnal kכd. Dis na impɔtant tɛst fɔ no PPMS. |
| Lumbar Punkchɔ we dɛn kin yuz fɔ mek di bɔdi | sכm sכm nidul dεn de put insay di spεnal kכd fכ pul sכm sכm sכm sεribrospεnal fכluid εn egzamin am fכ di prεsεns fכ spεsifi k protin dεm (`oligoclonal bands`) we dεn si insay MS. |
| Tɛst fɔ Blɔd | Dɛn kin du blɔd tɛst fɔ mek shɔ se nɔ ɔda mɛrɛsin nɔ de (e.g., vaytamɛn we nɔ gɛt bɛtɛ vaytamɛn, ɔda ɔtoimyun sik dɛn) we kin de mek dɛn gɛt dɛn sik ya. |
| Optik kohɛrɛns Tomografi (OCT) . | Dis na skan we nɔ de mek pɔsin fil pen. dεn kin yuz am fכ mכsu di damej pan di nεv dεm na di bak pat pan di yay (di optik nεv). MS kin pwɛl dɛn nerv ya bak. |
Dɛn kin no PPMS bitwin 40 ɛn 50 ia, bɔt di sik kin apin pan ɛni ej.
Wetin na di tritmɛnt dɛm fɔ PPMS?
No mɛrɛsin nɔ de fɔ PPMS yet. Bɔt sɔm tritmɛnt dɛn de we kin mek di sik slo ɛn mek layf izi bay we dɛn de kɔntrol di sayn dɛm.
Dɛn kin sheb di tritmɛnt to tu men pat:
1. Di tritmɛnt dɛn we de chenj di sik (DMT) .
Dɛn mɛrɛsin ya kin woke bay wae dɛn kin slo fɔ pwɛl di nerv dɛm wae de sik kin kam wit ɛn slo fɔ mek di sik de wɔs. Wan pan di men DMT dɛm we dɛn dɔn gri fɔ fɔ PPMS na ocrelizumab (Ocrevus®) . Dis mɛrɛsin kin ɛp fɔ kɔntrol di rεt wae de sik kin wɔs, to sɔm mak.
2. Manejmɛnt fɔ di Simptom dɛn
Dis rili impɔtant. Dɛn kin yuz difrɛn tritmɛnt fɔ kɔntrol di sayn dɛm wae kin afɛkt ɛvride layf.
- Fisiotɛrapi : Ɛksesaiz ɛn ɔda tritmɛnt dɛn kin mek yu fil fri frɔm di mɔsul dɛn we stif, wik, ɛn prɔblɛm wit balans .
- Ɔkupeshɔn Tɛrapi: I de tich di we ɛn divays fɔ mek ɛvride wok (e.g., drɛs, kuk) izi.
- Mɛrɛsin: Yu dɔktɔ kin gi yu difrɛn mɛrɛsin fɔ di sayn dɛm lɛk wae yu gɛt prɔblɛm wit yu urinary control, pen, taya, ɛn pwɛl hat .
Yu dɔktɔ go mek wan tritmɛnt plan we go fayn fɔ yu. Bifo yu bigin ɛni tritmɛnt, tɔk to yu dɔktɔ bɔt di bad tin dɛn we kin apin to yu.
Wetin fɔ ɛkspɛkt we yu de liv wit PPMS?
PPMS na wan sik wae kin gɛt big impak pan yu ɛvride layf. As de sik de wɔs, yu kin nid fɔ mek sɔm chenj dɛn fɔ mek shɔ se yu sef ɛn fɔ avɔyd aksidɛnt.
Fɔ ɛgzampul, yu go nid fɔ yuz waka ɔ wilchia we i nɔ izi fɔ yu fɔ waka. Mɛmba se fɔ yuz dɛn tin ya nɔto fɔ win, na we fɔ mek yu kɔntinyu fɔ gɛt yu indipɛndɛns ɛn ɛp yu fɔ du di tin dɛn we yu nid fɔ du.
Fɔ liv wit sik wae nɔr de mɛn lɛk dis kin tek yu bɔdi ɛn maynd. Na nɔmal tin fɔ fil bad ɛn wɔri. Sɔmtɛm lɛk dis, wae yu tɔk to pɔrsin wae de gi yu mɛntɛl hεlth ɛn tɛl pɔrsin wae yu kin abop pan aw yu de fil, dat kin mek yu fil fayn.
PPMS nɔ de afɛkt di layf span dairekt wan, bɔt di kɔmplikeshɔn dɛn we di sik kin gɛt kin afɛkt di kwaliti fɔ layf.
Ustɛm a fɔ go to di dɔktɔ?
If yu gɛt PPMS, i impɔtant fɔ de kɔntakt yu dɔktɔ ɔltɛm. Go to dɔktɔ, mɔ if:
- If yu sik dɛn kin so bad dat dɛn kin afɛkt di tin dɛn we yu kin du ɛvride.
- If paralayz de, i de pen ɔltɛm ɔ i de swɛla na di an.
- If yu fɔdɔm ɛn wund bikɔs yu nɔ gɛt bɛtɛ balans, go na di ETU (Imergency Treatment Unit) wantɛm wantɛm.
- If di sayd ɛfɛkt dɛm fɔ di tritmɛnt rili bad.
Kwɛstyɔn dɛn we yu fɔ aks yu dɔktɔ
- A gɛt PPMS ɔ ɔda kayn MS?
- Aw a go ebul fɔ kɔntrol mi sik dɛn?
- A nid fyzikal tritmɛnt ɔ ɔkupeshɔn tɛrapi tritmɛnt?
- Wetin na di sayd ɛfɛkt dɛm fɔ di mɛrɛsin dɛm we yu kin advays?
- A go nid sɔntin we go ɛp mi fɔ muv lɛk wilchia?
Mɛsej we dɛn kin kɛr go na os
- PPMS na wan kayn MS we di sik nɔ kin flay wantɛm wantɛm, bɔt i kin wɔs smɔl smɔl as tɛm de go.
- Nɔrbɔdi nɔr no bɔt de kɔz ɛn no mɛrɛsin nɔr de fɔ mɛn am, bɔt tritmɛnt dɛn de we rili fayn fɔ mek di sik slo ɛn kɔntrol di sayn dɛm.
- Bɔku tɛst dɛn lɛk MRI skan ɛn spɛshal tap fɔ no if pɔsin gɛt di sik.
- Wit tritmɛnt ɛn layf stayl chenj, yu kin ebul fɔ kɔntrol yu sik ɛn liv ful layf.
- If yu notis ɛni chenj na yu sik ɔr yu gɛt ɛnitin fɔ wɔri bɔt, tɔk to yu dɔktɔ wantɛm wantɛm.
👩🏽 ⚕️ Ɔda kwɛstyɔn dɛn (FAQ dɛn)
💬 Us kayn sik na PPMS (Primary Progressive Multiple Sclerosis)?
PPMS na siriɔs sik (MS) we kin apin we wi yon imyun sistɛm de atak di maylin sheath (di kɔba fɔ di nɛv dɛm) na wi bren ɛn spɛshal kɔd. I nɔ kin kam wantɛm wantɛm, bɔt i kin go bifo smɔl smɔl as tɛm de go, ɛn dis kin mek di pɔsin we sik nɔ ebul fɔ waka ɛn wok.
💬 Wetin na di fɔs sayn dɛm fɔ PPMS?
We yu bigin, yu kin fil big big ebi na yu leg, yu kin swɛla, ɛn yu kin taya kwik kwik wan. Bɔku tɛm yu kin lɔs yu balans ɛn stɔp we yu de waka. Dɛn sayn ya go bɔku smɔl smɔl de go de ɛn dɛn nɔ go stɔp.
💬 Yu tink se dis sik kin mɛn ɔltogɛda?
I sɔri fɔ no se, no mɛrɛsin nɔ de fɔ PPMS yet. Bɔt nyu mɛrɛsin (Ocrelizumab) ɛn fisiotɛrapi kin ɛp fɔ kɔntrol aw di sik de go bifo bɔku bɔku wan ɛn gi di pɔsin we sik.
💬 Comments (0)
No kɔmɛnt nɔ de yet. Ad yu kɔmɛnt ya fɔ di fɔs tɛm.
Ad yu kɔmɛnt