Wetin na PPMS (Primary Progressive Multiple Sclerosis) we pɔsin kin gɛt? Lɛ wi tɔk bɔt am simpul wan!

Yu kin dɔn yɛri bɔt wan sik we dɛn kɔl ` Multiple Sclerosis (MS)`. PPMS (Primary Progressive Multiple Sclerosis) na wan patikyula fכm fכ MS. If na so i bi, yu sik nɔ kin kam wantɛm wantɛm, i kin stɔp afta sɔm dez, ɛn i kin kam bak bak ɛn bak. Bifo dat, yu sik dɛn kin bɔku smɔl smɔl, smɔl smɔl, ɛn smɔl smɔl as tɛm de go . Jɔs lɛk fɔ klaym stej, dɛn sayn ya kin wɔs smɔl smɔl. Nɔ wɔri, dis kin tan lɛk se i kɔmplikt smɔl. Mek wi tok abaut evritin klia en simpul, okay?

Wetin na PPMS rili?

Fɔ tɔk am simpul wan, `Multiple Sclerosis (MS)` na wan kɔndishɔn we wi yon imyun sistɛm, di sistɛm we de protɛkt wi frɔm sik, de mistek atak wi yon sɛntral nɛvɔ sistɛm (`sɛntral nɛvɔ sistɛm`) – di bren ɛn di spaynal kɔd (di nɛv kɔd dɛn we de insay di spayna). dis de pwεl di prכtektiv kכva (myelin) we de rawnd di nεv fayb dεm.

Naw, sɔm men kayn MS dɛn de.

• Rilapsing-Remitting MS (RRMS): Bɔrku pipul dɛn kin gɛt dis kayn. Na dis kayn sik, di sik kin wɔs wantɛm wantɛm (wi kin kɔl dis `rilaps`), ɛn afta sɔm tɛm, di sayn dɛm kin go ɔlsay ɔr kin go kpatakpata.
• Praymari Progresiv MS (PPMS): Insay PPMS, di kayn we we wi de tɔk bɔt tide, na smɔl klia `rilaps` de lɛk na RRMS. Bifo dat, de sik kin wɔs smɔl smɔl frɔm di biginin. Sɔmtɛm, smɔl `fluktueshɔn` kin de, we min se di sayn dɛm kin bɛtɛ ɛn wɔs. Bɔt ɔltogɛda, de sik kin wɔs smɔl smɔl.
• Sɛkɔndari Prɔgrɛsiv MS (SPMS): Sɔm pipul dɛm wae gɛt RRMS kin gɛt dis sik to SPMS afta sɔm ia. Dɔn dɛn sik kin wɔs smɔl smɔl ɛn dɛn nɔ kin gɛt di sik bak.

Sɔntɛnde dɛn kin kɔl PPMS ɛn SPMS togɛda `Progressive MS` bikɔs dɛn ɔl tu gɛt prɔgrɛsiv nature. insay PPMS, sכm lεvεl de fכ inflameshn na di nεv sεstem, εn di nεv sεl dεm de pwεl εn sכmtεm dεn de lכs dεn wok. Dis na wetin wi kin kɔl `nyurodijɛnɛreshɔn`.

Aw kɔmɔn tin fɔ PPMS?

Bɔku bɔku pipul dɛn de we gɛt MS ɔlsay na di wɔl. Dɛn se na lɛk wan milyɔn pipul dɛn we gɛt MS na Amɛrika nɔmɔ. Na lɛk 10% pan dɛm, ɔr lɛk wan pan tɛn pipul dɛm, gɛt dis kayn MS we dɛn kɔl PPMS. So, PPMS nɔ kin bɔku smɔl pas ɔda kayn MS.

Wetin na di sayn dɛm fɔ PPMS? Aw dɛn kin fil?

Di men tin we PPMS gɛt na dat di MS simptom dɛn kin wɔs smɔl smɔl.Dɛn sayn ya kin difrɛn frɔm wan pɔrsin to ɔda pɔrsin. Dɔn bak, di we aw de sik kin bigin ɛn aw dɛn kin go bifo kin difrɛn frɔm wan pɔsin to ɔda pɔsin.

Na sɔm pan de sayn dɛm wae kin kam pan pɔrsin:

• I nɔ izi fɔ waka: Dis na di fɔs sayn we kin afɛkt bɔku pipul dɛn we gɛt PPMS. Dɛn kin gɛt stif na dɛn leg, dɛn kin wik, ɛn dɛn nɔ kin ebul fɔ balans. Dɛn kin fil bak taya kwik we dɛn de waka.
• Tingling ɔ numbness na difrɛn pat dɛm na di bɔdi: Dis kin apin na di an, fut, fes, ɔr ɛni ɔda say na di bɔdi.
• di chenj we yu de si: Yu kin si fayn fayn wan na wan yay, yu kin si tu tɛm, ɔ yu kin fil pen we yu de muv di yay. Bɔt dɛn prɔblɛm ya we de mek pɔsin si tin nɔ kin bɔku na PPMS pas na RRMS.
• Fɔ fil taya ɔltɛm (`fatigue`): Dis nɔto nɔmal taya. Yu kin fil lɛk se yu nɔ de bɛtɛ ilɛksɛf yu rɛst. Dis kin bi big tin we de ambɔg yu fɔ du tin dɛn we yu de du ɛvride.
• I nɔ izi fɔ pis ɛn pul di dɔti: Dis kin inklud fɔ pis wantɛm wantɛm, wantɛm wantɛm (`urgency`), i nɔ kin izi fɔ kɔntrol di pis (`incontinence`), ɛn i nɔ kin izi fɔ ɛmti di blad ɔltogɛda . Kɔnstipɛshɔn bak kin apin.
• Fɔ fil lɛk se sɔmbɔdi de ol yu chɛst ɔ yu bɛlɛ eria tayt: Sɔm pipul dɛn kin kɔl dis bak di `MS ɔg`.
• wan sens we ilektrikal shok de ron dכn di bak, an, כ leg we dεn bεn di nεk fכ go bifo: dεn kכl dis `Lhermitte's sign`.
• di mכsul dεm stiff (spasticity) כ wik: Dis kin mek i at fכ manipul εn muv yu limb dεm.
• Prɔblɛm dɛn we yu de tɔk: Yu kin fil lɛk se yu wɔd dɛn de swɛ ɔ yu de chenj di spid we yu de tɔk.
• Prɔblɛm dɛn fɔ swɛla.
• Prɔblɛm fɔ tink ɛn mɛmba: Fɔ fil lɛk se yu bren de fɔg (`bren fɔg`), we min se i at fɔ mɛmba tin, fɔ pe atɛnshɔn, ɛn disayd fɔ du sɔntin.
• Prɔblɛm dɛn na yu maynd: Pwɛl hat , wɔri , ɛn wae yu kin vɛks kin kam.

De impɔtant tin na dat, dɛn sayn ya nɔr kin rili klia fɔs. Yu kin tink se, “O, na jɔs taya.” Bɔt if dɛn de kam tranga smɔl smɔl as tɛm de go, yu fɔ wɔri.

Wetin mek PPMS de divɛlɔp? Wetin na di kɔz?

Sayɛnsman dɛn stil nɔ no di rayt tin we kin mek pɔsin gɛt MS (inklud PPMS), bɔt sɔm tin dɛn de we dɛn tink se kin mek i gɛt am:

1. Jεnεtik Prεdispכzishכn: dεn kin tink se sכm chenj dεm na wi jin dεm (DNA) kin mek wi gεt כtoimyun kכndishכn lεk MS (na sik we di imyun sistεm de atak di bכdi). Bɔt dis nɔ min se if yu gɛt MS, yu pikin dɛnsɛf go gɛt am. Di inflɛns we di jin dɛn gɛt pan MS nɔ big lɛk aw yu go tink. So, di risk fɔ mek pikin dɛn pas di sik nɔ kin bɔku.

2. Tin dɛm we de mek wi gɛt di envayrɔmɛnt: Sɔm risach dɔn sho se sɔm tin dɛm na di envayrɔmɛnt we wi de liv kin mek wi gɛt MS. Fɔ ɛgzampul:

• Vayral infεkshכn : Sכm vayral infεkshכn dεm, lεk di Epstein- Barr Virus (EBV), dεn de invεstigat bak fכ wan link bitwin MS εn sכm kayn infεkshכn dεm.
• Vitamin D dɛfisiɛns : Dɛn biliv bak se pipul dɛm wae gɛt smɔl vaytamɛn D frɔm san layt kin gɛt bɔrku risk fɔ gɛt MS.
• Smok: Pipul wae de smok kin gɛt bɔrku risk fɔ gɛt MS ɛn dɛn kin gɛt dis sik kwik kwik wan.

3. di imyun sistεm fכ wok: sכm kayn we, dεn jεnεtik εn invayroment fכs dεm de kam togεda fכ mek sכmtin we rכng wit di imyun sistεm. Na dat mek i kin bigin fɔ atak wi yon nervɔs sistɛm.

Fɔ tɔk am simpul wan, PPMS nɔto sik we wan kɔz kin kam wit. Bɔku tin dɛn we dɛn jɔyn togɛda kin mek i apin.

Us ɔda kɔmplikeshɔn dɛn kin apin bikɔs ɔf PPMS?

As di PPMS simptom dεm de go bifo, כda prכblεm εn kכmplikεshכn dεm kin kam. Sɔm ɛgzampul dɛn na:

• di mכsul dεm we de stiff (spasticity): Dis kin mek yu fil pen bכku εn i kin at fכ muv.
• Risk fɔ lɔs yu yay kɔmplit wan (rare).
• Di prɔblɛm dɛn we kin mek yu nɔ ebul fɔ kɔntrol di blad we de wɔs: Dis kin mek yu gɛt infekshɔn na yu urinary tract bɔku tɛm.
• I de mek pɔsin nɔ ebul fɔ du mami ɛn dadi biznɛs di we aw Gɔd nɔ want.
• Fɔ mɛmba mɔ ɛn tink gud wan.
• Mental wɛl bɔdi prɔblɛm: Kɔndishɔn lɛk pwɛl hat ɛn wɔri kin wɔs.
• Fɔ fɔdɔm bɔku tɛm ɛn fɔ gɛt injury we kin apin lɛk fɔ brok brok.
• Prɛshɔn sores we kin kam bikɔs yu spɛn tumɔs tɛm na bed.
• Risk fɔ gɛt infɛkshɔn na di say we yu de blo: Ɛspɛshali we di sik rili bad.

Aw dɛn kin no PPMS? (Diagnosis) .

Nɔ wan tɛst nɔ de we go ebul fɔ no if pɔsin gɛt PPMS. Yu dɔktɔ go tek tɛm tink bɔt yu sik dɛn, yu mɛdikal istri, yu bɔdi ɛgzam, ɛn sɔm ɔda spɛshal tɛst dɛm, ɛn afta dat i go kam fɔ no se "dis kin bi PPMS."

Na sɔm pan di tɛst dɛm we dɛn kin du fɔ dis:

1. MRI (Magnetic Resonance Imaging): Dis na di men tɛst we dɛn kin yuz fɔ no if pɔsin gɛt MS. I kin luk fɔ damej (lɛsin) na di bren ɛn spɛshal kɔd we MS kin mek. Insay PPMS, di patɛn fɔ dɛn lɛsin ya ɛn aw dɛn kin chenj as tɛm de go impɔtant.

2. lכmba pankshכn (dεn kכl am bak Spinal Tap): Dis involv fכ tek sכm sכm sכm sכm sכm sכm sכm sכm sεribrospεnal fכluid (CSF) frכm yu lכw bכk. dεn de egzamin dis fכs fכ si if εni chenj dεm de we spεshal fכ MS, lεk di protin dεm we dεn kכl oligoklonal bכnd dεm. Dɛn tin ya nɔto fɔ MS nɔmɔ, bɔt dɛn kin bi sayn fɔ inflamɛns na di bren ɔ spɛshal kɔd.

3. Blɔd tɛst: Dɛn tin ya kin ɛp fɔ mek shɔ se yu nɔ gɛt ɔda tin dɛn we kin mek yu gɛt sayn dɛn we fiba MS.

4. Evoked Potential Studies: dεn ya de mכsu di spid we ilektrikal signal dεm de travul tru di nεv sεstem. We MS dɔn pwɛl di nerv dɛn, di spid we dɛn signal ya de travul kin slo.

5. Optical Coherence Tomography (OCT): Dis na ay skan we nɔ gɛt pen we kin chɛk fɔ si if di optik nɛv ɛn retina we de biɛn di yay dɔn pwɛl bikɔs ɔf MS.

Fɔ no if pɔsin gɛt PPMS, dɔktɔ dɛn kin tink bɔt aw di sik kin wɔs smɔl smɔl fɔ lɛk wan ia so ɛn sɔm patikyula tin dɛn kin de we dɛn de du MRI skan .

Na us ej PPMS kin apin?

Bɔrku pipul dɛn kin gɛt PPMS we dɛn ol 40 ɔ 50 ia. Dis na smɔl leta ej pas RRMS. Bɔt i kin apin pan ɛni ej, pan yɔŋ pipul dɛn ɛn big pipul dɛn.

Wetin na di tritmɛnt dɛm fɔ PPMS?

Tu men gol dɛn de fɔ trit PPMS:

1. Disease-Modifying Therapies (DMT): Dɛn tin ya kin tray fɔ slo di rit we di sik kin wɔs.

2. Simptom Management: Dis kin ɛp fɔ ridyus yu diskɔmfɔt ɛn impɔtant yu kwaliti fɔ liv.

Di tritmɛnt dɛn we de chenj di sik (DMT) .

Bɔku kayn DMT dɛn de fɔ RRMS, bɔt na smɔl nɔmba nɔmɔ de fɔ DMT dɛn we dɛn dɔn gri fɔ fɔ PPMS.

• Ɔkrɛlizumab (Okrɛvus®): .Dis na di men DMT we dɛn dɔn gri fɔ naw fɔ PPMS. Na drɔg we dɛn kin gi insay di bɛlɛ. Risach dɔn sho se dis mɛrɛsin kin ɛp to sɔm mak fɔ kɔntrol di wɔs we di sik dɛn kin wɔs pan di wan dɛn we gɛt PPMS.

Dɔktɔ dɛn biliv se PPMS nɔ kin afɛkt di imyun sistɛm inflamɛns pas RRMS, na dat mek DMT dɛn we de tɔch am nɔ kin wok bɛtɛ. Bɔt bɔku risach de go bifo bɔt MS, so i kin bi se mɔ tritmɛnt dɛn de fɔ PPMS tumara bambay.

Fɔ kɔntrol di simptom dɛm

Dis na rili impɔtant pat fɔ manej PPMS. Dis tritmɛnt na di patikyula sayn dɛm wae yu gɛt.

• Fizik Tɛrapi: Dis kin rili ɛp fɔ tin dɛm lɛk wae yu nɔr kin ebul fɔ waka, yu mɔsul dɛm kin stif, ɛn yu kin wik. Ɛksesaiz ɛn strɛch kin ɛp fɔ mek yu gɛt mɔ trɛnk, balans, ɛn ebul fɔ muv.
• Ɔkupeshɔn Tɛrapi: I de introduks tɛknik ɛn ikwipmɛnt fɔ ɛp pipul dɛn fɔ du ɛvride wok (e.g., drɛs, it, rayt) fɔ dɛnsɛf.
• Mɛrɛsin:
• Mɛrɛsin fɔ mek di mɔsul dɛn stif (spasticity).
• Mɛrɛsin fɔ taya.
• Mɛrɛsin fɔ prɔblɛm wit blad.
• Mɛrɛsin fɔ mɛn pen.
• Mɛrɛsin fɔ pwɛl hat ɔr wɔri.
• Spich Therapy: If yu gɛt prɔblɛm fɔ tɔk ɔ fɔ swɛla.
• Di tin dɛn we de ɛp yu fɔ muv: Yu kin nid tin dɛn lɛk ken, pɔsin we de waka, ɔ wilchia.

Yu dɔktɔ go ɛksplen di sayd ɛfɛkt dɛn we ɛni mɛrɛsin ɔ tritmɛnt kin gɛt bifo yu bigin am, so nɔ fred fɔ aks ɛni kwɛstyɔn we yu gɛt.

I gɛt we fɔ mek dɛn nɔ gɛt PPMS?

I sɔri fɔ no se, no we nɔ de fɔ mek dɛn nɔ gɛt MS (inklud PPMS) bikɔs dɛn stil nɔ no di rayt tin we mek i gɛt am.

Bɔt if yu gɛt MS, sɔm tin dɛn de we yu kin du fɔ ridyus di nɔmba fɔ di flare-up (`relapses` – pan ɔl we dɛn tin ya nɔ kin apin so ɔltɛm na PPMS) ɛn kɔntrol di rit we di sik kin wɔs:

• Fɔ tek di tritmɛnt dɛn we dɛn dɔn tɛl yu fɔ tek (espɛshali di DMT) jɔs lɛk aw dɔktɔ tɛl yu.
• Fɔ fala wɛlbɔdi layf (fɔ it fayn, fɔ slip fayn, fɔ du ɛksɛsayz).
• Nɔ smok atɔl.
• Tray fɔ ridyus strɛs as yu ebul.

Us kayn ɛkspiriɛns pɔrsin wae gɛt PPMS fɔ gɛt fɔ gɛt?

PPMS na wan sik wae nɔr de mɛn wae kin gɛt big impak pan yu ɛvride layf. As de sik de wɔs, yu kin nid fɔ mek sɔm chenj dɛn na yu layf fɔ protɛkt yusɛf ɛn fɔ avɔyd aksidɛnt.

Imajin, if i nɔ izi fɔ yu fɔ go waka fɔ yusɛf, yu nid fɔ tɔk to yu dɔktɔ bɔt sɔntin we yu go ebul fɔ muv lɛk wilchia. Tin dɛn lɛk dis kin at fɔ gri fɔs. Bɔt,Dɛn divays ya go ɛp yu fɔ wok smɔl mɔ fɔ yusɛf ɛn kip yu layf aktif.

As well as de physical effects of PPMS, liv wit dis krεse sik kin gɛt bɔrku impak bak pan yu mental hεlth. Na kɔmɔn tin fɔ gɛt filin fɔ fil bad, vɛks, nɔr gɛt op ɛn fɔ de yu wan. Sɔm pipul dɛn kin gɛt bɔku fridɔm we dɛn tɔk to pɔsin we sabi bɔt mental wɛlbɔdi biznɛs , lɛk pɔsin we de gi advays ɔ dɔktɔ we de mɛn pipul dɛn we gɛt sik dɛn we de ambɔg dɛn maynd. So, if yu fil se nid de, nɔ shem fɔ aks fɔ ɛp.

Mɛmba se, no mɛrɛsin nɔ de fɔ PPMS yet. Bɔt dɛn de du risach fɔ no mɔ bɔt am ɛn fɔ fɛn nyu tritmɛnt dɛn we go mek yu fil fayn. So nɔ giv ɔp fɔ gɛt op.

Aw kwik di PPMS simptom dɛm kin wɔs?

Dis na kwɛstyɔn we bɔku pipul dɛn kin aks. Bɔt ɔlman we gɛt PPMS kin ɛkspiriɛns am difrɛn we. Fɔ sɔm pipul dɛm, de sik kin wɔs smɔl smɔl, fɔ lɔng tɛm. Fɔ ɔda pipul dɛn, di sik kin wɔs kwik kwik wan.

I nɔ izi fɔ tɔk bɔt dis kɔrɛkt wan. If yu notis ɛni chenj we klia pan yu sik, ɔ if dɛn de wɔs kwik, mek shɔ se yu tɔk to yu dɔktɔ bɔt am wantɛm wantɛm.

Wetin na di layf we pɔsin we gɛt PPMS kin liv?

Dis na sɔntin bak we bɔku pipul dɛn kin fred. Bɔt, PPMS nɔ de afɛkt yu layf dairekt wan. Dat min se fɔ gɛt PPMS nɔ min se pɔsin in layf shɔt pas ɔda pipul dɛn.

Bɔt, siriɔs kɔmplikeshɔn dɛm fɔ di sik (e.g., siriɔs infɛkshɔn, prɔblɛm we kin kam we pɔsin de rɛst fɔ lɔng tɛm na bed) kin gɛt impak we kin mek pɔsin in layf de pan denja if dɛn nɔ manej am fayn. So, i rili impɔtant fɔ fala di advays we dɔktɔ gi yu ɛn tek kia ɔf yu wɛlbɔdi.

Ustɛm a fɔ go to dɔktɔ?

If yu gɛt PPMS, i impɔtant fɔ mek yu de chɛk yu mɛrɛsin ɔltɛm. Apat frɔm dat, go to dɔktɔ if yu:

• If yu PPMS simptom dɛm de wɔs ɛn de afɛkt yu ɛvride layf.
• If nyu, siriɔs prɔblɛm dɛn lɛk paralayz kin apin.
• If yu gɛt pen ɔ yu an ɛn fut dɛn we nɔ de dɔn , ɔ if i de bɔku.
• Bikɔs PPMS kin afɛkt yu balans ɛn kɔdineshɔn, if yu fɔdɔm ɛn wund yusɛf, go to dɔktɔ wantɛm wantɛm ɔ kɔl di imejensi savis.
• If di mɛrɛsin we yu de tek de mek yu gɛt sayd ɛfɛkt .
• If yu de fil bad na yu maynd (lɛk pwɛl hat, wɔri).

Us kwɛstyɔn dɛn a fɔ aks di dɔktɔ?

We yu go si dɔktɔ, i go fayn fɔ rayt di kwɛstyɔn dɛn we yu gɛt. Na sɔm ɛgzampul dɛn ya:

• A gɛt PPMS, ɔ ɔda kayn MS? Aw a go no fɔ tru?
• Aw a go ebul fɔ kɔntrol mi sik dɛn? Us patikyula tin dɛn a go du?
• Yu go rikomɛnd fyzikal tritmɛnt ɔ ɔkupeshɔn tɛrapi fɔ mi? Usay a go ebul fɔ gɛt dɛn savis dɛn de?
• Us mɛrɛsin dɛn yu kin rɛkɔmɛnd fɔ mi? Wetin na dɛn sayd ɛfɛkt dɛn? Aw lɔng a fɔ tek dɛn?
• A go nid fɔ yuz wilchia ɔ ɔda tin fɔ muv? If na so i bi, fɔ aw lɔng?
• A nid fɔ chenj di tin dɛn we a de it?
• Wetin a fɔ du fɔ kia fɔ mi maynd?

Faynal Mɛsej fɔ Tek-Hom

PPMS, lɛk ɔda kayn Multiple Sclerosis, na sik wae kin gɛt bɔrku impak pan yu layf. Na tru dat. Bɔt nɔ wɔri, nɔto yu wan de.

Mɛmba se, tritmɛnt ɛn we dɛn de we go ɛp fɔ mek yu sik nɔ go bifo kwik kwik wan ɛn fɔ mek yu liv bɛtɛ layf.

Fɔs, yu nɔ go notis bɔku sayn dɛn, bɔt as tɛm de go, dɛn kin bɔku. Yu kin ivin nid fɔ yuz tin dɛn lɛk wilchia fɔ ɛp yu fɔ go waka fɔ yusɛf. Nɔto di ɛnd fɔ di wɔl. Yu dɔktɔ, dɔktɔ we de mɛn yu bɔdi, ɛn ɔda pipul dɛn we de kia fɔ yu wɛlbɔdi biznɛs kin ɛp yu we yu de go. Dɛn kin ɛp yu fɔ kɔntrol yu sik ɛn gayd yu fɔ liv wɛl bɔdi ɛn aktif layf as yu ebul.

So, kɔntinyu fɔ tink gud wan. Gɛt di infɔmeshɔn. Aks kwɛstyɔn dɛn. Gɛt di ɛp we yu nid. Tɔk to yu fambul ɛn padi dɛn bɔt dis. Di sɔpɔt we dɛn go gi yu go mek yu gɛt bɔku trɛnk bak.