Conversation Between munecagirl22 and sya15
Showing Visitor Messages 1 to 10 of 12
  1. munecagirl22
    10-05-2011 08:50 PM - permalink
    munecagirl22
    thank you too. i do understand where they are and are not comeing from i just dont understand if they are so darn hostile towars the people on do i have als? they even have it here or why do they even click on my status if the ssee who it is by i got inboxed now iam someone else the other day..... haha... its juts hard bc i want someone to actually talk to my friends think iam crazy and they hate even talking about it they say it hurts to obad to think something is wrong and my hubbie well he is always out of town everyday and weekend so feeling bad plus some anxiety. duh lol and not being able to find job to keep busy no kids.. i feel useless and stuck sometimes u want to talk to people rather i have it o not you know?. thanks again and thank GOD your hubbie probaly dont have it:) do u know about pls?
  2. sya15
    10-05-2011 01:29 PM - permalink
    sya15
    Thanks for your kind thoughts. It was such a relief to hear that very slim chance ALS. who would have thought I would be happy that it could be PLS. (much better than ALS) I hope you are doing ok. Hang in there hun things will work themselves out. Please don't take some statements made by others too heart. I think they are prob just fustrated because the are living with this terrible disease. And we really can't understand what they are going through. I don't think they intentionally mean to be hurtful. :)
  3. munecagirl22
    10-05-2011 01:53 AM - permalink
    munecagirl22
    i was looking at your new post you made when you and your boyfriend went to the ent and i must say it brought tears too my eye and i know i dont know you i feel like i know you just by following you story and how wonderful how absolutly wonderful wonderful news your ent must be smart bc it would seem he would have somthing else show up by now and i hope and pray that the new lease on life continues... i have read a lot on pls (only on this site) and people live 20 or 25 yrs and by that time IFFFFF it is pls there would be a new med out or some sort of therap a cure maybe??.. not sure about that one tho but a modifing diease drug like in ms is great!! i dont think i quite understand pls that well my understaning is its bad but most dont end up like als'ers if it was to never turn into maybe its not even pls.i just cant express how much gratitude and happiness i feel for u and both ur boyfriend

    you all are so young and love each other and ur a great advocate:)..wonderful you are.
  4. munecagirl22
    09-16-2011 06:49 PM - permalink
    munecagirl22
    iam trying to stay positve and active as i feel its hard because well iam stressed and dont feel good on top so what a mixture... iam young. 26 is young. espically for all of theses things happening. i hope i have many many yrs ahead... hope everyone is right..
  5. sya15
    09-15-2011 11:20 PM - permalink
    sya15
    Keep staying positive and strong!!!! Live your life and try not to focus on whats going on. You are sooo young, many years ahead of you!!!
  6. munecagirl22
    09-14-2011 12:17 AM - permalink
    munecagirl22
    sya15
    well i sure wish i could reply and tell you iam doing fine, but iam not, i still have every single issue, i got a muscle biopsy done yesterday, iam sure it will come out fine also... i mean iam certainly haveing these issues, but nothing is showing up yet, iam trying sooo hard not to stress, but i must say iam bc iam so scared, ofcourse. who woulnt be?.. and i have been seeing some other sites alstdi where people have had many of my main symtems, but still got a als diagnosis later on... 4-5 yrs AFTER TWITCHING.. but the twitching isnt and wasnt ever my concern... day by day and the longer i go still keeping strength in my body is a good sign.. offically 6months now.. thanks for asking:)
  7. sya15
    09-13-2011 10:49 PM - permalink
    sya15
    How are you doing?
  8. munecagirl22
    08-28-2011 11:12 PM - permalink
    munecagirl22
    i see your an pt ive been seen by one once they say i had balance issues, but they have gotton worst since then but my strength was ok too them , and it was weird i remeber when i startd to get the pain the the grioinn or hip area, it was due to my balance...
  9. munecagirl22
    08-28-2011 11:11 PM - permalink
    munecagirl22
    iam so confused.. so even if my emg comes back normal i can still have muscle weakness i thught they said clean emg no als or do you mean another type pf muscle weakness not like als?
  10. munecagirl22
    08-22-2011 09:39 PM - permalink
    munecagirl22
    i dont just have twitching, it has accompanied things in the past 6months, like major balance issues, tripping, tremours, and my body dont feel normal, anymore mainly in my quads, and that is where the twicthing is at, amd where he found on emg, but i dont have those resluts back yet. i also ofcourse have the brisk reflexes, and and spacticty ( that thing where ur relaxing and u just jump it can starle u or ur loved one close to u) i never ever in my whole life had that, untill these past 2months, its everynight now thats what scareds.. me

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