I believe I have ALS

Posted , 3 users are following.

For 5 months now I have been displaying symptoms and signs reflecting ALS.

Muscle weakness ,atrophy, spasms. Cramps fasciculations in both legs and arms. Difficulty swallowing and breathing, loss of voice. Serve weight loss of 50 lbs and chronic fatigue and constipation. All my blood work has come back excellent and gastrointestinal workup for constipationclear. I recently had a EMG, which the report said normal. I read that 40% of EMG give false negatives. With this rapid decline. I don't know what to do or will I ever find an answer! Help

0 likes, 13 replies

Report Reply

13 Replies

  • Posted

    I recognize you from the forum. I'd recommend getting a good GP and going from there. I have many ALS symptoms as well, fasciculations, weakness, scalloped twitching tongue, etc. Yet the doctors cant find anything wrong. I too have had a clean EMG and a hospital work up. But I'm getting set up with a neuromuscular specialist-thanks to my GP who wont rest until we have answers. Hang in there.

    Report Reply
    • Posted

      Yes, I have appointment tomorrow with my GP. I'm so tired of being told I'm ok when I'm not and that it's all in my head. Like I just decided to lose function over my entire body on my own! Thanks kira

      Report Reply
    • Posted

      Good-and if they wont listen get a new one, because I was told this was in my head at first too. I am almost 4 months in and feel like crap everyday and I am tired of it. 😕

      Report Reply
    • Posted

      I hear you. Tired of clean EMG no ALS. Then I'm told no, Clean Emg no ALS when you have no clinical symptoms. I will keep you updated and you do the same.

      Report Reply
    • Posted

      Just checking on you. Have you made any progress? None on this end. Don't see Neuromuscular specialists until February. Can't breathe nor eat solid food. Can't talk. Entire body trembles all the time and yet there's no urgency ! All appointments are two to three months away.

      Report Reply
    • Posted

      Nope..I dont even have an appointment set up yet-they said theyll call when they know (its been 3 weeks). I do see an ENT sooner though-hopefully next week. I had a bad bout of tongue twitching a couple days ago but today its hardly there so Im just so confused

      Report Reply
  • Posted

    Are you seeing a top notch neurologist?

    Report Reply
    • Posted

      They are not easy to get appointments with Neuromuscular specialists, it takes months and with a clean EMG, it takes even longer. At the rate of my deterioration. The coroner will give my diagnosis.

      Report Reply

Join this discussion or start a new one?

New Discussion Reply

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.