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

The previous blog post about my diagnosis journey ended where I was finally diagnosed with Myasthenia Gravis. I was elated to finally know what has been wrong all along and to treat it, even though Myasthenia Gravis is a horrible and dibilitating disease to have.

It is bittersweet to get an accurate diagnosis. You are relieved to have an answer and to know that you haven’t been imagining symptoms. However finding out that you suffer from an incurable rare disease is not such a big relief.

MG (Myasthenia Gravis) has a very specific treatment process, whereby you start with baseline of medication and if these don’t work you progress to ‘stronger’ medication/s. The primary medication that is always used for MG and never changed is Mestinon, which  works against the acetylcholine antibodies that are classically involved in MG.

Remember that MG is a disease that affects the normal functioning of your neuromuscular junction. More specifically it affects the acetylcholine neurotransmitters in the junction, whereby antibodies attack these neurotransmitters and prevent normal functioning. Acetylcholine is not the only neurotransmitter or protein affected; there is also MuSK, LRP4 and Agrin. Researchers are still discovering more. So it is important then to note that Mestinon only works to defend the acetylcholine neurotransmitters.

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In addition to Mestinon the next thing you get when you have an autoimmune disease is cortisone or steroids, which has an anti-inflammatory effect. So my current cortisone dose was increased and it was the start of an annoying weight gain and moon face journey. ‘Sigh.’

The next medication to be added is an immunosuppressant. I was already on Imuran, because of my Lupus diagnosis and we continued on this. Unfortunately we had to stop it soon after my diagnosis as I couldn’t tolerate the side effects.

Fortunately my weakness improved, but I still had a lot of other symptoms, especially a lot of pain. Dr. P – The Wonderful – referred me to a terrific rheumatologist Dr. S. Dr. S made a surprise finding – I didn’t have Lupus (YAY!), but Fibromyalgia! I was shocked and relieved, as having both Lupus and MG are very trying. This also explained why some of my symptoms didn’t improve with a treatment regimen that should have worked for both MG and Lupus. I also found it very interesting that Lupus and Fibromyalgia or often cross-diagnosed as they have similar symptoms. This is a link to a piece explaining how these two diseases are often cross diagnosed –  http://www.fibromyalgia-symptoms.org/fibromyalgia_lupus.html

Fibromyalgia has a shockingly long list of symptoms and complications, which explains why you generally feel absolutely shitty if you have it. Some of the symptoms are below, but this link takes you to a piece on ALL of the symptoms – https://www.verywell.com/fibromyalgia-symptoms-716139#unusual-pain-types

Thus if you have Fibromyalgia you might experience some of the following symptoms:

  • Chronic muscle pain, muscle spasms, or tightness.
  • Moderate or severe fatigue and decreased energy.
  • Insomnia or waking up feeling just as tired as when you went to sleep.
  • Stiffness upon waking or after staying in one position for too long.
  • IBS (Irritable Bowl Syndrome.)
  • Chest Pain.

Fibromyalgia is a controversial disease that many – including doctors – believed was a physical manifestation of psychological distress. It was only two years ago that researchers established that it was a central nervous system disease. (https://www.sciencedaily.com/releases/2015/05/150517071813.htm) Because of this I wasn’t thrilled about the diagnosis as I was faced with the stigma of having a disease that people think you make up in your mind.

Unfortunately there are not really any effective (or curing) treatments available for Fibromyalgia. I was put on Lyrica, a nerve pain medication, and Cymbalta an antidepressant approved by the FDA for Fibromyalgia as it also helps for pain. I also use Stilpaine for when the pain gets worse. Some patients are prescribed opioids as well to deal with the pain, but I cannot have these as they are contra-indicated for MG. But let me tell you a little secret; none of these really help, because you are still in a lot of pain. Always.

On the bright side I had two correct diagnosis’ – Myasthenia Gravis and Fibromyalgia. And I could start to manage these diseases as much as is possible, which I did.

Next time I will tell you about my third  (and hopefully final) correct diagnosis.

XO

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