lyssie

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Viewing 11 posts - 1 through 11 (of 11 total)
  • #77276
    Re: Auto-somal Dominant Emery- Dreifuss Muscular Dystrophy

    Hiya,

    I don’t have EDMD, but, wanted to wish you a warm welcome to this site ;)

    Lyssie xx

    lyssie
    Participant
    Posts: 15
    Joined: 18/06/2011
    #85968
    Re: Breathing issues

    Hiya Gill,

    I’m sorry you’re finding your breathing considerably worse in this weather :(

    I am too and find myself gasping for breath. Trying to take my inhaler but can’t breathe in enough to make it effective. :oops:

    I hope neuro and cardio go well, I, personally would mention it xx

    lyssie
    Participant
    Posts: 15
    Joined: 18/06/2011
    #79660
    Re: What Is On Your Ipod Today

    Hiya Gill, ;)

    I am just thinking, do you like Maroon 5? They have a new album out :) I also like a bit of Newton Faulkner. 8-)

    I’m listening to Katy Perry today.

    I had a bit of an iPod clear out the other day… Went from 11gb to 5gb :lol:

    lyssie
    Participant
    Posts: 15
    Joined: 18/06/2011
    #84702
    Re: Another EMG!

    Hiya AMG, :D

    Thank you for your reply.

    You’re so right, I think they don’t know what they’re looking for with me but they are looking for something, thankfully Myopathy narrows it down a tad… :roll:

    I don’t mean to moan or anything, but I’m feeling a bit down in the dumps :( my legs are at the moment getting increasingly weak and fatigued :?: not sure how long they’ll continue to hold me up :cry:

    I was trying to not use walking aids for a while and was doing really well but I think I’ll have to ‘admit defeat’ and go back to using my crutches. At least they’re pink :mrgreen: lol!

    Anyway. It’s 4:30am and I’m going to be shattered today :shock:

    Lyssie x x x

    lyssie
    Participant
    Posts: 15
    Joined: 18/06/2011
    #85949
    Re: My last, and saddest, update..

    I’m so sorry :(

    You are in my thoughts x x x

    lyssie
    Participant
    Posts: 15
    Joined: 18/06/2011
    #83689
    Re: The Appy Corner…..

    Ok, I have an iPhone and I’m not going to list the 80+ apps that I have but a few I really like.

    Whatsapp – it’s a messenger which is actually also available amongst blackberry and android as well as the iPhone. It’s brilliant. Me and my best friend (who has an HTC) use it. To me it doesn’t cost a thing as I get a text and web allowance when I top up so it goes onto my MB of net that I get so it’s not like I’m paying per day for the Internet.

    Whale Trail – its the brightest game I own on my iPhone. It’s rather addictive (for me anyway!)

    My Pain Diary – self explanatory.

    Angry Birds! lol

    Leap Sheep! :)

    Shazam – it basically listens to 30 seconds of any song and tells you what the track is. This is pretty awesome.

    It’s 5:21 am so I’m done lol xxx

    lyssie
    Participant
    Posts: 15
    Joined: 18/06/2011
    #79658
    Re: What Is On Your Ipod Today

    Amy Macdonald’s new album ‘life in a beautiful light’

    I love it :D

    lyssie
    Participant
    Posts: 15
    Joined: 18/06/2011
    #84701
    Re: Another EMG!

    Hiya everyone. Thank you for the replies they are very helpful indeed.

    I had my EMG and the neurophysiologist said that there were again polyphasic units, which was the point in the first EMG that showed the possibility of myopathy… I’m not sure what else in this EMG was found. The neurologist I saw didn’t think I have any muscular problems so sent me for this EMG to get a (and I quote) ‘bit of a flavour’.

    I also have had my CK levels checked so should get an appointment for the neurologist again soon (once pain management hand over my notes!). It’s a long haul as I’m sure a lot of you can relate!

    I was wondering what people’s views are on muscle biopsy and/or DNA testing? I may ask him if they’d be relevant to be honest. But we’ll see!

    I’m sorry I’ve not replied until now. Appointments here, there and everywhere lol. Anyway it’s almost 5am :o :shock:

    Lyssie xx

    lyssie
    Participant
    Posts: 15
    Joined: 18/06/2011
    #77794
    Re: What are you reading?

    I’m reading a book on my Kindle about sacro-iliac joints, :lol:

    lyssie
    Participant
    Posts: 15
    Joined: 18/06/2011
    #81275
    Re: Sciatic Nerve Pain & MD

    Hiya, I also exprerience bad sciatic nerve pain which I am putting down to my muscles :( I am on gabapentin for this.

    My legs can be exeptionally bad one day and a bit better the next, I also have tenderness, spasticity, general pain :?

    They really don’t think this is at all to do with my spinal condition and surgeries (scoliosis, resulting in 2 spinal fusions plus 2 other smaller ops on my back) xx

    lyssie
    Participant
    Posts: 15
    Joined: 18/06/2011
    #79638
    Re: What Is On Your Ipod Today

    I have Lana Del Rey’s album ‘Born to Die’ on :D :)

    lyssie
    Participant
    Posts: 15
    Joined: 18/06/2011
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