Jabber sent through the email below about a week ago – I’ve just got around to catching up on my personal admin: apologies. I’ve added a couple of Editor’s notes where necessary.

“Hi All

I’m proceeding okay on the first phase of my high 50mm steroid regime for treating Myathensia gravia. (Editor’s note: read the link or see below for what that is)

On the 1st of April I will step down to 45 milligrams. This will be the first gradual step down of many until I finally finished the harsh steroid program in June.

I take the steroids and some sort of Chemo tablet at about 8:00 a.m.

The mornings, say between nine and 12, are my worst times, but it’s manageable if I’m careful. Loss of what little patience I already have, together with very weak legs are the worst symptoms. There is zero pain involved.

I take a pick me up tablet at about 1pm. From then until the rest of the day I’m okay. However, this varies especially in the mornings. It can be quite bad when I can hardly walk. At other times, like today, I can get around.

Tomorrow (Editor’s note: that was 28 March) at 2pm I go to Fiona Stanley for another blood test.

I have an excellent young GP. Today (27 March) when I had my first Shingles vaccine, he noticed from the initial Myathensia gravis blood test sent to him from FS about three weeks ago that my red blood count was very low. I’m astonished that they didn’t pick this up at FS before. 

My GP said this anemia can be serious on steroids. We’ll see what the blood test reads tomorrow. If it’s still low I have to have to go to FS for another blood transfusion.

Other than that I soldier on as always.

Huan is scheduled to leave for Saigon on Tuesday evening. She will return for business and to have some medication of her own.

All going well, I hope to join her at the end of July for a limited visit. By the time I hope to have concluded my full steroid program.

Cheers, C”

Myasthenia gravis (MG) is a long-term neuromuscular junction disease that leads to varying degrees of skeletal muscle weakness. The most commonly affected muscles are those of the eyes, face, and swallowing. It can result in double vision, drooping eyelids, and difficulties in talking and walking.