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  • Hi matt,

    I just read your last post.


    I'm a little in the same case as you, I'm not especially afraid of the ALS but of course I would like that what I have is not this disease, if you want to know my medical history will see on my profile.
    I am so exhausted today that I can not work anymore.
    Hi Matt, I read your thread. I'm sorry you are going through so much. Although your post sounds similar to me in a very small way, my symptoms are very much different in others. I am no way an expert on these things but the advice you were given so far sounds pretty good.
    I had hyprereflexia noticed by my PCP in 2006. It continued to get worse from there. Now for some strange reason my reflexes are listed at a 2 or 1 now. I wish the doctors would tell me why. It seems the weaker I get the reflexes reverse, weird! Although my doctors call my muscle weakness 'muscle fatigue' at this point, there are tasks I can not do now- getting up from sitting/kneeing on a floor, I must hold on to something to help myself up.
    I definitely can relate to the anxiety over health symptoms. I'm hoping the doctors can find something to help you. In my uneducated opinion it doesn't sound like ALS to me. Keep us posted and thanks for the update. My best to you!
    Thanks Matt, my Tarlov Cysts are not the cause of any of my issue I listed. I have multiple, bilateral, throughout my entire spine, not one large one. I have read about syrinx and many other cysts too. I saw an expert neurosurgeon, from JHH, who knows all about my cysts as well as many other types.
    What are your main symptoms? Does your symptoms prohibit you from living a normal life?
    Hi Matt ,

    Unfortunately none of my symptoms stabilized, they continue to get worse . All my muscles/limbs are thining out and I continue not to be able to build any muscles (flabby). I am slowly getting weaker, but still not a clinical weakness as of yet. I've noticed my symptoms starting about 2006, possibly earlier. I've had three Emg's but the last one was in 2014? (I would have to read back and check for sure). My memory is not as sharp as it use to be now. I'm hoping you find a fixable solution to your health issues in Your July appointment. My best,
    Still going pretty rough for me. The twitches are the worst. They are all over and exploding. Cramps. Thumb tremor that comes and goes. And my hands feel stuff and uncoordinated. Still no answers. But maybe Parkinson's? Waiting on seeing a movement disorder specialist and go from there. I'm sorry to hear that things aren't looking up for you. Keep me posted. I hope we can get some answers soon.
    Hey Matt,
    Hope things are looking up for you since October. I unfortunately have had no improvement at all with my symptoms. But I may have early onset Parkinson's disease. Still in the merry-go-round of diagnosis. But almost two years in and no clinical weakness seems to point away from ALS ( I hope). Sorry for the late response. I hope things really are going in a positive direction for you.
    ( continued) Which led to almost end stage testicular cancer. So misdiagnosis is scary. I was also misdiagnosed with early onset parkinsons back in September. I don't know how I am gonna move on with this, But reading your posts and seeing how you are getting along 5 years later from initial onset is inspiring to me to just keep on trying to enjoy life! Thanks again for your post man.
    Hey Matt,

    Thanks for the reply. I also live in Canada. Calgary to be exact. I unfortunately have let my anxiety and worry over this disease get the best of me and am currently spending time in the psychiatric ward. While I was here, I met with a neuro that works in the ALS clinic. He said that I don not have ALS. I am still having such a hard time letting it go. I too suffer from the constant fasics (which he did note) and muscle cramping. years of waking up feeling like I never slept, and and terrible excersize intolerance. I wouldn't still be worried if I didn't have some atrophy on the muscle on top of my left foot. The NCV stated deep peroneal nerve damage, which just scared me more. I really trying to get my anxiety in order, just scared to try and build a future if there isn't one there. I had cancer 5 years ago, and was misdiagnosed for a full year.
    Hey Matt. I was reading your issues and it's almost exactly like mine. Down to the excersize intolerance. I wish I could say that my anxiety was in check. Are you still diagnosed as bfs? I had an emg yesterday that came up normal, with isolated nerve damage to my left ankle/ foot. The two neuros I saw said no clinical or emg sign of ALS. I was recently misdiagnosed as having parkinsons. I also shake quite bad when I work out. I am capable of doing a fair amount of weight. But I am always shaky.
    Hey Matt, thanks for the commentary anf concern. I have no idea what to think anymore. I've had 2 dirty EMGs that were conducted 3 months apart (mostly active denervation in my right arm/chest). No progression noted between EMGs however. I twitch probably 20,000-40,000 times a day (small, tickle-like twitches to rapid, vibrating twitches to big thumpers that move the whole muscle). I cramp briefly if I engage a muscle to long or to hard. When the contraction releases in some of my muscles, they relax slowly and rapidly fasciculate as they lose their contraction. My symptoms are so weird and, like you, are consistent with numerous malignant and benign diseases. I've never been more scared and annoyed at the same time. I just wish they could tell me what it is.
    Anyway, I guess time will tell. I hope they eventually determine what is wrong with both of us so that we can seek treatment...and that it's not ALS
    Good luck to you. Let me know if you come to Houston.
    Thanks again,
    Luke
    Hi Matt,

    Your posts are so incredibly similar to mine. Down to just about every detail. I just want to know how you are doing. Brief background on me. 52 female. Virus early 2012. Twitching August 2012. 5 EMGS (one just 2 weeks ago) All clean (last one had "mild carpal tunnel" from nerve conduction study. September marks 2 years progressive weakness. No answers. Just wanted to see if you had any improvement or suggestions. So tired of living this way. 4 boys. Was so active until this hit. THANKS
    Matt, how did your appt go at the end of July? I have a lot of similar symptoms and EMG results as you, and was wondering if you are still doing OK and what the neuro said.
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