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Showing Visitor Messages 1 to 10 of 70
  1. ahurlbut
    03-11-2016 12:02 PM - permalink
    How do I PM you? Would love more information on BFS to ease my mind. Thank you.
  2. jram303
    08-16-2015 10:11 PM - permalink
    Hi Robyn.
    I was unable to contact you on Facebook. Wondering if you could maybe reach out to me on here? Having a really hard time dealing with these symptoms.
  3. jram303
    03-25-2015 11:01 PM - permalink
    Hello Robyn,

    I have read a lot of your stuff and it looks like you are well versed in the world of BFS. I am having a very vdfy hard time dealing with mine. I was diagnosed with early onset parkinsons. Then they said possible ALS. Now nothing but BFS. I just don't believe it. It has been really crushing for me I was in the psych ward for almost a month. Does it every get easier??
  4. ShadowJason
    11-02-2013 12:10 AM - permalink
    Hey this is shadowjason, u responded to a post of mine in 2012. I was the guy with a abnormal emg and twitching, I know there are prob 1000 guys like that on here lol...anyway I wanted to connect with ya. I was unable to do further testing for my condition due to cost, but it has been over a year with little change. Still twitching , still sore and rubbery legs. But I am still mobile.
  5. ValerieB
    10-24-2013 03:50 PM - permalink
    I'm only 25 and would love to go back to work. The twitches stop when I move and happen more when I just lay around. I have hardly any pain. I was put on lexapro for anxiety about a month ago...twitching is still hear though :/ I've had a MRI, CT, blood work as welk as chest xray...they say my twitching is just due to anxiety. I also get a shakey feeling at when.your really weak when you have a cold but that comes and goes. Any help or advice would be greatly appreciated. You really seem to have a great grasp on all of this...I had the fear of ASL as many have but I have no weakness of any of my muscles so I dont believe I do at this point. :) sorry in advance for all the typos I'm typing on my phone :) there's much more to all of this. I really appreciate any advice you have :)
  6. naynaydevil
    10-18-2013 07:01 PM - permalink
    Hey! Your still on here too?? How are you?
  7. Robynnblue
    07-27-2013 05:19 PM - permalink
    Cynthia..just sent you a fb request...Hopefully I got the rite person lol
  8. Robynnblue
    07-27-2013 05:17 PM - permalink
    Going to look for you on fb rite now soon :)
  9. cynkevtay
    07-27-2013 04:27 PM - permalink
    Also being new here I don't have exactly how this works. If you have any guidance much appreciated. Thanks cyn
  10. cynkevtay
    07-27-2013 04:15 PM - permalink
    Hi Robyn. I'd entertain any help or insight you have. I feel so lost and sad.., I don't feel I have control of my body.. You can email me at facebook me my name is Cynthia capicchioni. Thank you so much for being understanding.

About Me

  • About Robynnblue
    What's your relationship with ALS/MND?
    I am interested in learning about ALS/MND.
    If diagnosed, when was the diagnosis?
    State or Province


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  • Last Activity: 03-28-2017 08:49 PM
  • Join Date: 05-07-2010


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