Tag Archives: Acetylcholine

The Continuation of the Saga

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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.

The Saga Continues…

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Two weeks ago, I received a call and it was about the appointment that I had been waiting for for four months. So since then, I had been looking forward to the 29th of June. The more extensive nerve conduction and single-fibre EMG tests would be done.

29 June 2017 — The day went on as usual… looking after the boys, trying to organise and tidy up the house, etc.. My husband left his work at 1pm to drive me to hospital and to take the boys to the museum while I had to undergo the tests.

I arrived at the Neurophysiology reception 10 minutes before my appointment. I saw a few neurologists walking around. It felt good when they stopped to greet me and to ask how I’ve been… and told me that they’ve been looking forward to give me the final diagnosis. I’ve been hoping for that too.

I had to wait at the reception area for only five minutes. The very last neurologist whom I saw during my last day in the Neurology ward six months ago was the one who led me to the testing room. He examined me. The weakness that I thought was completely gone was still there. “You’re definitely stronger now but you’re still weak.” That’s what he said.

Then he explained to me about the procedure, which could last for 90 minutes. He then went out to call the neurologist who’s a specialist in conducting the tests.

The specialist entered the room. I was nervous but I was feeling positive too. I was glad when he told me that he thought they wouldn’t have to do the nerve conduction test since they thought that the problem is not on my nerves but on my neuromuscular junctions (I’m not sure what that meant but based on the name…it might be the connection between my nerves and muscles). Then he proceeded to examining me in the same way that I was examined several minutes ago and he started the SFEMG test.

He asked me to lie down and began to insert the needle into my right arm. Then I began to feel the “electric shocks” and heard those “tock…tock…tock…tock…tock…” from the computer. It lasted for almost 20 minutes. Then he transferred the needle just a few centimetres away from the first one. It lasted for around 10 minutes. Then he removed the needle. He told me that they seemed to have enough data and excused themselves to talk about the result. They went out for five minutes.

While they were out, I was thinking that they had the answer. I was wrong.

I was told that there were times when the number of jitters per microsecond was higher than the normal range but the mean was within the normal range so they had to do the same thing again but it would be on top of my right eyebrow. Yes, they had to insert the needle on top of my right eyebrow (which became a bit swollen after).

It lasted for almost 20 minutes. He said we’re done. He said I could already go anytime and that the main neurologist who’s been assigned to me would call me for follow-up. I was dying to hear about the result so I asked him about it. He said “We found abnormalities in the result and I would further look at it then I’ll send my report to Dr. R. He will then set a schedule for a follow-up appointment with you. But if you notice that your symptoms are getting worse like you’d feel you’re getting weaker again or your double vision worsens or your eyelids are drooping more or your swallowing becomes difficult like last time, you need to let us know right away so we can already put you under medications.”

The answer was not clear to me because there was no direct answer but I respect how he did it. Perhaps my main neurologist should really be the one to discuss about the result to me.

For now, I simply have to wait for the next call from them and hope that I’ll continue to get better without the need for any medications (because I have never been good at taking medicines).

Yes, the waiting game and the saga continue… 😔😔😔

How Am I?

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When I am asked “How are you?” nowadays, I honestly don’t know how I should answer that question.

How am I in terms of my health? Hmmm… I can say that I am so much better and stronger now as compared to how I was in January and February.

How am I? How do I feel nowadays? I can say that I can still find reasons to be happy, most especially when my sons are around. But there is one thing that I should be honest about.

I’ve been anxious and sometimes depressed.

Who wouldn’t be anxious when more than three months have already passed yet my condition isn’t clear until now? Who wouldn’t be anxious when I’ve seen worse result of a repeat blood test yet I’m still waiting for my turn on a test that might most likely confirm my condition? Who wouldn’t be anxious when I was supposed to undergo a test yet I received a call hours before informing me that the machine broke down and that the test would be moved a month after?

Who wouldn’t be anxious now that I learnt that the AChR level in my bloodstream had doubled up in just a matter of two months? (Here’s What is AChR?) The first AChR blood test done returned a 2.4 units result and the repeat test returned a 4.8 units result. Acceptable level is less than 0.4 units. This was the blood test result that made my neurologists think that I have Myasthenia Gravis instead of Guillain-Barré Syndrome. (Here’s What’s Myasthenia Gravis?)

Yes, with the help of all the therapies that I’ve been going through, I have been better and stronger nowadays yet there have been days when I would feel all the initial symptoms back once I get tired.

Yes, I have graduated from using a walking frame but I still need to use a walking stick and I have been prescribed with a pair of distance eyeglasses. And I am still not allowed to be out and about without an adult companion. How many 35-year-olds have been required to walk with a stick and eyeglasses and required to have an adult companion? I am still thankful for the progress that I have made in the past few weeks though. But, honestly, it is hard!

Required when I’m out and about plus an adult companion

Who wouldn’t be depressed when you have two young adorable boys yet you cannot run around a park with them? Who wouldn’t be depressed when you would want to take them to swimming yet you can’t because no one can give you an assurance that you can be safe when you go for a swim?

Who wouldn’t be depressed when you’re thirty-five yet you have to depend on other adults around you? Who wouldn’t be depressed when you want to believe that you’ve been recovering well yet many people treat you and look at you like you are a very fragile item?

Who wouldn’t be depressed when all you want to do every single day is to just do all the things that you would normally do yet you have to undergo physiotherapy, occupational therapy plus talk therapy (psychotherapy) almost every day then you have to be checked by a dietician and speech & language therapist every now and then? That’s exhausting yet I am still grateful that I am being looked after very well by this awesome rehab team.

All these things plus some issues on the sidetrack have made me feel anxious and depressed yet I am still so thankful for all the help and blessings that I have been receiving.

So how am I nowadays? I am not really OK yet I am still fighting and trying to look fine. And I’m still looking forward for what is beyond all these challenges. After all, life must go on!

 

The Labyrinth in My Mind

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I’ve been wanting to write since after my appointment with my doctors earlier today. There’s so much that I would like to write. But I don’t know how to start. I don’t know exactly what to write about.

 

Should I write about exactly what the doctors discussed with me? Should I write about the special blood test result that they already received from UK and Australia?

 

Should I write about my single-fibre EMG and Nerve Conduction tests that were done earlier? About how it felt to have a needle inserted into my muscles and being moved around my muscles with those tingling electric shocks?

 

Should I write about acetylcholine? And what should I write about acetylcholine? Its formula or IUPAC name or molar mass or its chemical structure that I learnt from Organic Chemistry and Biochemistry classes back in Uni? Or should I write about how it was discussed by my doctors today?

 

Should I write about Myasthenia Gravis? What about that? About how it can present itself as Guillain-Barré Syndrome? About the medicines that I might need to take, which I hope I wouldn’t have to because once I take such then there’s another medicine to take to prevent the side effects of the main medicine?

 

Should I write about me having to wait for another set of days until the other special blood test results arrive from UK? Or about the scan that should be done on my thymus gland and why it should be done?

 

If someone dares to get into and to explore inside my mind now, he or she might feel how it is to be in a labyrinth.

 

Just when I thought that I have been recovering big time from Guillain-Barré Syndrome, the doctors discussed with me what my condition has been most likely instead of GBS.  And as if GBS was neither rare nor complex enough, the doctors consider that my condition is the rarer and more complex one. The truth is that even if I’ve never wanted to have GBS, I’d rather have it than MG.

 

Looking at the bright side, at least my doctors don’t simply make me take any medications unless all symptoms and test results perfectly match one another. And this whole thing has made me witness the real life “Grey’s Anatomy” (Neurology edition).

 

I’m still hoping and praying for the best.