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Dignify

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  • A
    My situation is worse, but until I have a diagnosis I don’t want to share anything on this forum. I honestly wish I could see your neuro, because I’ve lost faith in mine. I just created a separate email account so if you want to talk please feel free to email me and I can fill you in on what’s going on with me, and you can update me on what’s going on with you. The email is [email protected]
    A
    Hey! Sorry I haven’t checked in on the forum for a while. I’m so happy to hear that you didn’t have many changes in your recent EMG. That is great news! I wish we could exchange emails so that we could talk more freely, as I am not that comfortable with visitor messages at this point, and I don’t want anyone knowing my personal email. When do you start your study? I really hope they can find another diagnosis for you! I hope you and your family are doing as well as possible!
    A
    Hi! I hope you are doing well. I just wanted to let you know that I ended up going back to Dr.Stino for a follow up and it was such a better experience than the first time! I didn’t see the medical student this time, only my doctor which I think made a huge difference. He actually listened to me and gave me a thorough exam. Bad news is, he confirmed atrophy, clinical weakness in my toes and I now have brisk reflexes. He is going to perform an EMG next Thursday. Thank you for your words of encouragement to not give up!
    D
    I will think of you and pray that something else come up!!! Or at least that your progression have some remmision for some longer time!!
    D
    Trust me I try so hard. For how long have you been losing your strenght? Is it located only in that arm, no shere else? My whole one side of body is affected from the begining, but i don’t have mesurable weakness. Thank you very much for answering my questions! You are so nice, yet you for now have bigger issues than myself!
    D
    Well I’m still pretty scared, after all these years it seems like my atrophy has speed up. I think it could be from me beeing nervous and depressed. But I can’t help it, when i see changes in my muscles, I can’t be relaxed. Did they have another emg on you? What did they say about that one fibrillation? How could it be inicative of active denervation, when it is only one? That scares me becouse i have only chronic denervation...
    D
    I have high amplitudes in some muscles (up to 8mV i foot muscles), but not detected fasciculations and spontaneous activity. Some neurologists say it is chronic. I dont know if that one fibrilation they found in your exam has any meaning as in active denervation? I’m scared since I have chronic changes that It will pop up anytime now that I have something serious.
    Do you have copy of your last emg? Did doctor said he suspects ALS even before that last emg or what?
    D
    Hey, thank you very much for your answer. I thought that you said you only had chronic denervation, did you at first had only that or i misunderstood you?
    When did you have your EMG-s? Was all of them in that 3 year period time since you’ve got spasms, or you had 3 since you started with BFS 7-8 years ago?
    I have small shrinkage of my muscles on my right side of body my calf, my forearm, thumb muscle and even right side of tongue.
    I dont have cramps, only when I induced them in my feet.
    Those changes started from the begining when i noticed fascis.
    No neuro confirmed it yet, nor atrophy nor weakness, but i know something has changed.
    D
    There is active denervation and reinnervation. I have had 3 emgs, the first two didn't show anything but the last one was done after I noticed the atrophy. All the muscle groups in my left arm, shoulder and hand are starting to atrophy. My thumb is the worst of it as the muscle at the base has all but flattened out. For the most part though I am doing pretty good. Still go to work, mow the yard and try my best to remain positive. My nuero believes I have benign fasciculation syndrome and as a completely different diagnosis ALS on top of it. Even if that's not what it is it's definitely chronic and progressing and as of now rather slowly. What kind of changes do you have in yours muscles? The first thing that really scared me was my thumb locking in place, then the spasms started followed by atrophy. I also noticed I couldn't lift the same weight with my left arm. Hope all is well, if you have any other questions don't hesitate to ask I am an open book.
    D
    Hello! I myself have twitching problems for 3 years now, but I have changes in muscles from the begining (but my changes are not confirmed by neurologists) my EMGs have some high amplitude in some muscles and reduced recruitment but no active dennervation. How come they are leaning towards ALS without active denervation on EMG tests? How are you now?
    A
    It is too much to post in a visitor message, but yes, I have other problems. I can’t walk or stand for any extended period of time. I wouldn’t dare to even try to run. If I walk for any length of time, the next 2 days I’m off my feet because of severe fatigue and achy/sore muscles in my leg and foot. I’ve been twitching for 2 years but the weakness in my foot started in July of 2017
    A
    So, the appointment did not go well. The soon to be neuro was the one who took my history and did my exam. She seemed flustered and didn’t really know what she was doing. Most of our conversation was about my past history, rather than my actual symptoms now. Her exam was not thorough at all, and I was fully clothed. When Dr.Stino came in, he was in there for 5 minutes, and seemed like he was in a rush to get to his next appointment. When I tried to explain some of my symptoms, he was very dismissive and just changed the subject. He didn’t do an exam of his own, or even look at the atrophy in my foot/ankle. It seems that because I’ve had one EMG that was essentially normal (not clean), everyone dismisses my progressive, unilateral atrophy and weakness. So I was very disappointed, and wish he would have taken the time to listen to my symptoms and give me a proper exam. I honestly don’t know where to go from here. Thanks for listening and sending you my best wishes
    A
    Thank you very much for you reply and sharing your experience with me, I truly appreciate it. I hope they can get to the bottom of what is wrong with me, and I pray that they end up finding a different cause for your issues as well. Thank you, again.
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