Comments on: Jerry’s Kids

By: Shannon

Shannon — Sun, 15 Nov 2009 20:54:04 +0000

You’re right, Elizabeth, most of the adult onset forms of MD are MUCH easier to live with than the forms that are obvious in childhood.

By: Chris B.

Chris B. — Sat, 14 Nov 2009 21:45:03 +0000

Glad to hear they’re getting somewhere on a diagnosis.

I actually just happened to be talking with a coworker about a study with gene therapy in monkeys for muscle wasting disease. I found the link for the study: https://www.scpr.org/news/2009/11/11/success-boosting-monkey-muscle-could-help-humans/ and it looks very promising. It says that they’re going to start human trials hopefully next year, on people with Inclusion body myositis. So of course, I had to wiki that to see what it was. And, although I’m not certain of all your symptoms, it sounds like a very plausible diagnosis from what I’ve read on your blog.

It’s always good to see science making strides to cure diseases, especially when they’re ones that you have a personal concern with.

By: Elizabeth

Elizabeth — Sat, 14 Nov 2009 16:47:19 +0000

I was gonna say what Hammerhead already did, that with adult onset MD you wont have the debilitation seen with “Jerry’s Kids”.
Here’s to finding out what’s ailing you.

By: hammerhead

hammerhead — Sat, 14 Nov 2009 11:48:18 +0000

With all respect to Serpio – EMG is not a test to be done when doctors don’t know what to do. It is quite invasive procedure and unless there are real indications for it, we don’t do this. Besides, it takes a long time and is quite unpleasant.
As for muscular dystrophies, the ones of a late onset (like in your case, Shannon) have generally quite benign clinical course. Most of them can be diagnosed both with genetic and histological examinations. This is something one cal live with. I keep my fingers crossed for you to obtain the diagnosis at last, whatever this would be.

By: Shannon

Shannon — Fri, 13 Nov 2009 23:50:30 +0000

Yes, I think that’s what it was. In my case they seem to be leaning toward muscle over nerve. At this point I mostly just want to know what it is, because right now, it’s painful but the pain is controllable — I need to know if it’ll stay like that, or if it’s a symptom of something worse.

By: serpio

serpio — Fri, 13 Nov 2009 22:45:55 +0000

Was that an electromyography? Seems like it’s the test for when doctors have no clue what it’s going on. I’ve had many of them before, in my case it turned out to be nerve related. But to me it was quite painful. Hope you get better soon, or at least find out what it is.