We will be seeing Dr Wong in couple of weeks.
We have been seeing her for 3 yrs now, but she has ordered Mucsle MRI now for the first time.
I have couple of questions:
1) What is the significance of Muscle MRI?
2) What is the procedure? Is it lengthy, painful, exposure to radiation etc?
The MRI is proving to be a valuable tool for examining the muscle and determining if there is scar tissue and/or fat developing. There is a study/trial being conducted that is seeking to prove the validity to the FDA so that maybe one day they can use MRI instead of biopsy to prove a drug is working. The procedure lasts about 1 hour (shorter if your son is very still) where your son goes into a "tunnel" like machine (his head will not be in it, just his torso and legs) and he must lay VERY still. They give him goggles to wear that show him a movie of his choice. They do have a movie selection, but you can bring one from home if he has a favorite. There is no pain or needles involved in the muscle MRI, but the MRI machine is LOUD and does bother my son some. Your son..and you if you stay in the room with him...will be given ear plugs (he then wears headphones to hear the movie) to help soften the noise. There is no radiation as it is magnetic resonance imaging (MRI) and is all done by magnets.
Now, he will eventually need a heart MRI (around age 8 or 9 normally) and that does include an IV injection so that they can put dye in to see movement in the fluid of the heart.
Hope this helps...and good luck!
Lori, is heart MRI done only if the echocardio shows any abnormalities or your neuro/cardio recommend it anyway?
For cadiology, we've never had an echo at Cincy. Only EKG and MRI.
MRI is not common practice at this point, that is why they are not mentioned in the standards of care. One well known cardiologist told me a few months ago that if you know what to look for EKG, ECHO would suffice. Of course, MRIs are done everywhere in the US with success.
I just think there is a thin line b/w what tests need to be done and what is done in many centers. Cincinnati might be doing more than needed, it is good in many cases and not so great in others. My 3.5 year old son had a test done there in December, they did not know what the normal level should be at his age and in fact they did not even look at the appropriate test. However my son is quite young and that test is used with success in older children. So when the results came back they were not sure how to interpret them, that made us very anxious and we had to talk to additional doctors only to find out that the test performed by Dr. Wong/Cincinnati was not appropriate for his age. It was a blood test, not cardio. Hence I would take everything with a grain of salt.
amit gupta said:
surprsing because the 'standard of care' document on PPMD (from LANCET) does not mention cardiac mri at all....only EKG, ECHO and HOLTER.