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Showing Visitor Messages 1 to 10 of 15
  1. GregK
    04-25-2018 01:36 PM - permalink
    ♥ GregK
    Tim, that's not exactly true, you did chime in that DIHALS thread.

    The one with the anxiety stricken woman?
    ---------

    Putting this aside and in all seriousness.

    Please consider updating the RCH4 thread with your experiences now that you've begun.

    Many people read that thread and your contributions would be welcome.
  2. WeirdTim
    04-25-2018 12:54 PM - permalink
    WeirdTim
    Hello Jenny, thank you posting on RCH4! For the record, I am not back to posting on any ALS forum because we as PALS and CALS don't need bullying and harassment from moderators of all people. If you'd like to private message and s5sy in contact, I'm on Patients Like Me as WeirdTim. Take care!
  3. jalburquerque
    12-18-2017 09:12 AM - permalink
    jalburquerque
    My mother is 66 years old with the bulbar, my parents not want tracheotomy :(, she is already drowning but she moves her arms and legs perfectly, I think it is similar to your case, how about the experience of tracheotomy? Do you have a 24 hour respirator? Have you lost more mobility? kindes regards.
  4. rose
    10-28-2016 12:00 AM - permalink
    rose
    Is that one of your grandsons in your profile photo? He is just too cute! Let me know how you're getting along :)
  5. generoberts50
    05-25-2016 03:21 PM - permalink
    generoberts50
    Part 1

    Thanks for your reply Jenny. I appreciate your help. Like I stated before, I appreciate everyone on this forum and I can't wait until the day that this disease is cured!

    I know you you can't give me any medical advice. Truth be told, I'm just really scared right now and I wanted to find someone to talk to about what I'm feeling. I don't mean to bother anyone and I feel guilty for even being on this forum, but my fear is getting the best of me.

    I'm 29 years old and I have two kids that I love with all my heart.
  6. generoberts50
    05-25-2016 03:19 PM - permalink
    generoberts50
    Part 2

    Over the last couple of months, I've had twitching in various parts of my body. It started in my eyes (5 months ago) it went away (so not sure if that was related) but one month ago I started getting twitches in various parts of my body. My arm, my legs, feet, abdomen etc. these aren't too frequent but they do happen. I also feel a constant buzz in my right foot

    To make matters worse after reading about this disease on the Internet, I started feeling other things. Like for example, after I eat I notice that I sneeze more then usual or have to clear my nose. I've read somewhere that can be a neurological sign. I also burp a lot! After eating. (Not sure if this has anything to do with anything) but I've noticed frequent burping.

    My Dr. Tells me not to worry, because of my age and due to the fact that I have no signs of weakness. But my Dr. Also didn't run any tests. He just tells me that twitches without weakness are no cause for concern.
  7. generoberts50
    05-25-2016 03:18 PM - permalink
    generoberts50
    Part 3

    At this point, I guess my question would be if any of this sounds familiar to you and what would you recommend for a young scared father of two to do? I want to be positive, but the fear is impacting me in a bad way. I feel down most of the time.

    Thank you. Sorry got the long post
  8. generoberts50
    05-16-2016 04:40 PM - permalink
    generoberts50
    Hello Jenny, I am new on this forum. I have come across some of your post and would like the opportunity to ask you some questions if that is okay with you. I am 29 years old, I live in California and I have been having some scary symptoms lately. I have young kids and I am terrified of what it can mean. I also realize that likely (according to statistics) I may be overreacting, but this fear is paralyzing my life and I just need some help and advice. Let me also say that I am extremely thankful to everyone here in this forum and I hope for a cure to this disease! I pray for a world without ALS and I mean no harm or no disrespect whatsoever. I am just scared. Thank you
  9. LeaMoore
    03-22-2016 07:27 PM - permalink
    LeaMoore
    Thank you for the response. It's good to know there is a "life" after. I'm so glad that you are happy and able to still live a full life. �� I wish you all the best.
  10. LeaMoore
    03-19-2016 04:27 PM - permalink
    LeaMoore
    Thanks for taking the time to message me.

    Yes. I wanted to believe this whole thing was anxiety, but recently (well, hard to say when, because it seems slow and fast at the same time) I have had lots of left shoulder/arm weakness, to complement everything else. This is the same side I have the most hand atrophy on. And I'm getting fasiculations focused there. My last EMG showed a "mild" interference pattern in October in that arm, but nothing else of note. Now with the weakness I'm waiting to see the neuro. But I'm scared and I'm pretty darned sure that it doesn't bode well.

    And my shoulder aches after I try to use it. (When use, I mean "regular stuff" like putting arm in clothing, etc.) So does my neck on the left side. I think that some muscles are getting strained trying to help out the weak ones.

    I don't know what I expect you to say. Anything would be appreciated. How it started with you, etc.

    Thank you again.
    Lea

About Me

  • About jennyinfrance
    What's your relationship with ALS/MND?
    I have been diagnosed with ALS.
    If diagnosed, when was the diagnosis?
    06/2013
    City
    Savignac Ledrier
    State or Province
    Dordogne
    Country
    FR
    Biography
    I have Bulbar ALS. I love life & will do everything possible so I can see my grandsons grow up.
    Occupation
    Graphic Artist
    Interests
    Painting, metal detecting, reading, snorkelling, travelling.

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  • Last Activity: 07-07-2018 11:36 PM
  • Join Date: 02-12-2015

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