Day 17… Mr Gravis and me

Myasthenia gravis (MG) was first described by Thomas Willis way back in 1672. He was an English doctor who played an important part in the history of anatomy, neurology and psychiatry.

Myasthenia Gravis is an autoimmune condition. Antibodies which normally fight infections go wrong and attack the communication system between the brain and movement muscles causing weakness, which makes day-to-day activities like walking, smiling and talking very difficult. When swallowing and breathing are effected, this can lead to medical emergency, referred to as a ‘crisis’.

imageOne of my first symptoms was diplopia (drooping of the upper eyelid). One of the things my hubby teases me about is my raised eyebrows. I regularly hear the phrase “put your eyebrows down” as I’m known for eye rolling and brow raising in exasperation, but facial muscle weakness is very common, producing an abnormal horizontal smile with furrowed brow. This photo was taken yesterday and I hadn’t taken my medication properly, so my lids look a bit heavy – though not as bad as it has been in previous weeks.

Around 10% of patients have a thymoma (a rare, usually benign tumour) that may require surgery (called a thymectomy) to remove this as part of the treatment. Thymectomy usually results in remission of myasthenia gravis with the help of steroids. However, this remission may not be permanent. My thymus gland was found to be enlarged and a suggestion was made at point of diagnosis to have it removed, but a second CT scan at a later date showed it had reduced in size (which is highly unusual), so I have avoided an operation… Something I am very relieved about as pictures I have seen of other patients revealed huge scars running down the chest, almost from trachea to abdomen! It’s a big deal.

As mentioned previously, with my remission ending and MG rearing its ugly head, I am awaiting re-referral to my consultant. My concern is that my thymus may have grown again and be a cause of symptomatic return. Or it could simply be the general anaesthetic from my operation caused the onset…who knows? What I do know is that I may be able to help myself a little bit. I realise diet and supplements probably won’t ‘get rid of’ MG totally, but hey, I’m all for anything that might improve my symptoms so I can enjoy (and keep up with) my boy.
myawareTo read more about MG, click the link and view the information pack provided by Myaware entitled ‘myasthenia for complete beginners.

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