This is the Part 2 of my blog post The Saga Continues.
A few days after the test was done to me, I received an appointment letter for me to see the neurologist who mainly looked after me. I, together with my husband and sons, went to the Neurology Day Stay Clinic at Auckland City Hospital last Monday.
There was also a Neurology student inside the clinic where Dr. R discussed about their findings on me. After he asked me how I’ve been, he asked the student: “What condition will you consider if the symptoms are muscular weakness and difficulty in swallowing, particularly after some activities and towards the end of the day, and her eyelids are slightly droopy and she’s having double vision every now and then? The acetylcholine antibody in her blood has been tested thrice and they’re all above the normal level.” The student gave some answers. She didn’t nail it!
Dr. R said, “It’s Myasthenia Gravis!”
What is Myasthenia Gravis?
At that very moment, I felt like everything in this world suddenly stopped. Even my breathing stopped…no, I just held my breath! My heart was beating fast and I looked at my two sons. I didn’t know what to think and feel.
Then Dr. R looked at me and started to discuss what he and Dr. C thought about my case.
The good news was the overall result of the test that was done to me was within normal.
The bad news was they still could not confirm that I really don’t have Myasthenia Gravis. He said that Dr. C explained to him that he’s had some patients who had normal results as well but after months or even years of investigating their conditions, it turned out that when the tests came back normal, they were only at the stage when Myasthenia Gravis was still developing until the symptoms got really worse.
So now what?
He told me that they won’t do anything at the moment. No treatment, no therapies, nothing… unless the symptoms start to get worse. They will see me again after 10 months. Yes, 10 months. He asked me to have another set of blood tests to see if any other autoimmune disorder is possible — meaning: if my immune system is also attacking my other organs such as thyroid, liver and kidneys.
My husband asked him if we can do anything (i.e. diet or lifestyle change or vitamins) to prevent the Myasthenia Gravis from developing in case it really does. Doctor said that there’s nothing we can do. Yes, NOTHING!!!
To be honest, that was very, very frustrating. We had waited for almost half a year to find out the cause of that horrible experience that not only me but our whole family had. And yet, the answer was still not final. I had been praying that I’d hear the doctor say, “it was indeed Guillain-Barré Syndrome and you have nothing to worry about now…” or at the very least (not that I want it), “you have this or that illness/disorder and we’ll start with the treatment and you will be cured.”
But then, I have nothing against my doctors. I know that they’ve done everything that they could. They have considered everything that they know (or learnt) and did all the possible tests. And I totally appreciate how they have handled my case. Moreover, I’m really thankful that they have never put me under any trial-and-error medications.
For now, I’ll wait until they call me again for my next appointment and simply pray that I’ll get better and better… and, of course, to continue living my life. After all, I’ve got two wonderful boys to look after and my husband and I have got beautiful plans for our family to look forward to.