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Showing Visitor Messages 1 to 10 of 27
  1. sjtom
    01-08-2019 07:18 PM - permalink
    Hi, how are you any updates?
    I’m still twitching like mad. Another emg this week.
    No real weeknees but my legs feel rubbery?
    They say it’s anxiety, I’m having a hard time believing it.

    I still have bathroom issues- but drs can’t figure anything out .
  2. April E
    10-02-2018 07:34 PM - permalink
    April E

    I forgot to mention that i seem to be hoarse all of the time and continually have to clear my throat while speaking, which is new. Also, i occasionally have such terrible reflux that it actually flows up into my mouth at night, this is also new and started well after the hoarseness began. I tire easily and become short of breath with minimal exertion, no headaches so far.

    Keep me posted with your s/s!
  3. April E
    10-02-2018 06:50 PM - permalink
    April E
    Hi Kim...

    I have muscle atrophy between my thumb and index finger on the back of my right hand and i can see fasiculations there that i cannot feel. My right arm is weak and I have frequent aches in both forearms. I have muscle twitches in my elbows and more recently in the palm of my right hand between my thumb and index finger. The front of my neck cramps on both sides, more so with yawns or sneezes. Both legs twitch, even my arches in my feet sometimes. It's worse after exercise at times, other times it doesn't seem to matter. I've only had the one EMG and NCV this spring. I think you can relax more since you have had several negative ones.

    Keep your chin up!

  4. Lostandalone
    10-02-2018 03:19 PM - permalink
    Hi April,
    Yes, it all is scary. I'm doing better emotionally, but still have symptoms. My throat is most notable and hurts to talk which has been going on since mid June with no improvement and worsening. I wake with a headache every morning. I have non-stop twitching and focal twitching in my right knee area and thigh. My finger joints ache with stiffness as well as in my feet/legs. I have been doing gluten free for the past 2 weeks.

    What are your new things you are noticing? I will look into the theracurmin as well. I hope you are doing okay as well.
  5. April E
    10-01-2018 11:20 PM - permalink
    April E
    Hey Kim...

    I see you are back lately. Are you ok?

    It's scary, isn't it? I've been noticing new things lately. Sigh.

    I did start theracurmin. I figure it can't hurt, anyway.

    J hope you are ok.

    Hang in there...

  6. April E
    09-21-2018 12:15 PM - permalink
    April E
    Hi Kim,

    So glad to hear such reassuring news! I try to stay away from the forum, but continue to allow myself to be drawn back here. I am working with a doctor regarding my positive Lyme titer, she is concerned that i may have co-infections. I also have Lupus (which i have had since my 20's and has been relatively benign), and Hashimoto's disease. The doctor wonders if the fact that I've had autoimmune diseases for over half of my life might be causing some of my symptoms, which is similar to your doc's theory.
    I'm going to focus on anti-inflammatory foods and supplements as well. I have no way to send you my email address as i don't have private message privileges, but i will check here from time to time to see if you have updates.

    Take Care! :)

  7. April E
    09-16-2018 10:11 PM - permalink
    April E
    Hey Kim,

    I'll be thinking of you tomorrow. I hope you get reassuring results from your EMG. Are you going to have a nerve conduction study, too?

    I've been trying to do everything i can to challenge myself physically while I still can. I guess that's a great philosophy to embrace regardless as none of us knows what tomorrow will bring.

    I also started an antidepressant which has helped tremendously.
    I am glad your coping has improved as well.

    Loads of luck!
  8. April E
    09-16-2018 02:35 AM - permalink
    April E
    Hi Kim...

    I continue to have symptoms as well, some of which are worsening with time. I haven't followed back up with the neuro as of yet. Please let me know how your EMG goes on Monday. I am going to start taking theracurmin in addition to my current meds and am looking at an anti-inflammatory diet. I believe it can't hurt.

  9. April E
    09-11-2018 01:42 PM - permalink
    April E
    Hi Kim...

    Just wondering how you are doing? I've noticed you haven't been on here as much, so I hope that means that you've been improving!

    GOD bless you,

  10. sjtom
    08-21-2018 09:09 AM - permalink
    Hi, sorry this site is a little confusing- I didn’t see you message.
    I am still having the same symptoms but had another emg that was clean even though I twitch constantly.
    Another private symptom I didn’t post but since our symptoms are the same I will mention- my bathroom habits are messed up at the moment.
    Either constipated or exact opposite.
    I finally saw a dr last week that said they gluten free for 2 months and well crazy but my twitching has been a little less and I actually had a normal n2 today.
    But still very scared. Too much varied info online.
    How are you?
    I thought about posting on the site how I felt a little better from excluding certain foods but still don’t feel certain. Look up celiac and look and the symptoms.
    Crazy similar?

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  • About Lostandalone
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