Tuesday, September 14, 2004

I’ve got MG - and it’s not a sports car ! (part 1)

I shamelessly stole that title from a personal webpage whose links I can’t find anymore. So whoever you are … thanks for the idea.

Yessireee, I’ve got
Myasthenia Gravis or MG for short. This means I sometimes have any or all of the following things: drooping eyelids, double vision, blurred vision, slurred speech (ngo-ngo at bulol), difficulty in swallowing, chewing and breathing, and general weakness of the arms and legs. It’s not so bad these days especially since my doctor put me on medications, I only experience very mild episodes of the above symptoms when I am very stressed or very tired. He said I am in ‘remission’. I do hope I will continue to be in the future.

The Diagnosis and Pre-operation times:

The very first time I felt my MG around late March 2003 is when I was at work and I was talking to a colleague on the phone. Suddenly I couldn’t speak, my jaws felt like lead I couldn’t lift or move my tongue. I thought I was having a stroke and I really panicked. So off I went to my GP (general practitioner) who referred me to a neurologist who in turn put me through lots of tests including one where they put electrodes on your face and mildly electrocute you – I forgot what it’s called. But worse was one test where they pierced a long needle thru my forearm and electrocute me via fingertips. Naku ang sakit nun. It was really painful. These and blood tests confirmed to my doctor that I have MG which is an autoimmune disease affecting my muscles. In plain speak, my body is producing too much antibodies which are attacking or blocking the tiny proteins that sends messages from the brain to the muscles to contract, expand, or move. Kinda like ‘shoot the messenger’ eh?

Then came the MRI scan where I felt so claustrophobic I kept twitching that the images did not come too clear. But the scans were cool looking, all coloured and I could see a good dissection of my body side view and top view. I didn’t know it then but he suspected I had a tumor. So he made me go through a CT scan and it was there that they saw I have a thymoma (tumor in the thymus gland). I thought, what is a
thymus gland? Until then I didn’t know I have one. Apparently MG exists in 50% of cases of thymoma.

MG they said can be caused by prolonged physical or mental or emotional stress. I have always been stressed being a working mother. But I have to admit during that time I have been under probably one of the most stressful times of my life. My father who visited us here in UK suffered a stroke. He was in hospital for about 3 months. The shock and the worry about my father really put me thru a lot. Plus I was leading a project at work that was anything but smooth. On top that, doing a lot of things around the house and caring for 3 kids, one of whom was only 2 years old, I have to rush almost every night to the hospital to see how my father is doing, bring him Pinoy food, etc. And then we have to move house. Added to that, my relationship with my husband at that time was going down the drain. Additionally, he was made redundant consequently further worry on the finances. So you could see how much I had on my plate at that time. Besides these outside factors, physiologically I think I was a perfect candidate for MG since I already have other autoimmune problems. I have
hypothyroidism since age 11 and psoriasis. Probably God was saying – well you asked for it so here it is ! Funny, a few months before I was diagnosed I heard this inner voice telling me that I have a pretty stable life (sometimes boring actually) that I need something to spice it up. I was not betting that it would come out like this.

Now that they know that I have a thymoma, they quickly arranged for me to have a thymectomy (removal of the thymus gland) within 2 weeks! That’s the advantage of having private medical insurance things move very quickly unlike when you have to go through the govt’s National Health Insurance (NHS) it’s free but the waiting time is so long it means you have to wait for months even a year. Teka nasan na ba ako, where was I? The operation, they wanted it right away because they are worried that my MG might worsen and it will complicate the operation. I really got scared because they have to cut thru the
sternum so it’s like having an open heart surgery - a major surgery.

On a side note, I noticed that surgeons here are titled Mr. not Dr. I asked my neurologist about it. He said it’s just the tradition here and no need for me to worry because he said the surgeon is not just anybody that walked in from the pub. He is indeed a qualified doctor/surgeon except he’s not called ‘doctor’. Hmmm, I tell you these Brits are a strange lot!

I really don’t want to go ahead with the surgery I was patently scared. My doctors said that whether I have an MG or not, the fact that I have a tumor there means that it definitely have to be removed before it enlarges further and press on the other organs with the main concern that it might be malignant. Anyhow, I prayed and meditated and I eventually followed this voice I heard saying – “you’re going to be all right don’t worry”. So I decided to go ahead.

I hear this “voice” usually during my most difficult times. It is different from the noisy static of my everyday paranoid thoughts. It is calm, authoritative, and from experience speaks the truth so I know I better follow it. Is it God? It is my inner voice? It is the ‘force’? Is it an alien :-) ? Beam me up Scotty ! Whatever it is, however it’s called, it’s something I cannot dismiss or ignore.

To be continued …


ting-aling said...

Wish you well. Hoping for a speedy recovery. AT least may past time kang blog when you're at home recuperating.

loryces said...

oh wow. this must have been a very difficult time for you. :( i'm a nursing student so i have an idea of what you're going through. i'm so sorry about your condition. you'll be in my prayers even though we dont know each other. take care. :)

celia kusinera said...

Hi ting and loryces: Thanks very much for your concern and prayers. It's these goodwill from friends and family that keep me going. I'm now working fulltime and am thankful that I'm functioning more or less normally these days.

Atinna said...

Hi, I was bloghopping and I came across yours. What you have written here has made me ponder on a lot of things and then I remember this: "Do not pray for an easy life. Pray to be a strong person" from Phil.4:6-7. I wish you greater inner strength (and of course great health). Take care now.

celia kusinera said...

Hi Atinna, thanks for your concern and that Bible verse. Quite thought provoking isn't it? Everybody wants a smooth, happy, problem-free life. But we have to realise that out of strife, grief, and pain can come out something good and renewing. Painful childbirth gives life, burned forests yields new shoots, death of a loved one can give strength of character to people affected.