An uncommon medical illness name that I have not come across before until recently when my mum’s left eyelid started to droop in Dec 2008.
For the past few weeks before Feb 2009, I have been taking leave to accompany my mum for the medical appointment and after the follow ups and testing at Alexandra Hospital, the doctor concluded that my mum is affected by this illness called Myasthenia Gravis (aka MG in short).
Myasthenia Gravis is an autoimmune disease whereby the immune system which normally protects the body mistakenly attacks itself by the abnormal antibodies. As such it caused a defect in the transmission of nerve impulses to the muscle. There is no known cure for this illness but there are treatments that help to control and improve the condition.
The main symptoms of the illness include:
Drooping eyelids
Weakness in eye muscle
Double vision
Weakness of arms and leg muscle
Neck and limb movement affected
Difficulties in breathing, speakingm chewing and swallowing
More detail info on the illness on MG can be found in the following website
At first, medicine was given to my mum to help improve her condition; however there was not much improve at all. After sequence follow up with a CT scan, a thymoma (tumor) was found in my mum upper chest bone (only 10 to 15% MG patients have this) and there is a need to remove it by a surgery call Thymectomy to help improve the condition, as it was believe that the tumor may also be a factor causing the problem.
After knowing about the tumor, the AH doctor wrote a recommendation letter for us to visit the doctor at NUH for the surgery. Unfortunately my mum was not able have the surgery for the time being as her condition started to weaken (neck, arm and leg weakening during the 2nd visit at NUH on 10 Feb 2009 and the neurology doctor recommended my mum to be admitted in hospital for treatment.
My mum was first stationed in high dependency unit but was transferred to the ICU after she has some difficulties in her breathing. Since then she has been staying in ICU for almost 3 weeks with different treatments carried out for her from a 5 cycles of IVIG treatment, plasma exchange treatment. However there was not much improvement shown in her…. Very hard on her with so many tubes connected to her, lying on the bed without able to get up on her own… Hai… Almost every night, I would be visiting her after work with my sis in law and brother and we are also feeling worried for her as we cannot see much improvement on her. Till today, she has been staying in the hospital for almost 1 month already...
Until recently, the doctor recommended opening a small hole in her neck to insert a tube to help improve her breathing, then we saw some improvement on her and she is currently transferred to the normal ward for further observation. Really hope everything would be fine for her and her condition can be further improved before she can be discharged...
However after discharge, she still needs to go for the surgery (Thymectomy) to remove the tumor when her condition is more stable. That is another area that we are concerned and worried of as it is considered a major surgery… It is really tough for her staying in ICU for so long with a period she was quite depressed when there was no improvement after the 2 different treatments, but she is still going strong to move out from the ICU to the normal ward. Hope everything goes on smoothly for her from now on till after the surgery completed.
29 comments:
Hi....Chanced upon your blog...I read with sadden for your mum's ordeal. By the way, this illness is very new to me and I hope your mum will pull through this ordeal. From what I have read through the URL...It's a blessing that this illness is not life threatening. As for the remover of the chest bone, I wonder is there a full-proof for it.Can you keep the reader posted about your mum's condition now? Should have been discharged by now right? Let's pray that everything will be fine.
Hi Annonymous. Thanks for your concern.
This illness can be dangerous if no proper treatment/medication is given, especially when the breathing is affected and muscle weakening.
Currently, my mum is improving and has discharged, but temporarily transfered to another hospital for stablizing her condition.
The surgery would be carried out later and advised by the doctor.
Oh great! Relief to hear that. But also mean that she has to stay in a recuperation hospital forever for special assistant? Hope this will not be a case for her treatment. And now don't mind if I ask she can walk, speak and eat normally without assistant?
Currently staying in the recuperation hosptial for the time being, once her condition gets better, she can go home. Now she can walk with minor assistant, normaly for speaking and eating.
btw, dont mind if u leave a name? a nickname is also fine. "Anonymous" seems a bit mystery.
Call me hweijuan if you want to. `smile
Glad to hear that her condition has improved and have fully recovered to her original ownself. Can feel your joy too.
But did she know that she had to go through another round of major operation to remove the tumour or did you hide it from her?
Dun mind if i ask how old is your mommy?
I am curious that did your mom feel funny and strange for having to stay in the hospital for such a long period. Did she feel impatient and ask why happen to her condition. cos i know older chinese people do not like to stay in hospital for such a long period. They will tend to ask to go home and have a rest.
Another thing is that she has been staying in the hospital for almost three mths and i hope that she will be able to use medisave to pay for the bill or claim from the insurance groups. If not you and your families will have to pay a very high amt of bill. as you know that a lot of ppl knows that we cannot fell sick in Singapore. If not the medical bill will be very xiong.
But to me the most important thing is not about how much you have to pay. More important is to treat and cure the illness.
That will be the most happiest thing in life.
Am i right?
Hi Hwei Juan,
Thanks. Ü
condition improved but not to the original form. Yah. She knows about the surgery. She was supposed to carry out the surgery, but condition weakened that time, so surgery postponed till her condition is better and stabilise.
She is 59. Going to 60.
Yes. She did feel impatient during the time when there is no improvement durign the 1st few treatment. Yes. a normal person like us for instance staying in hospital for so long also get sick of it, so no need to mention for old people.
Yes. currently also using medisave to pay bill, but there is a limit too.
Correct. Most importantly is the patient gets well from the illness. Everybody only have 1 life to live, so must treasure it. :)
But you have mentioned in your blog that this illness only happen in younger women?
But anyway the medical bill for staying in the hospital is just peanuts. I think the surgery fee will be more expensive than the hospital staying. How much is the surgical fee by the way? 15 to 20k?
And also how many more days does she needs to stay in the hospital before she is discharge? As you have mentioned she is back to her normal self now, but why don't you ask the hospital to release her first? She will feel tired of staying there you know.So that you and your family or wife can take care of her better.
That is what is stated in the website. But it can also happen to anyone at any age.
The surgery cost not known yet because it is not carried out yet. Only when the surgery is confirmed, then they will let us know the cost.
She is currently improving but not back to the original form. Long term medicine is still needed to control the illness.
The hosptial informed us that my mum will be discharged from the hospital this friday. Follow up medical appt with the doctor is needed later on and also for the surgery.
Btw. I am not married yet.
Oh sorry I thought your have married.
So glad to hear that your mommy can be discharged. I guess you will be in joy and ever thought of giving her a welcome back party? Think you should.
And what do you mean not back to her original form? As in can't speak clearly, eat properly and can't walk steadily ah?
But what about her drooping eyelid? Back to normal already or still drooping?
You mentioned that Doc open up a hole for her to breath right? I ever saw ppl like like that. But after ok already. The doc will stitch back your mommy's neck hole already? But the neck will leave a hole mark. But I don't know if you are referring to those kind of hole.
By the way, who will be her caregiver when she is back? Or anybody at home including you is not working to take good care on her? I guess she needs special case as you mentioned that she has another round of op.
Yah. She is happy to be back home. Ü
Not back to her original form means she is somemore a bit weaker due to this illness and her left eyelid will be smaller than the right eyelid. speaking, eating and walking more of less improve.
Yah. open a hole in her throat for breathing, but now removed already and the hole is covered up. Yes. a small hole mark can be seem there.
currently she can still be able to move around at home. my sis in law maid will take care of her when necessary. I am working.
That's good that at least got someone to take care of her.Cos at least someone can take note of such patient to prevent them from falling as their muscle is not as strong as before.
And also for cases like MG, does the patient need to avoid any food?
Like cannot eat this and cannot eat that?
As for the eyelid, speaking,eating and walking will be back to oringal or not for such MG patient? Or it is the best can improve to a max of 80 or 90 percent?
Oh yes do they have to followup with physiotherapy to help them move their limbs and mouth movement?
i did ask the doctor before, but MG patient still can eat the usual food as per normal.
speaking, eating and walking can be improve further. eyelid seems like can only be controlled by the medicine.
When she is in hospital, they did want her to do some exercise for strengthen herself in movement. Not really having follow up on that.
Thanks for all the info becos I was thinking of having a career switch to become a nurse.
To help those in need is my interest.
That is why I have the interest to understand this.
Oic. It is great to really help others who seriously needs help. All the best.
btw, what is your occupation currently before you thinking of switching line?
I am in chemist field now. Hoping that I can help to fill the gap in this dumping nursing industry. But I have to study in a poly for another two yrs to become a registered nurse.
What is your profession btw?
Hi, btw can a patient with MG do chores like sweeping the floor, washing the clothes and cooking?
And also can they walk and climb and down the stair without any aid?
And what about singing for leisure?
Oic. okay. somehow it is a bit of related. I think have to study in Nanyang Poly for the nursing course correct.
my profession currently is civil and structural engineer.
MG patient can do their normal routine is their illness is well controlled by the medicine. But it would be best to reduce the heavy workload of housework to be done by them.
This is specially important after the removal of the thymoma in MG patient. They cannot carry heavy stuff after the operation and need to rest well. You can read more from the URL that I provided in my blog or search for more info from the web.
Intially during the Rehabilitation at the hospital, the staff there will accomppany my mum when she is doing your stair climbing exercise. It will be good to have someone ard to watch closely, but it can be independent also.
Arh.. Singing not very sure, but shd not be a problem. But then after my mum's throat open a hole for breathing and heal after that. Her voice is not as loud as before.
Oic. Ya I think to go to the job fair. And now nursing is a very respected job and also the pay is high. At least I can do meaningful things to the ppl in need.
Your job requires you to go and stand at the sites just to get "free" sun tanning huh?
And what do you do most about your job? I wonder how the crane in a contruction site can extend taller and higher when the building is progressing to a higher level. I have never see how they do the extension of the crane before.
That's fast. You mum had already removed her tumour. So do update the reader about her progress on the removal of the tumour ok?
Speaking about removing the hole from the throat. Have you ever asked the doctor why is it affecting the volume of her voice? Can the volume of her voice go back to it oringinal loudness or cannot be improved anymore?
Another curious thing is that how did the doctor manage to dig a hole on her throat? Will the patient feel painful after the throat has been slit with a hole? Can the patient still TALK and EAT with the hole on his throat?
By the way, the slicing of the throat was done through operation under unconcious condition?
And also how did the doctor seal the hole on the throat? By stitching up or use some part of the skin (e.g from the limb) to cut and patch it on the throat?
This is very interesting to me.
ok. Most of the nurses that I saw in NUH and AMK hospital were mostly foreigers, but can still find some singaporean.
Then will depends. There is actually 2 types for the job.
First type is working at site and the 2nd one is working in design office (but from time to time needs to attend site mtg if needed)
My job requires me to design the structure to be built and also checking other companys'design work.
Oic. For me, I also have not seen the tower crane been stacked up before since don't really have the chance, but they are assembled in stages. you can view it from this website below for more detail/explanation and the photos.
http://science.howstuffworks.com/tower-crane.htm/printable
No. not yet. My mum has not gone for the opt yet. Most likely in a few months time after a re-scanning of the tumour and also depends on her overall condition to be more stable b4 the doctor allows the opt.
Have not really asked abt that. But when the
hole was opened on her throat to insert tube for breathing, she cannot speak at all totally.
its only after they removed the tube and the hole healed slower, then her voice started to come back, but not to the original loudness.
the doctor opened the hole on the throat through a minor surgery in the ICU itself under concious condition if i did not remembered wrongly. But I think pain-killer injection was given b4 the surgery.
Patient cannot talk and eat when hole opened on throat. only can tube feeding from the nose into the stomach.
OIC. Open the hole in concious condition. OH MY GOD! so scary.
So now she can eat and walk with normal speak? Yes you said that chewing and speaking is a problem for MG patient. And how is her chewing and speaking now?
At least she can eat and speak now. Then not too bad. But during that period whereby she cannot speak and eat, I believe she will not be in a good mood. My heart feel pain for her. I can understand her situation. Then at that time how did your mom express herself when she cannot speak and eat??
Just wondering how the hole can heal by itself when the doc did not the a new skin to patch back.
Actually I am in a struggle to whether want to choose nursing as my long term career.
What is your impression of a nurse?
Her chewing and speaking is much more better.
Yes. during that time when she is not able to speak and eat, she felt quite miserable. She can only express herself by hand signal, facial expression and writing chinese note for us to read on pieces of papers.
When the tube is removed from her throat, it is still covered with the bandage, so I did not manage to see how it was healed.
You can try to ask around your friends or get opinion/advise from your seniors or whoever u know working in hospital etc to find out more first about nursing. u can try searching in Nanyang Poly website to find out more abt the nursing course too.
But ultimately, you need to have the passion and positive attitude to be a nurse if working a long term career.
For me, I think that the nurse is acting as a very important role too other than the doctors, as they must be alert, patient and caring for the patients in need, epecially for those in ICU cases.
Without them, it is not possible for the doctor to take care of the patients themselves only. Everyone plays an important part. Other people may think that nurse job is tiring, a lot of work to do, working long hours, even night shift.
Most importantly, it depends on your own decision and direction on where you are heading to and aiming at.
Btw, i have post a blog post on how tower crane works & assembly/dismantle. See URL below:
http://kiatsans.blogspot.com/2009/04/how-tower-crane-works-and.html
Ok thanks for the advice.
Really envy your go kart in Malaysia.
How many Km away from Tebrau Jusco city?
I read that you have a friend went back to Singapore as he also got some emergency thing to attend to. What happen to your friend? So urgent that he got to rush back to Singapore? What a pity. He will envy your go kart ride.
But I am curious that you can still enjoy to go for your go kart when your mom is sick and need someone to show care and concern. Don't your mum feel sad that you left for your go kart? What if she fell down and you are so far away to help..
I am not very sure how many km from Tebrau City-Jusco, however it did takes quite a while to reach the venue since there is a stretch of road leading to the go kart club that is uneven and "WuLu". That's why the driver drive slowly.
Yah, She needs to rush back home for family emergency matter. It is not convenient for me to mention it over here. Anyway, you can already make a guss about that.
Yah. I know about that. I did mentioned to her that I am going JB for 1 day. So she stayed at home to relax and to watch her Teo Chew opera.
Currently, my mum can actually move around easily at home without any difficulties, except that it is better for her not to carry heavy stuff only.
OIc. Hope your friend is alright. You mean your friend have to rush back cos someone has just passed away huh?
Wow..Teochew opera sound Chim to me. So you are a fan of Teochew opera too?
But you said that your mum is now ok and can move around freely with the help of the medication but why still need to go for the operation to remove the tumour leh? I have heard from expert that it is better not to go ahead with the operation as it might be worsen.
By the way i recently saw a tall tower newly build. And wonder how the civil engineer manage to keep the building straight right up. Will there be any chance whereby it is built slanted? When built slanted how to reverse it? Whole building for to do rework by tearing down?
I am not to mention anything here about my friend's urgent matter. Just guess what you think is logical will do.
No. I don't really watch TeoChew Opera even though I am a Teo Chew. Don't know how to appreciate it. hehe. Maybe only the older generation gets to enjoy the opera.
Now her condition is better, but medication still need to be consumed. As for the operation, further consulation is needed from the doctor.
Previously my mum should have gone for the surgery but condition weaken, so cannot do it. Removing the tumour also helps the condition in some ways, but there is always certain risks.
Which new tall tower u saw? location? is it near marina bay. building call "The Sail"?
A lot of civil knowledge to that. It needs to consider dead load, live load, wind loads, lateral force, earthquake factor (for some countries) purpose of the building, no. of storey, the structural system to be used.
The vertical supporting member call "columns" need to take into account the factors listed above and purposely design for to restand the load. Horizontal members call "Beams" need to be framed up to tie to the columns etc.
Some architects do like to have something odd, and some parts maybe slant, but it will also cause nightmare to structural enginners.
The columns dont really go slant, but is the shape of the building facade that may cause it to look slant. some structure do have slant columns but depending how it is to be designed for. (eg. the dover MRT station and maybe the Marina Sand 3 hotel buildings)
Yup. that think building i was referring was the sail. It won't collaspe? I wonder how they actually build it. very innovative i must say.
I have gone to the Nursing talk and still decide whether to switch career. I notice most of the nurses temper is not that good. I ask them about whether a reg nurse got to help clean up the patients and they said to pass as a nurse, one has to go thru all the process. Fainted. I still think that nurse job is very noble and can lighten up other people's life.
For my thinking is that, at least the job is not so boring like you can meet patient with different illness. And everyday you are able to increase your knowledge in medical or healthcare.
But my parent had asked me if i were to switch a career, it is better to choose something related to social service or helping the less fortunate. Which mean i will have to take up course on phychology and so on.
Sigh.....still deciding.
By the way, how's your mother's condition now?
Hope by taking medication, it will slowly stabalise the condition.
But what is read about this GM condition is not so common in our daily live...maybe you give the researcher some times and they will be able to cure it to 100%.
Oh yes, you wrote that she need an operation to remove the tumour. HAd she gone thru the operation?
I guess it is not necessary cos do you know sometimes the doc will treat patient like guinea pig and when they open up and sew back and tell the family that the 'stuff' cannot be removed or either it is not malign.
This happened to many families already. So do not always listen to the doctor's advice.
Seek other consultants would be better.
Most likely it would not collapsed. It has been properly designed for. It is also checked by other professional civil & Structural consultancy firm before it is approved for the Building & Construction Authority (BCA) for construction.
Oic. That's good. At least you make the effort to visit the talk. Yah. I think nurses have to help clean up patients especially those who are having difficulties or disabled. It can't be the doctors doing all these stuff mah.
Yes. Nurse get to meet all different kinds of people and get to experience differnt feelings at differnt situtations. I remembered when my mum discharged from NUH, I personally send a Thank you card to the ICT nurse and she is happy that my mum is tranfsered out from ICU and discharged from hospital.
oic. Yes. It is good that your parent give you advice, but it still depends on you to make the final decision. Do think through carefully abd I am sure you will decide what you actually want.
My mum's condition is stable. She will be going for follow up appointment soon. As for the surgery appointment, we did arranged for appointment with the doctor to discuss first. See what the doctor has to say on the appt date.
Thanks for your advice. I will try to ask around for other recommendation.
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