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  • Hey Tb12, are you diagnosed yet? i'm trying to know what's wrong with me... and i see a lot of us has a few things in common... twitching, burning sensations, vibrations, weakness... For instance.. i got denervation in calves which.. they think is from s1 root irritation.. and also cubital /carpal entrapments ... yet i think i'm progressing because of my right foot is giving me trouble... also had some proteins high in blood test..!!!! now waiting more examss!!!
    Hi they found some fibrillations and twitching and myotonic discharges in all the muscles tested, they said I may have neuromyotonia so I had a blood test to see if I have antibodies against potassium channels. I'm still waiting for risults. They said my emg were not so bad cause my motor units were normal but neuromyotonia usually doesn't cause the muscles wasting that I have.....so still in Limbo, I have to contact the clinic when I receive the results. What about you?
    Hi, I'm going to have some tests on 23 and 24 of May in a specialistic clinic. Symptoms are slowly getting worse: twitching everywhere, stiffness and weakness in all body....I've also developed vision problems like blurred and double vision....don't know what to think, I hope the clinic will give me answers. What about you? wishing the best to you too!
    Oy, oy, Tb12! No, unfortunatly no big news yet. I will have an appt in mid July, in a well known hospital for nerve issues and stuff. But stills its not an specific ALS clinic. I am wondering if I should seek one of those? What is really stressing me out, is that things progress that brutally fast. It s not like that I am really that much weaker than 3 weeks ago, but things are so more painful. The joints and bones pop and do "crispy" sounds. And the muscles are freaking twitching and sometimes it feels as they were beaten up with a Schnitzelhammer. Man, this situation sucks... sad thing about this hole crap is that I start loosing hope that it might be something reversible
    What about you? Any improvements?
    all best, D.
    Hi there, I just wanted to let you know that me too I had a dirty Emg but the neuro said no ALS based on clinical exam and EKG results. My guess that emg's can be dirty but point away from als. It's a test that can reveal many conditions and must be interpreted by a neurologist. One thing that I noticed with my symptoms is that when I squat, my quads fasciculate a lot. I showed this to the neuron and he emg'd these muscles and found nothing! I think his neuromuscular thing is more complex than we thing. Do your legs fasciculate (wave like) when you squat? Cheers, Matt
    hi tb12 im in your boat too- emg showing problems weakness in legs can only walk 10 mins
    pretty crap i know but there are a lot of us here
    Hey kiara, thanks for sharing that with me, I know none of this is easy. The best thing we have at the moment is each other. I too have recently been hit with the dreaded weak, stiff, shaking legs and can barely walk myself. I started with pain in my ankle in the morning. The fact your emg just showed twitching I think could be a good sign. Mine showed chronic denervation however the neuro's don't seem to care.. Which I find really odd with my symptoms. I am going to push for the Kennedy's blood test. Please keep me updated and talk to me anytime.
    It all started last spring with weakness in feet and ankles while standing and walking and widespread twitching....I went to the neuro that found that I had very brisk reflexes in all four limbs...I had a lot of test done: MRI of brain and spine, blood tests, emg. Emg only showed fasciculations but nothing else so I was put on wait and see. My symptoms got slowly worse to the point that now I cannot walk for more than 15 minutes couse my legs get very weak, stiff and heavy and shake when I climb or go downstairs. I had my last appointment with neuro on february...he thinks I could have something related to upper motor neuron but he's not sure so he wants me to have a day hospital to repeat all the tests. I'm waiting to have this day hospital hoping it will give me some answers. It's not easy couse I was a very active person and now I can barely walk so it really helps me to talk to people like you that understand my feelings..thank you
    Hi Trent, these neurological issues really suck....they are complicated and rare and it's often hard to have a dyagnosis in a little time. I really appreciate to talk to you, I'm having symptoms for almost one year and are getting worse...I'm waiting for having a day hospital in a specialistic clinic. I read your story and I think it could really be Kennedy's disease, keep me posted. greetings from Italy
    Hey Trent, keep me posted on your progress. Kennedy's was one of the possibilities mentioned by my neuro but I don't have gyno, so I am wondering about that. But I've been having symptoms for 6 months and have an appt in a couple weeks. I want to get tested. Being in limbo sucks but it beats having an ALS diagnosis. I have to remind myself of that somtimes. Good luck. Paul
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