Viewing 7 posts - 1 through 7 (of 7 total)
  • #74308
    MRI scan of leg muscles

    I’ve recently had an MRI scan of my thigh and calf muscles to see if I can get a more definite diagnosis than congenital myopathy.

    It’s years since I’ve had any kind of investigation, so I’m feeling pleased that I’ve not been forgotten! It was explained that rather than taking another biopsy that could be either unaffectd or too damaged to tell anything, they look at the whole muscle.

    Well I’ve just chased up the results and there’s been a letter from my neuro to newcastle, and a reply which have been copied to my gp. I’ve made an appointment next week to find out the content. I’m not expecting much, probably the usual ‘we still don’t know’

    I’ll post again if there’s any progress xx

    redpanda
    Participant
    Posts: 45
    Joined: 26/09/2010
    #84845
    Re: MRI scan of leg muscles

    @redpanda wrote:

    I’ve recently had an MRI scan of my thigh and calf muscles to see if I can get a more definite diagnosis than congenital myopathy.It’s years since I’ve had any kind of investigation, so I’m feeling pleased that I’ve not been forgotten! It was explained that rather than taking another biopsy that could be either unaffectd or too damaged to tell anything, they look at the whole muscle. Well I’ve just chased up the results and there’s been a letter from my neuro to newcastle, and a reply which have been copied to my gp. I’ve made an appointment next week to find out the content. I’m not expecting much, probably the usual ‘we still don’t know’ I’ll post again if there’s any progress xx

    Sounds interesting.

    Glad they are doing something logical. Let us know.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #84846
    Re: MRI scan of leg muscles

    i had an mri scan on my legs last year and finally got a full diagnosis of LGMD2A . I got offered another muscle biopsy as my last one got mistakenly defosted , hope you are as fortunate and get your full diagnosis too

    rachelmurphy
    Participant
    Posts: 65
    Joined: 02/02/2011
    #84847
    Re: MRI scan of leg muscles

    @redpanda wrote:

    Well I’ve just chased up the results and there’s been a letter from my neuro to newcastle, and a reply which have been copied to my gp. I’ve made an appointment next week to find out the content. I’m not expecting much, probably the usual ‘we still don’t know’

    I’ll post again if there’s any progress xx

    Good luck. Hopefully that “We still don’t know” will become a “We can rule out these” and be a step closer.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #84848
    Re: MRI scan of leg muscles

    I am always surprised to hear about people spending years in the dark with regards to diagnosis. I was told definitely the first time, within a few months.

    I really hope the medicoes can finally nail down your condition and give you a little peace of mind. The waiting must be awful. :(

    All the best
    Ranald

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #84849
    Re: MRI scan of leg muscles

    Thanks for your comments :)

    I now have my scan results. There’s no definite diagnosis but a few possibles. Pompe disease being the first suggestion, but I’ve looked this up and it really doesnt sound like me. LGMD2A is also suggested, but as my CK level is normal both these conditions are unlikely

    I’ve got a follow up appiontment next month when I’ll be tested for pompe, and Newcastle say they’d be happy to see me again so I’ll pursue that.

    Hopefully I’ll get some answers soon!

    redpanda
    Participant
    Posts: 45
    Joined: 26/09/2010
    #84850
    Re: MRI scan of leg muscles

    I’ve recently had an MRI scan of my thigh and calf muscles to see if I can get a more definite diagnosis than congenital myopathy.

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