Dysphagia

Dysphagia and Myasthenia Gravis…

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remember about my dysphagia story, hazab nak menelan makanan or even air pun boleh tercekik. I hv been having that for 2 months lah, and alhamdulillah dah recovered wpun blum 100% but the percentage is getting better and better everyday.  So I had a follow up check up and the result of 2 blood tests came back (one was the one they sent to Australia, one was local).  Jadinya memanglah I have the dysphagia but also this Myasthenia Gravis. Boleh berlipat lidah nak menyebut.

Dalam bahasa lagi mudah nak memaham is muscle weakness, tu yang jadi dysphagia. Sort of lah.

So alhamdulillah dah better a bit, and also I met up my sinus Doctor and tak perlu do any procedures, coz the spray yang dia supplied sebelum ni helped me so well. All good.

I dont have to come back and if any of it datang balik, of cos ler kena pi revisit back the doctors la kan, which of cos tak nak dah. Berbulan turun naik hospital, eii idok la hakak dah nak do the same heh.

Can I selit tanya a bit, if you have the cordless vacuum cleaner, the best one yang mana you highly recommended sangat? Dyson (i have their normal vacuum ordy so the cordless one maybe at the last choice), how bout Morphy Richard or Electrolux or anything yang you rasa good to get? a cordless one yah, can please recommend? thanksss

Comment: 7

Mestinon Dragees!

This ubat is killing me softly!

I dah 2 hari diarrhea. not coz of the food but coz of ubat nih. Side effect lain itchy satu badan, pening2 pala, memuntah, and of cos toilet is my bestfren sangat.

First time doctor bagi ubat but mainly untuk  myasthenia gravis – yakni a condition causing abnormal weakness of certain muscles. Ini part of my dysphagia tu lah.

Ubat ni sangatlah strong super strong!! I was supposed to amik 2 times a day, but first day jer amik 2 kali, untuk day 2 aku amik sekali sahaja and day 3 dah stopped amik, tak sanggup jadi toilet guest (not just selang 2 jam, kadang2 lam sejam 2,3 kali kena masuk toilet). Memanglah doctor ada cakap the side effect ubat nih but i tak sangka lah pulak dia punya cirit sampai macam nih that bad. First day makan, start masuk toilet at 3am!!

N none stop, till today (as this entry is up masih ada sesikit lagi lar) but alhamdulillah i think my dysphagia dah go to the end stage dah kot. Macam dah sangat2 berkurangan.

Though kena kot perabihkan ubat nih, eh banyak sangat lagi stock up nya, idok le akak sanggup nak menahan cirit birit lagi dah. Gigil2 naik bola roma akak dik oi ngan ubat ni punya penangan ciritnya. So I tak nak lah sambung, tak kabau pun kat doctor tu coz malas nak berulang pi spital tuh, tengok ler aritu punya cite aku hidup kat hospital camne, sehari suntuk turun naik tunggu tunggu tunggu.

Even semalam pun I was supposed to do one of the check ups, I had to reschedule, badan dok mencirit takkan nak kuor masuk tunggu eii tak perlah. Sambung lain minggu.

Now i nak pi berjalan2, berleisure2….

Happy weekends gang!

Comment: 4

3 doctors in a day X 2!

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sekuat mana pun supermak, penat gak if dah kulu kilir walaupun tempat tu beraircond. It s all dalam satu combo, the body the mind the health.

i was supposed to meet my 2 doctors for my sinus and dysphagia issue. Very straight forward which I assume by noon patutnya dah settled. So when I got there, macam biasa, register dulu, all planned and ikut as per jaduallah.

but first appointment starts lambat, i think lam 30min delayed. So 2 kali menunggu, while registration and di klinik atas. Bila dah jumpa first doctor, hah…the drama begins. He wants me to do the xray. Jadi after meeting him tu ai lari turun bawah pi buat xray, bukan boleh terus dapat slot, kena tunggu jugak, lam 15min or so. Then buat xray, tukar baju yadayada, naik balik lari to the clinic and kena lagi menunggu for another 20min. I dah missed my 2nd appointment with another doctor.

So nurse dah kabaukan (doctor gak suruh) yang i kena datang lambat sikit for the 2nd appointment.

Masuk balik jumpa first doctor tengok hasil xray (i didnt wait for the copy, takpelah dalam system ada, malas heh nak tetunggu). So memang obviously for something else. Remember about my blood yang sent to Melbourne? Itu baru half way came back, oi mak, stress haku lah.

kena lagi buat blood test, n docking ubat, tidak ler kuasa hakak nak menunggu dik oit, ubat kemudian, i nak pi jumpa 2nd doctor dulu. Met the 2nd doctor for sinus, poppak kena buat lagi ctscan pulak, omang!!!

Turun balik, buat scan, bukan gak terus dpt slot macam biasa, tunggu at least 15min. Abis scan, naik balik pi ngamik docking ubat yang first doctor tuh, and turun amik ubat dulu. Tunggu lagi, ni lam 5-10min, sambil tunggu tu beratur kat stall makan nak tapau coz i baru terasa lapar but baru nak bayau, number pulak naik, tinggalkan je food dulu, pi amik ubat, and sambung balik beratur.

Kemudian pi balik registration counter, buat satu lagi registration coz i kena jumpa the 3rd doctor of the day, ini reference dari first doctor.

so tunggu lagi 15-20min kot, siap registered, lari balik opis. Bebusuk min time menunggu mostly memang 15min lah, paling lama tu lam 40min.

Ngam2 abis tu aku lari plak balik opis, tapi memang kejap, about 15min je plus 15min pergi balik (tau lah bus van tourists kat depan KLCC tu double park coz orang nak berdiri amik gambar backgroundkan KLCC, tak pepasal jadi 1 lane jer!).

So rushed balik pi hosital, ngam2 depan pintu clinic dah 2.30pm! aku rasa aku memang termengah sweating sangat hari tu heh. Spent ngan doctor sorang ni (my first time with him), for lama gak.

Sambil tu the first doctor punya staff nurse dok riuh called banyak kali suh buat blood test (ai ada datang balik in between but system depa down bagai ke hapa so aku tak nak lah menunggu, a such waste of time), jadi bila habis ngan 3rd doctor ni, kat situ gak buat amik blood.

Habis je, lari pulak pi naik atas untuk jumpa the doctor no 2 yang pagi tu, coz he nak go through ngan ctscan sebelum tu. Habis ngan dia, tunggu amik docking ubat, ya allah pun lama jugak! orangnya aku ngan arabian jer but lama benau, sampai aku dah bebangun tanya. Dapat docking tu, pergi turun (oh btw, most jalan turun naik ni ai pakai tangga, lambat nak tunggu lift!) so pi balik amik docking ubat yang satu lagi klinik, combinedkan dedua.

turunnnnnnnnnnnnnn balik pi amik number ubat, and tunggu lagik, meanwhile nasi yang aku beli dari tengahari langsung tak berusik, bawak kulu kilir! Yang ni je semua dah kol 5 rasanya.

Habis settled semua, aku dok dalam kereta, makan kuih seketul (and facetime with my laki) to express my letihness hoih!! In between satu hari kejadian ni bear in mind i have to answer all emails also calls, ada gak call yang ‘kak saya dah depan rumah akak nih, nak kena tekan doorbell ke kak, ada orang kat rumah ke kak’ adoiii ko tekan je lah doorbell tu ada le laki aku kuor  nanti, udahlah masa tu akak tengah buat blow blow test ngan staff nurse. Calls yang related to blog nak engage bagai sume aku dik sok boleh dik, akak ngah kekangan masa sangat nih.

tu yang balik tak masak langsung, jadi aku ajar laki aku cara masak sardin untuk pagi ni nya menu (i usually masak malamnya so anak2 boleh bawak bekal lauk nasi bagai to school, also for their lunch the next day). Takpelah sardines je lah level korang hari ni coz mak ko dah tepeleot benau.

Amik Zeeshan pun lambat sikit, coz aku balik sampai rumah ngam2 pun bukak balik laptop and kerojer jap.

Start le makan ubat bagai.

So apapun, sebenaunya the 3rd doctor insist nak admit kak merah ko nih, soonest by esok (yakni today) at least for 2-3 days. Oh my idok le akak…………lagi serabut kang aku dok spital pikirkan hal rumah. So dia bagi ubat segala and i have to come back again by this week to see him.

Actually ada lagi drama2nya…but nak type pun tak sanggup. xray copy ni pun yang from the ctscan, tetiba je dah kat tangan akak staff nurse sorang tu bagi. yang satu lagi xray copy tu abaikanlah, maleh akak nak pi tuntut.

Aku rasa pasnih aku kena heret laki aku ikut sama lah so kita boleh bebagi tugas, specially part2 isi form part2 yang nak kena beratur amik ubat tunggu docking bagai nih, aku jadi stress betul ngan semua2 nih. Ini memang kita one man show but tu lah yang patutnya half day punya keje jadi 1 day aku dok spital, with 30min opis keje pi balik.

Yelah, hari ni memang my veryyyyyyyyyyyyyyyy long day, tak menyangkan akan jadi begini capeknya but itulah dramanya.

Oh my dysphagia progress, ada berkurangan. But lesser by 10%lah, at least ada lah dropnya gak. Tapi ada issue lain plak.  On the health cerita, entry lain lah, ini untuk the dramatic Monday blues…

 

Comment: 2

My dysphagia story…

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Hi hello assalamualaikum…

ada ke orang baca blog akak lagi ni? hiks…

ai nak cerita about my dysphagia. Itu le penyakit yang akak dok hadap sejak now dah 4 weeks lah.  Dysphagia is difficulty or discomfort in swallowing, as a symptom of disease. Kepayahan dan kesiksaan untuk menelan makanan mahupun minuman. Food tu logic le gakkan, ini air pun susah. Kesian kan hehehee….

How why? Kita go to that lelater lah coz I m still on going treatment lagik gak. Apapun bila recall balik it was during the bulan puasa, sebab kita puasa so akak takde la bother sangat, makan minum pun masa sahur and berbuka tu kan, but dah memang terasa sangat masa tu. Kalau makan if 10 suap le let say, 2,3 kali suap akak tercekik. Kalau kita tercekik pun lawannya ngan air kan, kekdahnya ngan air pun tercekik gak.

Jadi masuk minggu kedua untuk raya tu, lagi worst lah, masa tu lagi terasanya. Jadi abis cuti raya, first day kerja tu gak petangnya akak pi clinic. Doctor kat clinic macam very sure akak dah kena dysphagia but to confirm tu akak kena pergi specialist and hospital ler kan.

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So the next day nya, masa kat opis my luck dapat gak lah the slot noon tu jugak at Prince Court. Lari register bagai jumpa Doctor and kena buat blood test bagai. Tunggu setengah jam, depa couldnt get the right tube (for special case), so kena balik and depa suh datang semula at 3pm. Sambung lari kerja balik opis and bila datang balik terus buat blood test. The next one terus kena pergi buat nerve conduction test, this was about 21/2 jam. Omang sakitnya lahai, bila tang kuasa tinggi power letrik maknek tu ler…

Nerve conduction test is lso called a nerve conduction velocity (NCV) test–is a measurement of the speed of conduction of an electrical impulse through a nerve. NCS can determine nerve damage and destruction. During the test, the nerve is stimulated, usually with surface electrode patches attached to the skin.

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Akak pernah buat ni dulu tapi kat muka, long time ago bout 6 years ago dululah, tapi this time around kena buat kat whole badan…ada part tu sampai terlelap tapi hujung2nya sakittt…sampai akak dok cakap dik dahlah dik, tak tahan…2 orang lab ladies tu pun sian gak tengok but no choice ler kan.

Habis sudah tu, akak kena pi satu lagi bahagian yang therapy kat bawah tu, buat booking slot untuk the next day nya. Ingatkan nak habiskan hari tu but jam pun dah 5 lebih so kena tomorrownya, akak beli dulu all these kinds of foods, hard and moist and drinks untuk bawak jumpa the Speech therapy. Bukanler jumpa speech ni nak suh akak belajar bercakap pulak bagai tapi dia nak tengok the digestion bagai…so kena buat semua test2 ni dulu baru Doctor leh go further.

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Sushi, kuih raya, fruits salad and ice lemon tea ni antara yang akak bawak lah untuk dia tengok camne susah ke hazab akak menelan. After few tests and memakan minum she confirmed that memang akak ada part of dysphagia and before that I have to meet Dr Kuljit pulak. He s an ENT doctor, he used to look after my sinus, pun 6 years ago.

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oh masa lunch break tu jugak akak dapat lari tengok my bff’s baby, kat parking Prince Court kebetulan anak sulungnya ngah check up ngan doctor hahaha so kita dating dalam kereta jer…lawanya sedap bau baby, Hannah Tasneem.

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habis selesai episode tu sume untuk 2 hari, jadi takde perubahan kan. So the next Mondaynya akak kena pergi lagi. Pepagik dah lari pi kerja dulu, then rushed pergi hospital, buat registration for 2 doctors, then pergi jumpa my 1st doctor ENT. Sesambil tu akak punya sinus pun menjadi balik yelah dulu pun buat baloon sinuplasty dah over 6 years so memang macam kembali semula sangat. From meeting Doctor Kuljit, for my sinus is fine, tu akak dapat nasal spray lah but related to dysphagia, he wants me to go and meet Datuk Dr Ryan pulak.

Ye gitu ko kan…berpass2 dah akak merah ko ni hahahah…from one doctor to another katanya.

Went down dulu, ada masa akak pergi amik ubat dulu (menunggu dock amik ubat pun lama haish!!), pastu terus akak register untuk slot with Datuk Dr Ryan (i got the slot untuk petang tu jugak). Alang2 tu yang akak register, tu belum lagi nak cakap nak dapat GL bagai segala, hish tertekan kengkadang. Habis je dapat ubat, terus rushed back pi jumpa balik Doctor Hamidon.

My nerve test punya result memang ada ‘goyang sikit’…sikit je lah. My blood test, can only come back to me after 3 weeks, depa had to send to Australia. begitu sekali yek.

Settled sini ngam2 lunch break, lari kejap around there amik some stuff and balik opis to have my late lunch with my bff.

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Pompuan yang hanya aku boleh jumpa 2,3 kali setahun sahaja…wanted to take leave to spend time with her but my schedule tak boleh sangat so late lunch pun jadilah. I got a birthday present from her, Dior lipstick and Dior highlight powder. Both products memang so miracle, super best. Thank you Ima love u. Then akak abis makan tu terus sambung naik kerja, but turun balik at 3pm coz I have an appointment at 330pm tu kan.

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heret pompuan ni sama, she temankan at the hospital. Tunggu agak lama gak lah, biasa ler ada doctor yang on time tengok kes ada doctor kita takde luck, memang kena tunggu lama. So from here Datuk Dr Ryan confirms that aku kena buat endoscopy.

sigh…yang tu ok ler lagik. ada satu lagi option dia nak buat, tu nangis akak kang…

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Jadi endoscopy session kena buat the next Wednesday nya, tak boleh ler tunggu lagi, kang lagi lambat banyak dramanya. Meanwhile no changes on my dysphagia, masih sama. So untuk pertama kalinya suami temankan (all these while memang aku pergi sendiri jer) ini pun aku tak suruh pun but dia offered himself hahahaha gamaknya kang balik dari spital takut aku weng weng kot.

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What is endoscopy? Endoscopy is a nonsurgical procedure used to examine a person’s digestive tract. Using an endoscope, a flexible tube with a light and camera attached to it, your doctor can view pictures of your digestive tract on a color TV monitor.

Hari tu akak patutnya ada divisional punya raya but for the first time kena skip, dah berangan nak pakai baju ngengelip ler ngan lashes melentik hahaha takpe ler, health lagi important kan. Pagi tu masuk, RD tunggu luar, so expected lam 2 1/2 jam patut akak dah settled le kan and dah boleh bangun. Tak sedor hapa pun. Full bius dia bagik, abis tu dah dia rodok lam tekak bagai kan.

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Sedar pun bila laki aku dok tetiba dah kejut, terus makan, staff nurse ada bagi sandwich and air coz akak kena puasa dari malamnya tu kan. Sama je siksa nak menelan hahaha….so lepas tu jumpa Doctor and he couldnt find anything through endoscopy. But he took some samples ler and akak kena datang balik on Saturday.

Dapek medical leave terus on that day and balik rumah buat keje, masak bagai segala. My last meal that day was at 4ish pm gitu, and esoknya akak boleh rasa lagi the food dok kat hujung tekak. Macam tu le setiap hari masalah akak, liquid je went down tapi for food kena flush ngan air pun siksa. Even minum air pun walaupun dia turun tapi hazab sangat…..

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My session was on Saturday morning jadi tak nak le gak bawak kids, pun husband temakan. Ingatkan kena pergi sorang which I dont mind gak hahaha but dah dia nak gi sama. Yelah kita biasa independent kan.

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lamo gak menunggu, pakcik sebelah dok main chess online, melentok2 sedap ke main….dapat je slot ngan Dr Ryan, nothing can be found from the samples (which is very good news lah) so he wants me to do something yang 2nd option akak cakap tu. Yang tu akak kena awake and sedar untuk dia masukkan the whatever dalam tekak kerongkong akak untuk tengok akak swallow. Which my answer is big no ler kan. Sedangkan ubat induce dulu pun Prof Zainul masukkan kat bawah tu pun akak dah sepak dia. Hahahaha….

Tapi tak major ler, if I dont want, is fine coz from the sample dia tak jumpa apa. Which is memang related to nerve gak lah, dan bermakna kena go back to my first doctor. My frens sume suh buat jer, amboi bukak tekak ko yang kena rodok bolehlah cakap senang.

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Hari tu gak, akak mintak slot untuk Prof Hamidon and alhamdulillah dapat. He showed again his study on one Malay girl (she was 19yo back then), can read through link here http://www.ncbi.nlm.nih.gov/pubmed/16898323

An acute pharyngeal-cervical-brachial (PCB) variant of Guillain-Barre syndrome presenting with isolated bulbar palsy.

Abstract

Acute Guillain-Barre syndrome (GBS) is characterized by an acute onset of limb weakness and areflexia. There are a few rare variants that have been described and one of them is the pharyngeal-cervical-brachial (PCB) variant (oropharynx, neck, and proximal upper limb muscles). However, in this patient, the only presentation was bulbar involvement with fast recovery within days. This is likely to be the milder form of PCB that has rarely been described before. A 19-year-old Malay lady presented with progressive dysphagia associated with nasal voice for one week duration. There was no limb weakness. Examination showed generalized areflexia. Pharyngeal and palatal muscles were markedly weak. Cerebrospinal fluid (CSF) examination showed raised protein level. Nerve conduction studies revealed generalized demyelinating motor polyneuropathy consistent with GBS. The patient fully recovered within three days and was discharged well.

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This is Prof Dr Hamidon Basri. So to conclude. there s no medicine for my dysphagia or whatever it is called. Why? got to wait for my blood test from Aussie tu. How? pun the same answer. My plato skang is masih lagi status yang sama. Already 4 weeks dah kan. I m seeing him again and Dr Kuljit for sambungan sejarah2 dysphagia akak lah ngan sinus (ini dah alang2 sekali jalan). Jadi tiada ubat, kena cuba baik dengan sendirinya. Tu pasalnya walaupun sedang gumbira riang ria hari raya, bila tang makan tu kesiksaan sangat.

I dah tak makan while driving anymore coz takut kena attack lagi, but bila makan pun, air is a must wajib ada. I dah tau a bit how to control untuk tak nak tercekik or sort of, ada le caranya but itu bila kena attack ler, kalau tak nak kena tu pun boleh but sangat menyusahkan dan melambat heh. Family n kenkawan pun siksa tengok aku makan hahaha tu ler orang kata kang lagi senang diet. Kononnya kan, ada le kurang sikit berat tu turun but tidaklah mendadak.  My tekak memang rasa full (coz the food tak pernah nak turun habis), but my perut akan lapar termasuk jugak my mind so itu sume mainan ler. Lagipun manusia kena le makan.

I hope plato tu akan turun coz ari tu janji Doctor patutnya after 3rd week dah stabil semula but ni dah 4th week kan. Masuk minggu ke 6 aku dah kena jumpa semula, jadi I shall update back on my dysphagia story, insyallah the next time. My case is very rare and i m the chosen one. Orang dengar pun macam kelakar but tu lah, Allah pilih saya coz saya kan istimewa :) .

Comment: 5