Muscle MRI

@miracle77 wrote:

Wondering if anyone has had an MRI of muscle. Been told I have to have one but since our bodies are full of them I am wondering which ones they will look at.

THANKS

Had one about 18 months ago. They did the fullest body scan possible, I remember having to
stay still for an incredible amount of time whilst it went the whole body length.

You have guessed it, inconclusive.

Hi,
I had both upper and lower legs MRI scanned late last year. I asked Prof. Bushby in Newcastle why they only took scans of the legs when other muscles are also wasting. She told me that “scans of other muscles are inconsistant and difficult to interprit”.
Michael

I had my legs scanned a year or so ago. It was a good way to spend a birthday. The most exciting bit was the fun we had getting me onto the trolley and into the scanner, as the hospital had lost track of where their hoist was.

The actual scan was very reminiscent of listening to Lou Reed’s Metal Machine Music.

And come to think of it, they still haven’t told me any results. I need to follow that up.

Hi,
I don’t watch ER but it sounds hillarious.
Michael

Good luck with yo0ur appointment in July. It will be a long day but hopefully it will be beneficial. Let us know how you get on.

Yes, good luck. I know what you mean about it being an exhausting day, especially if travel is involved. I normally clear the few days afterwards so I can rest and recover.

hope all went well and the drive down wasnt too bad

take care

cat

Thanks for letting us know.

Will be a frustrating time I know, that you are not getting exact and immediate answers. That sadly is
the way of the world and par for the course. That is the way things work out with the current methods of
testing. One consultant wrote to me explaining that although things are advancing fast they still
are basically only testing for levels of particular proteins or chemicals in any sample, usually
to rule in or out one particular diagnosis or theory. This in itself is an advance from previous
years when people were just left with incomplete diagnoses.

Getting my own latest set of DNA test results next week and just pleased they are spending so much time, money and
effort on me. Every step in the right direction will help us. Indeed one new piece of information could be the difference between getting a new treatment or vital coping strategy that could save a life or enable a person to remain
at work.

However frustrating, often it is good to stay positive that they are by now ruling out some
really horrible options and getting closer all the time. Maybe this or the next test will be the
vital one. Bad that you have had a couple of falls but good that it presumably did no major damage
and may lead to new physiotherapy options. I had a couple of falls a couple of weeks ago
and suddenly a new GP is taking an amazing interest and awareness. In MD world things
that seem bad often work out well in the end.

@miracle77 wrote:

Just thought I would tell you that my MRI of muscles in Newcastle wasnt helpful as suspected so more test on biopsy sample after all although they are not optimistic that they will be able to diagnose me anytime soon
On a plus point I have now spoken to my local Neuro in Glasgow and I am getting referred to a specialist Neuromuscular Physio after all. May have to wait a bit to be seen but just glad to see the right person. Been away at a conference this week and so missed my physio session with occ health and have now seized up again.
Best wishes
Gill

Sorry you have had another non diagnosis.

So very very frustrating.

They keep telling me how on these tests they are only looking for one or two things, like the level of a certain
chemical or a certain mutation on a certain gene. Reading between the lines it is just a needle
in a haystack thing.

Excellent silver lining that you are going to an MD trained Physiotherapist. They will be able to give
real, relevant and concrete help.