Red and the Big Bad Wolf

The story of me – Red living with Myasthenia Gravis or the 'Big Bad Wolf' as I prefer to call it

I ended off my last blog post in April / May of 2014, where I finally had a diagnosis! Lupus! I was so happy to finally have an answer to ‘What is wrong with me?” after 2 and half years of illness! (This would turn out not to be the Eureka diagnosis I expected. :() Now lupus isn’t a happy diagnosis – no autoimmune disease is – but it was something. We could name it and we could treat it and I continued on the immunosuppressants (Imuran) and cortisone (Prednisone) per instruction from my specialist physician Dr. K.

I even started my blog 🙂 Red and the Big Bad Wolf – with the name inspired by the origin and name of the disease Lupus. I joined Lupus support groups and I finally felt a sense of belonging. I no longer had a mystery disease. People could no longer doubt my illness and whether it was all psychosomatic.

I felt slightly better on the new medication, but far from good. I also struggled with constant nausea as a result of the immunosuppressants. We increased the dosage to see if my condition would improve, but after a two months it became unbearable and I couldn’t even eat – so we reduced the dosage again. I would come to realize over the years that my body is very sensitive in terms of the impact of certain medications; and I would often struggle with severe side-effects.

I still struggled with severe fatigue, general weakness in my body and limbs and pain. It was odd as I should have been improving on the treatment. And this did have Dr. K. and my neurologist Dr. P. (the Wonderful) scratching their heads.

I saw Dr. P. (the Wonderful) in July of 2014 for a follow-up. While we were talking she kept staring at me and then suddenly said –  ‘I have seen you looking tired and with bags under your eyes, but I have never seen your like eyes this. They look like they are drooping.’ She came over for a closer look and asked me if I had noticed this before. I said that I had actually noticed it on photos and even showed it to the Viking, but  he said I was imagining things and I thought so too.

Dr. P. (the Wonderful) looked at me with a big smile on her face and said ‘I know what is wrong with you! You have myasthenia gravis!’ This was the EUREKA moment of my diagnosis journey ! Of course I had no idea what myasthenia gravis was, couldn’t pronounce it, never mind spell it! 🙂 Dr. P. (the Wonderful) briefly explained what myasthenia gravis (or MG for short) was and wrote the name down so that I can also read up on it. She also said that we had to do a few tests to confirm the diagnosis – blood tests and an EMG test. Although the EMG test confirmed it the blood test didn’t, but she was still positive that I had myasthenia gravis.(This is a topic that I will cover in a separate blog post as testing for antibodies to confirm a MG diagnosis is not straight forward.)

Myasthenia gravis as a diagnosis made perfect sense and also explained why I wasn’t improving based on the treatment I was receiving for lupus. (Although it was a bit of a downer that I had both diseases – it is rare and troublesome.)

Like lupus, myasthenia gravis (MG) is an autoimmune disease, but it is very different. ‘Myasthenia gravis (pronounced My-as-theen-ee-a Grav-us) comes from the Greek and Latin words meaning “grave muscular weakness.” The most common form of MG is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups.’ (Courtesy of the Myasthenia Gravis Foundation of America http://www.myasthenia.org/) The most common symptoms of myasthenia gravis are:

 

  • A drooping eyelid
  • Blurred or double vision
  • Slurred speech
  • Difficulty chewing and swallowing
  • Weakness in the arms and legs
  • Chronic muscle fatigue
  • Difficulty breathing

 

As you can see from above the symptoms in bold already ticked quite a few boxes for me. Over time all of the symptoms would be come applicable to me. 😦

The following paragraph provides a detailed description of what myasthenia gravis is and how it works. You can skip this if you are not into long medical descriptions! 😉 (Ps. I still cannot properly pronouce ‘acetylcholin’ :))

‘The voluntary muscles of the entire body are controlled by nerve impulses that arise in the brain. These nerve impulses travel down the nerves to the place where the nerves meet the muscle fibers. Nerve fibers do not actually connect with muscle fibers. There is a space between the nerve ending and muscle fiber; this space is called the neuromuscular junction. When the nerve impulse originating in the brain arrives at the nerve ending, it releases a chemical called acetylcholine. Acetylcholine travels across the space to the muscle fiber side of the neuromuscular junction where it attaches to many receptor sites. The muscle contracts when enough of the receptor sites have been activated by the acetylcholine. In MG, there can be as much as an 80% reduction in the number of these receptor sites. The reduction in the number of receptor sites is caused by an antibody that destroys or blocks the receptor site. Antibodies are proteins that play an important role in the immune system. They are normally directed at foreign proteins called antigens that attack the body. Such foreign proteins include bacteria and viruses. Antibodies help the body to protect itself from these foreign proteins. For reasons not well understood, the immune system of the person with MG makes antibodies against the receptor sites of the neuromuscular junction. Abnormal antibodies can be measured in the blood of many people with MG. The antibodies destroy the receptor sites more rapidly than the body can replace them.'(Courtesy of the Myasthenia Gravis Foundation of America http://www.myasthenia.org/)

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I will continue in my next blog post with my treatment plan for myasthenia gravis and also more surprise diagnosis’. ‘Sigh.’ It never ends.

XO

 

 

 

 

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