Another doctor’s appointment today. After a series of basic physical tests (reflexes, strength, and so on), we began with electrodes being hooked up to nerves on my feet, and then the nurse used an electrified puck to send surprisingly intense electric shocks (sort of like a TENS machine) through various muscle groups and measuring how well the signal was being transmitted (I think). Because the problems appear to be symmetrical, only one leg was shocked.
The doctor then came in and did part two, which involved pushing a two and a half inch needle into the muscle and seeing what sort of signal was moving through the muscle. The insertion of the needle hurt a little, and moving the needle around inside the muscle was unpleasant but not too painful thankfully. First he put the needle into my upper inner leg, then into the thigh, then my shin, and then my lower back, right next to the spine (this one felt fairly intense), and then my shoulder and my hand. The whole thing took a bit over an hour.
While all this was happening, the results were being displayed on an oscilloscope as well as being amplified and output as audible sound, and the doctor seemed very focussed on trying to see whether anything was amiss in terms of the shape or amplitude of the signal. In the end, today’s test indicated a problem with the signals not being as strong as they should, which confirms a problem in the muscle, primarily in my legs but it also may be spreading. The muscle biopsy that was done a while back also implies problems with the muscle (rather than the nerves). Next week I’ve got a couple more appointments (CT or MRI scan, genetic tests, heart tests), but the current “shot in the dark” theory is that I have muscular dystrophy… but still, all we have right now are a very small set of symptoms that are not definitively pointing at anything, so that could easily not be the answer.
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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.
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.
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.
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.
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.
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.
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