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  • Hi Luke
    Was just thinking about you and see you pop in once in a while even though you don't post. Hope you are doing ok
    Best wishes
    Nikki
    Hi Luke,

    I was wondering if you had any updates as to a potential diagnosis. I am in the non-diagnosed boat and I had a fair number of tests and potential conditions evaluated. My neuro is fantastic, he is one of those internal medicine at heart neuros that doesnt leave a stone unturned.

    Cheers, Matt
    Hi Luke I read your story and saw you're going through some neuromuscolar issues and you're still undiagnosed. Some of your symptoms are similar to mine and I'm really interested in your story couse you're so young too. I sent you a friend request...If you don't want to accept it I'll understand, no problem.
    Hi Luke,
    Was wondering how you are doing and were any closer to getting some answers?

    I saw a muscle specialist about 2 weeks ago and she was not sure about anything mitochondrial although she is requesting I have a muscle biopsy, a single fibre emg, and another mri scan of the spine. She did mention myasthenia and I think thats why she wants to do another emg .

    I remember one of the things that you mentioned was that you had some issues with thinking and memory that the co enz q10 helped? I have noticed some difficulties with word finding eg naming certain objects and some memory issues. I had been on pre-gabilin for neuro pain and health anxiety but am in the process of tapering of it as aware memory problems can be a side effect.

    I don't know how you feel at times but since this all started I just seem to focus in on different symptoms. I have tried to increase the amount of gentle exercise I do but I do find not knowing really excrutiating.

    Best Wishes David
    Yes from what I have read it can literaly affect every part of the body. I just had a moment of panic when I saw that post on a diagnosis changing to als. All of this is still scary, not knowing what to expect or when. Well its all good, I do what I can and I'll figure out the rest. Thank you for responding to my worries. You have a Merry Christmas. I wish you peace.
    Hi Luke,
    Just dropped in to wish you a Merry Christmas. My dad who has ALS is coming over Christmas Eve to celebrate with us. His caretaker who is a family friend is coming over too so will have help if we need it. I'm working Christmas day at the switchboard at our hospital from noon-6pm and then I'll go over to my in-laws. Will probally stop by my dad's Christmas morning or my husband and kids will stop by and see him while I'm working. Take care, Kim
    Hi Luke,
    How is your job going? My dad is back at his home for at least awhile. He was sick with the flu or something for a few days. He got a IV Monday of fluids and is doing tons better now though. I am so thrilled to see him. Otherwise, I'm just busy getting things ready for Christmas. My daughter who is 15 is easy to buy for but my two sons who are 15 and 9 are hard. Want to get them some stuff other then more video games. Take care, Kim
    Hi Luke,
    Just stopped by to say Hi! I survived taking my daughter to her first concert of Justin Bieber in St. Louis Saturday. She was in pure heaven. He did put on a good show though. I never felt so old in my life. Lol Hope they find out what is all going on with you and you get some relief soon. Take care, Kim
    Hi
    Iam doing good. This medication has been a god send for me. How are you? When do you here on the biopspy? I hope you get an answer or diagnosis. Even though there isn't anything that can be done for me as in cure, it was a blessing knowing. Now I can figure out how to work around it and still have the life I want. I hope only good things for you. It is nice to talk to someone who knows what I am going through even a stranger. thank you.
    Have you sent up a google alert for mito? I have, that way any new info that comes out shows up in my email.
    Hey
    No, I don't have respiratory problems so it never occured to me to ask. Have you had your muscle biopspy? The mestinon is working great for me and at the moment I am happy. My doctor did order a ekg because mito can cause heart problems but I haven't heard on it. He also is checking my thyroid again. I go to the doctor again in 6 months unless there are problems I can ask about the new drug then, but I am sure you'll see a doctor again before me. Keep me posted.
    Hi
    I went to my neuro last monday and explained about the fatigue and he said that a drug used for myasthenia gravis has worked for some people with mito. It is pyridostigmine (mestinon). I have been on 60mg 3 times a day and so far it is great. My energy level is while not totally back to normal I can do more than before. Very few side effects.
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