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  • Topics

  • Posts

    • I’m the dame rabbit hole, left hand feels tingly & weak for 3 weeks and now left foot same feeling. Can still do everything normal I just feel off, the anxiety doesn’t help but I don’t know what’s what at this point. Left arm just gets tired. Twitching started in left side but now everywhere mostly still left. Praying for you and that my neurologist says everything’s all good. All I know is even if we do have worst case scenario we should be living our best life in the good years we have left. Go grab a beer, watch a funny movie with your family, if it’s as bad as our anxiety tells us hell we only have a couple years left. Fuck it
    • My anxiety is terrible. I’ve got so many things feeling off with me it’s exhausting.  My head feels wobbly, I have a headache, I’m dizzy, I’m tired, not sleeping at night, I feel my eyes aren’t tracking even though I just went to the eye doctor the other week. I’m just feeling OFF and I’m so tired of it.  I was checked for ovarian cancer last week and it was a clear test but I did have fluid in my pelvis from what they think is a cyst that ruptured.  I used to have very bad anxiety about brain tumor and it has recently flared back up, I feel I have all the symptoms of that.  My doctor DC’d the medicine I was on for anxiety and switched me to Effexor but I haven’t started because I really hate meds.  Ive went to have my blood drawn 5x because I’m SURE I have a thyroid issue or hormone imbalance but apparently my thyroid isn’t far enough off to be treated.  Im so tired of living like this, daily. Im convinced at this point it will never get better. 
    • Just to chime in on the brisk reflexes.. I went to my neurologist yesterday and said I had been self testing my knee reflexes and they were really hyper reflexive. She asked me to show her how I’d done it and I had been banging them with my phone. She laughed and said “well of course they’re going to look like that when you hit them that hard”. She used her reflex hammer and did different variations of force to show me that the harder you hit them the more “brisk” they’ll be. Then she used her finger and tapped on my knees and said “now if I could elicit your reflexes by just tapping with my finger.. THAT would be hyper reflexia and I would be concerned.”  I also was convinced I had hand atrophy and she looked at what I SWORE were dents on the top of my hand and wasting away palm muscles. She tested my finger strength and said if I had atrophy my fingers would have collapsed in but they didn’t. Losing muscle=no strength to keep your hand open.  I have body wide twitching (even in uhmmm... some interesting places... to put it appropriately), hand cramps, leg cramps, arm cramps, feet cramps, and a feeling that my hands just aren’t working right. I feel like my legs stiffen up and they might collapse. I am FAR into the ALS rabbit hole and I’ve consistently told myself the second I have my EMG done at the end of April (if it’s clear god willing) I’m climbing out.     
    • I'm staying off! And as long as you know your stuff then I'm going to trust you! Thank you! And like the true hypchondriac that I am I'm already moving on to another fear bahahaha 
    • What ended up being the cause? 
  • Recent Status Updates

    • Lucid

      · 0 replies
    • madtowncard  »  Gilly

      Hey, it's been a long while since I've posted but I'm back. I wish I could report that I'd been better but that's not necessarily the case. I've been ok but now my battle is tapering off Klonopin. I dont know what happened to the site but I'm glad it's back up I cant tell you how much I value this.
      · 0 replies
    • gale  »  Gilly

      Hi Gilly.... I think I have discussed this with you before. So worried about this burning skin which I have had for a few years. With me it all over.... my arms, legs, face, some areas of my back.  Drives me crazy and again it freaks me out about diseases. Dear God how long can so many symptoms persist. Been over 40 yrs.  Can you help me!!!! 
      · 1 reply
    • Lucid

      Watch "Ashes Divide - Forever Can Be (Lyrics)" on YouTube
      · 0 replies
    • cbhaga01

      Hi everyone!  I've just launched my new blog:


      Feel free to check it out.  Or don't.  I won't know anyways, unless you leave a comment, because I have NO idea how the stats feature works in Wordpress.
      · 0 replies