Fighting Myasthenia Gravis (MG)

If someone had the ability to go back in time and tell the 18 year old me that at this age, I would be fighting a battle as big as this, my 18 year old me would be FLOORED. The past few months felt like we were going through an endless tunnel. It felt like fighting an invisible enemy. Slowly we were getting our footing. Slowly moving forward. 

Earlier this month, we received a ray of hope. A possible way for me to feel better. Those slow steps have led us here. Now. Waiting for a plane that would to take us to Manila. With a bag full of hope and love. Ready to continue to fight..Hoping to be in full remission when I go back home.

This is my story. This is my journey. A journey of a mother of three. My own Myasthenia Gravis story.

EPISODE 1:
My legs are sore and arms are weak. I easily get tired and if I am tired enough, my eye would go droopy. It's really surprising the difference between now and a few months back. How a life full of promise becomes so challenging. How a simple task that we usually take for granted becomes a task so hard and tiring. To better understand, I think it's better to go back to when it began. Try and reminisce to a time, when getting up or eating was just a routine task.

I have frequently complained of headaches before. Especially when I am stressed. It was not a constant thing but it was a common occurrence. So it was not a surprise one December of 2018 (Dec 21 to be exact) morning when I woke up with a cracking headache. It felt like my head was splitting in two but what made this different was that my left eye was slowly drooping. It felt so heavy that I have a hard time keeping it open. As the day progressed, the heavier it got. I just took the usual meds (Biogesic) and worked through the day. On the third (3rd) day, it was becoming really noticeable because my left eyebrow looked like it was lifting up while my left eye continued to droop. I have heard several "diagnosis" from different individuals. From as simple as "Bughat" to Bells Palsy. It was getting alarming but since we are in the province (Nasipit, Agusan Del Norte), my husband, Ryan and I decided to just consult the local Rural Health Unit (RHU) to which it was their diagnosis that it was a simple case of Bells Palsy. I was given some anti-histamine and some steroids. After a few days, I felt a lot better. It felt like I was back to my normal self.

Little did I know that it was already the beginning. I was about to go on a journey full of uncertainty and frustration. That this is the first episode of a long story. This is my story. This is my journey. A journey of a mother of three. My own Myasthenia Gravis story.

Episode II

I faced the Christmas and New Year just like I always have, full of hope and love. We traveled back to Cebu to spend it with family and the kids bonded again. It was fun. I still remember how fun it was. I still remember how tired we were. Carrying all those luggage around. But the memories are forever etched in my brain. How we laughed and did things together. The "Bells Palsy" episode was discussed but just as a mere simple experience. Something that back then, was just of little significance. A simple side note on a wonderful Christmas season. The headache was still occurring every now and then but since I have had frequent headaches before, I took it as a "common" thing. 

We traveled back home and life went on like any normal thing. I continued to work and continued to have those frequent headache. Then the month of hearts came, we were driving to work when I started to notice. That nagging numbness on my left eyelid. I told my husband and since we got a favorable response to the previous prescription, we both decided to visit the local Rural Health Unit (RHU) once again and was given the same medication. I religiously took the medicine and tried lived my normal life. Even though the previous months have continued on like normal. I can't help but feel frustrated about the challenges that we face but life is like that. I know that sometimes life would give you lemonade and I am used to making lemonades but it becomes frustrating constantly having lemonades. But it is what it is. Best work with the cards given to me.

Little did I know that I was about to hit a big hump. Never knowing that the hump could easily turn into a mountain. If I have known, I would have prepared but life is like that. We are never truly ready and boy was I not ready. This is my story. This is my journey. A journey of a mother of three. My own Myasthenia Gravis story.

Episode III

I did not expect that it would recur or that it would recur this early. So imagine my surprise when I felt the numbness again on my left eye. Only this time, I also feel feverish. The headache was still there. My muscles were weak but I could still work. This started last March 20, 2019. 

During the week, the headache has been recurring. I was also having this on and off fever. My muscles continued to weaken. I easily got tired. It's frustrating how simple things are becoming hard to tasks but we still continued on. My family is getting worried but I assured them that I just needed rest. Then came the following week.

Have you ever felt so weak that you literally can barely lift your leg? Have you ever experienced body pains so bad like after running a marathon that you never really prepared for? Have you experienced breathing so erratic that you sometimes have to stop whatever it is you are doing? How about knowing and feeling awake yet you can barely lift your eye open? 

This is literally what I felt when I woke up last March 29, 2019. Add to the fact that the headache has increased in intensity. I tried to get up and mustered whatever strength I have and tried to make my way out of our room. What makes this day scarier was that when I woke up, my left eye was almost shut. I have a noticeable limp because I can barely move my left leg. My husband noticed a little slur in my speech. I also noticed that I am experiencing double vision. I am scared. Totally scared. My husband and parents are getting worried. We decided then that we will visit a specialist to consult my current state. 

THE SADDEST AND SCARIEST APRIL FOOLS DAY

April fool's day is celebrated worldwide and the idea is to enjoy the day with pranks or jokes. This was also the same day that we decided to visit a specialist to consult about my situation. I still remember me and my husband laughing while waiting for the doctor. How he tried to make me laugh to make things light. I was expecting the same diagnosis. Maybe a different or stronger medication. I was even looking forward to a good meal with my husband. It was not everyday that I get to spend some time with him. Everything was going well, in fact, we were catered first because we were early.

We explained my situation and its history. My husband even filled in some of the details to make sure that our doctor was fully informed of the situation. The first thing that came our of our doctor's mouth was, "This is definitely NOT Bels Palsy.". We were surprised but we still listened. "Since she is experiencing pain, we need to have her go through MRI with contrast to rule out brain tumor.". Hearing this felt like I was hit by a really large brick. Our doctor continued,"If her MRI shows negative, we will have her go through Lupus panel to rule out Lupus". Me and my husband were floored. Our doctor continued on but all we heard was just a bunch of mumbled words. I could honestly still remember that loud pinging sound and the feeling of a large lump in my throat.  I wanted to listen to the doctor but my ears failed me. I could see my husband listening but later on, I learned that he was feeling the same. 

We went out the clinic but I felt so light yet I could feel my foot getting heavier. All I could hear in my head were the words "Brain Tumor" and " Lupus". I know that the doctor said something else but those words were too big that I could not wrap my head around it. I called Mama and I cried. I tried to relay the doctor's message as best as I can but I was crying. I was confused. Scared. Concerned. I could feel the large lump in my throat. I could hear my husband trying to explain what he understood but his words are not reaching my head. 

My family and I decided - CEBU. We need to go to Cebu. We went home and literally took a few minutes to prepare our clothes. We were still talking about plans but the words weighed heavy in my head. I know my family is going through a lot but the words weighed heavily on me. Like a cloud so thick yet I can barely breathe. As we sailed, a thought came to mind. Is this a prank? Is this a joke? I was still hoping that the doctor would call and shout "April fools!". That call never came. And as the ship continued to sail, a realization is slowly sinking in. This is my current reality. This is my journey. A journey of a mother of three. My own Myasthenia Gravis story.

Episode IV

Woke up to the swaying of the ship. It still felt like it was all just a dream. Woke up a little disoriented and in pain. Did a little check and found that headache is still there. Muscle pain. Fever. Droopy eyes. Yup! It was not a dream. We then heard the announcement that we are near the port of Cebu. Yup! Definitely not a dream. I tried to get up and with my husband's help, slowly. Then the words played in my head. Like a broken record. A reminder. "Brain tumor... Lupus..." My husband reminded me, "We are here to RULE OUT brain tumor. It's not like it is actually there.". It is funny how three words drown out two whole sentences but that is exactly how it was. It was like sentences falling on deaf ears as the fear of those three words hung above my head. I still wish that I could hear the words "April fools!" but those words never came. I guess it never will.

I was really weak as we made our way slowly down the ship. We slowly trudged down and out of the pier. Pier one never felt so far. Uber was a life saver as it made it easier for us to travel from the pier to the hospital. Yes, we made our way directly to the hospital. The pain was getting worse but it was a constant reminder of my current condition. We arrived early at the hospital and decided to eat breakfast first. Never have I struggled at eating before but now, I have a hard time opening my mouth. It's the joint in my jaw is locked or something. Still we slowly ate breakfast. My husband is his usual bubbly self. Clearly trying lighten such a gloomy mood. We went into Chong Hua Hospital's emergency room with the hopes of just going through MRI to rule out brain tumor but as the day wore on, I felt more weak. The pain slowly eating at me and breaking me down. I tried to stand brave against the pain but it has been there for such a long time that it was becoming really hard to keep steady. My husband continued to try and make things light. Pointing out how efficient the nurses are at what they do. They sure are. It was also great to talk to a doctor whose parents were actually our neighbor. Our Ninang also arrived. Tried to continue to encourage and stayed with us as we were processed.

Needles. Lots of them. Blood tests taken from my arms both right and left. Too many needles poked my arms that it actually formed bruises. Skin tests and medicines both taken orally and injected through my IV. Headache. Fever. Muscle pains. I continue to wish that this was all just a joke, but clearly it not. At least, the ER doctor, nurses, my husband and our Ninang kept me company. My doctor did come around to visit me in the ER and we gave her the history of my struggles. She agreed that this was not Bels Palsy. She did explain that it is a normal procedure to rule out brain tumor. As she said, it could range from a case of severe migraine to brain tumor. Hearing her explanation made it easy to understand and have a plan of action. I will always be grateful for our Ninang as she stayed with us until I was taken to my room. 

The pain is still there. As much I want to say that I am getting used to it, there is really no getting used to the pain. The new medications add a new layer of pain every time it gets injected into my IV. I was then informed that I am scheduled for MRI after 2 days. Better than the ten (10) days if we choose the out patient option. I was still hopeful that I will be out after the MRI and just like the previous days, boy was I wrong. But we are still fighting. Continuing in the journey. The journey of a mother of three. My own Myasthenia Gravis story.

Episode V

Two days might fly by but not if you are looking at the same corner. The clock ticks so slowly. The pain, slowly eating at me. Getting woken up in the middle of the night to get my vitals. To say that I still have my wits with me is a stretch. I was grumpy. I have a short fuse. I wanted to just get it over with. But that is the thing with time, it goes its own merry way. Can't make it go fast or slow. To call it frustrating is a great understatement. It was annoying. It was hard to be positive when negativity keeps on hitting you right and left. 

It took a few follow ups but we finally got to our mission. We finally got a crack at MRI. I was scheduled for MRI plain and with contrast. The descent was the slowest elevator ride I have ever been in. I was about to go through a test to determine if I have a brain tumor or not. I am supposed to be ready now but I am afraid. Afraid to find out if it is positive and the story that it entails. Afraid to find out if it is negative and all of it's uncertainty. I was confused. I was afraid. All I know is I just want to get it over with.

Cold. It was cold waiting for the procedure to finish. I was not allowed to move. It was cold. My back was painful. I was tired. My muscles hurt. It was supposed to be 30 to 45 minutes, the procedure went on for 1 hour and 15 minutes. I felt them pushing me out of the room. I could barely see the lights flashing by. I can barely lift eyes open. 

Cold. 

Tired. 

Hurt. 

It was nice seeing the familiar faces of my husband, sister and brother-in-law but my eyes can barely stay open. I wanted to drift off to sleep but I also want to speak to them. I was so tired. We still spoke as we slowly made our way back to my room. Then it was back to the waiting game. This has so far been the greatest test of my patience. I would be lying if I did not burst out in a fit once in a while. 

Cold.

Tired.

Hurt.

I wanted to give up but my family won't let me. We just need to wait for the result. We just need to keep on fighting. Continue walking. Continue with the journey of a mother of three. Continue my own Myasthenia Gravis story.

Wiggle... Wiggle... Wiggle...

Woke up to wonderful feeling. One can truly appreciate something once they loose it. I may not have lost it but to me it is too close for comfort. Continuing to wiggle my toes, I get to enjoy doing it without pain. I also notice some improvement with legs are arms. I still hate the nightly visits from the nurses. Especially when they inject the anti-biotics. My husband had to rub my arm each time they try and slowly inject it. The hospital food is not so bad. The cable TV is something that they can DEFINITELY improve on.

I was pleasantly surprised to see our doctor doing her early rounds armed with her entourage of doctors and nurses but her approach made me slowly feel a lump in my throat. Slow, trudging walk. She looked like she was a messenger of such bad news. The suspense killing both me and my husband. Slowly making her way to my bed, she smiled. "Ma'am... Ma'am, the good news is, your MRI came back negative. You don't have any brain tumor. We did see a small scar but based on the size of the scar, it should not be enough to cause your current symptoms. Maybe you fell as a child?". (she said most of is in Bisaya) We felt so relieved to hear her say those sentences. Like the lump in my throat immediately melted then I realized, if this was not because of  a brain tumor, what could be causing this? Before I could ask the question, our doctor continued on in her now familiar soft tone. "Your condition could be either a severe case of migraine or myasthenia gravis (MG)". I literally saw my husband hunching forward trying to catch each word as she said it but both of us have the same expression. Migraine, I get that. Myas...? What was that? I guess our doctor saw the question mark on our foreheads because she smiled and continued to explain what that meant. The gist of it is, after all those test, we are still not 100% sure, we need to conduct more tests. Tests for the nerves. Different acronyms that I can barely say let alone remember. Further which meant further expenses. Now that the pain is gone, a different thought is starting to occupy my brain. Expenses. I wanted to go through the tests but I know that me and husband don't have enough money to go through the tests. In fact, my parents have been assisting us through this ordeal since day one. I can literally the peso sign piling on and I honestly wanted to give up. I wanted to just take on the pain and not go through. I did not want to burden anyone anymore. I think stress is a big factor why I am going through what I am going through now and now, STRESS is written all over my face. A phone call from Mama and Papa calmed my nerves down but the thought has always been at the back of my head. Constantly nagging at me. It was where the pain was before. I can feel my head start to break. I started to ask the question in my head, "Why?" but the answer is always the same. Nothing. I can't see through the cloud of pain and concerns. 

I cried.

My husband tried to calm me down.

I turned away and continued to cry.

I miss my kids.

I want to hold them.

I cried and cried.

Then nothing. I realized later that I have fallen asleep. My mood has not changed but at least I was rested. I went through a battery of blood tests and nerve stimulation tests (EMG-NCV with RNS) which still came back negative. What that means was, my nerves are still good but it does not mean that I was already out of the woods. The test to really determine if I have Myasthenia Gravis (MG) is the test called, Single Fiber EMG which, to our dismay, is only currently available in Manila. We were given the clearance to go home but my head is far from being clear. Don't get me wrong. I am happy that I went through all of the test and we already have a clearer picture of what is going on but I can't shake off the thought that we all though a lot and paid a lot of money and we are still under unsteady feet. 

Frustrating. 

Disappointing.

Can't help the tears from flowing but we still continue fighting. Continue on with my journey to the next chapter of my Myasthenia Gravis story.

Episode VII

Tick... Tock... Tick... Tock...

I want to push the hand faster but we all know it does not work that way. Papers are so light yet they move so slow. From one department to another. We just want to get out of here and make our way back home. Slowly, we trudged our way out of the hospital and right into my Ate Anan and Clyde. They are taking us directly to the pier as we wanted to get home as fast as we can. I stayed with them while my husband takes care of our tickets. Slowly, we made our way up. Left with no choice, we have the upper bunk. I still remember it like it was literally a few months back. Climbing up the bunk took a little effort but today it was different, each step takes a lot effort. The pain slowly creeping in. We went through all the test results and went over all of the explanations. The idea that I have Myasthenia Gravis (MG) is there but the realization still has not fully sinked in. 

We got home to a very warm welcome. The kids prepared a special welcome home art that melted my heart. I miss my kids. Saying those words is not enough to describe how I felt that day. I tried to live as normally as I can but the pain is a constant reminder that normal is anything but. In fact, my condition has worsen. If I was able to get to do things using my own strength before, now, I need my husband to help me up. I tire out easily. So easily in fact that I am winded just after climbing two flights of stairs. I am still able to work as the tasks can be finished easily. 

We (me, my husband and my mom) consulted my neurologist in Butuan and learned that she did try to explain and mentioned that what I have might be a case of Myasthenia Gravis or maybe we were just really shocked about her news back then. Anyway, she suggested against doing the Single Fiber EMG at this point instead since this option is only available in Manila. She suggested that I start drinking Mestinon. Mestinon or Pyridostigmine is a medication used to treat myasthenia gravis. It improves muscle strength. It works by preventing the breakdown of a certain natural substance (acetylcholine) in your body. Acetylcholine is needed for normal muscle function. I was told to drink a tablet three (3) times a day and observe if there are any improvements. Our strategy at this point is simple. If my condition improves after taking Mestinon, then I have Myasthenia Gravis. If not, then further tests has to be done. This was a cheaper way of having a clinical diagnosis of my current condition. I went home that day with a confused yet hopeful expression. Confused with all the terms used and different choices that were provided yet hopeful because we now have at the very least, a direction. A step forward. One at a time. Continuing my very own Myasthenia journey.

Episode VIII

For the first time in what feels like months (when in reality, it was only a few weeks), I woke with the nice sensation of mild pain on my left arm. It was quite ironic how my body welcomes the mild pain after all the pain that I have been through the past few weeks. Still, it was a nice start of the Holy Week for me. At least, I get to try out the medication while it was the holidays. After the first round of medication, I can already feel some improvement. It was not a vast improvement but I feel better. Chalk that as a win on my part. Finally, I can see some small wins that we can celebrate.

The days off had made me realize a few things. 

1.) Although I have gone through a few tests and the explanations have been nerve wracking, I was still hopeful that I can beat this with the help of my family.

2.) The hardest part of my struggle is not the physical pain that I have to endure. It's the unsolicited advise that people would blurt out. It is one thing to give advise on something that you personally know but it is a totally different story if they would say something and compare things what I have with the things that they went through.

"Bughat" is a common term that is used to describe almost everything that one feels. From one's lower extremities to the tip of their hair, almost any ailment is connected to this term. It was funny at first but the more that people use it to describe what I have, the more it hurts on my part. Every single time someone compares what I have with "Bughat" feels like self doubt that slowly eats at you. Like a shadow that slowly creeps at you. Eats out all the positive feeling in you and leaves you hollow. Empty. Especially with those few who would even make a face that somehow describes what I am going through as a simple thing. During these times, I just want to hide under a rock and let the pain swallow me. I just want to disappear and just be quiet. It is at these times when my temper would sometimes get the best of me. I lash out. I cry. I get angry. I feel miserable. I feel alone. 

Look. 

Don't get me wrong.

I know I am not alone. 

However, I am the one that has to endure the pain. I am the one that has to explain something that I don't totally understand and still be compared to something as generic as BUGHAT. I am the one that has to look at each of those doubtful stares or those questioning looks. THIS is why I feel alone. I know my husband is with me and he endures the same stuff as I do but there are things that I take on on my own. 

So yeah.

I get angry at times. I lash out. I cry. 

But in the midst of all of this, I still have this comforting touch. He will just be quiet. He will usually just say what he usually does. "What they say don't matter. The people in our house are the only voice that matters.". The comforting kiss of my kids and the loving touch of my family, they are the steady force that keeps me standing. Then the last realization hits me, the Lord God had to endure so much pain for all of us. What I am going through now is nothing but just another hurdle that I have to overcome. An added notch on the cross that I bear on this journey. My own Myasthenia journey.

Mestinon did the trick for me. For the first time in a long time, I got up from bed on my own. Another win for me! A smile plastered on my face felt great! A wonderful morning to finish the Holy Week. A wonderful gift from a risen Lord. I had an extra spring in my step as I walked out of the room. Ready to face yet another round of doctor's visit.

We arrived early and was blessed with being the first patient seen by my doctor. Our discussion was going well and we were given a clinical diagnosis that what I have really is Mysasthenia Gravis. She came to this conclusion because, Mestinon, cures symptoms of Myasthenia Gravis (MG). Again, a step forward. Small wins that counts so much for our morale. 

Note: For more details about Myasthnia Gravis (MG), click here.

I then asked, "How long am I going to stay on medication?". With a plain and honest face, our doctor responded, "All your life. It is a LIFETIME medication.". I felt like I stepped back ten (10) steps or so. Like a cold bucket of water was suddenly poured over me. I don't want to be on medication all of my life! I don't want to become a slave of the pill! We asked if there are other options to which she responded on the affirmative however, we do not have a definite diagnosis that confirms that I have MG. She gave us the following advise:

1.) Undergo CT Scan of the chest to check if my Thymus Gland is enlarged (Thymoma).

2.) We have the option of going through a test called, Single Fiber EMG. This is the only test that can determine if I have MG or not. Also, this is ONLY available in Manila. 

3.) We also have the option of thymectomy. Basically, the doctors will remove my thymus gland. While there are no established treatments that could completely cure MG, thymectomy has been studied to improve muscle weakness and reduce the lifelong need for immunosuppressive drugs.

The extra hop in my step, gone. Replaced by slow, dragging, heavy boulders that hold my feet. I thought I could see the light at the end of a tunnel, turns out, it was just but a small firefly. I wanted to throw everything out but I am also afraid that doing so would mean that I would lose what energy my body has. I feel like a toy with a bad battery. Always needing a charge. I am still young for crying out loud! I wanted to cry! I wanted to shout! I can't. 

Instead of lashing out, we just continue on. Walking out of the clinic, I could hear the door hitting the frame. The lock in place. I am so frustrated. Looking into my wallet, I could see a few bills and I felt my weak knees go weak. I had my husband check for the price of a CT Scan, and just as I suspected, our money is not enough. 

Do you know what is worse than being told that you are now a slave of the pill? Being told that you are and not having enough money to buy the pill let alone a test that costs thousands of pesos. I wanted to shout! I really wanted to lash out and honestly, I did! I belted out my frustrations at my husband. How he is able to take it all and not lash back still baffles me but it did make me feel a little better. As I calmed down a little, both of us agreed. My parents have done SO MUCH for us that we can't possibly ask for more. I know. I know. Most would say that it's okay but I would be lying if I would say that the thought did not cross my mind. So we both agreed, we will look at other options, and we both turned to the government for help. We went home that day with heavy hearts but with somehow, a sense of direction. At least, we got that. With all of what's left in my sanity, I held on to that. That small glimmer of hope. That sense of knowing what we need to do. Slowly trudging forward. Continuing the fight. On with the journey, my own MG journey.

To be continued...