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    • #15816
      Deborah gray

      I don’t know if I have ALS awaiting follow up from neurologist who wants to see “ how it goes” I started with muscle twitching last May 2019 and prior to this slurred speech on and off. It all started with buzzing in left foot and then calf kept twitching none stop for 14 days then it spread in a pattern to thigh left side left arm and then to right side. It still continues today. I have painful muscle spasms in neck upper back chest wall and lower back. I also have bone pain and been hospitalised in the last 2 months with severe low phosphates and need infusions. My neurologist wants to see how it goes and review me next year !

    • #15819
      Dagmar Munn

      I am sorry you’re dealing with such challenges living with those types of symptoms – – while being told to “wait and see.” Who knows why some neurologists take so long… tests are unclear, hesitation to deliver a serious diagnosis, a sense of protecting the emotions of the patient, and on and on.

      Meanwhile, Deborah, I hope you will find helpful information, support, and resources here in the Forum. We’ve all experienced that period of waiting and wondering. Feel free to ask questions and use our shared tips.


    • #15849
      Marianne Opilla

      Maybe consider a consult with a different neurologist.

    • #15860
      Deborah gray

      Yes I have asked and I’m waiting for a second opinion. I get visual twitches and some times  twitches that are happening and I don’t even feel them ? The other weird symptom is my stomach muscles bunch up and look like a bag of worms.  I also get buzzing sensations in my feet and leg? I’m so tired all the time and have weakness in my arms and can’t hold a hair dryer and do my hair etc so had it all cut short. Struggle with buttons but I don’t have well hard to say no muscle atrophy ? I have lost wait though unintentionally. Can twitches and do they go on for months as mine started last May but we’re in a pattern started left side first. Then made there way round left side and then to right side etc. They are so frustrating as relentless and never stop. Do they ever stop ?

    • #17651

      Hi Deborah,

      I also haven’t been diagnosed yet and was wondering whether you found out if it is ALS ? of course I hope it’s sth else more treatable.


      Best wishes,


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