F
Reaction score
7

Profile posts Latest activity Postings About

  • F1 justo checking on you and ent appt. You can hit me back on email.
    F
    Fasciculation1
    but it’s just continued to worsen since then. I had some minor atrophy at the starts, but it became really progressive about six months in. Despite not being able to rt heel walk, I still test 5/5 strength wise in all muscle when the neuro does manual muscle testing and that 20 months in. I have a ton of perceived weakness though. I shouldn’t even say perceived. I have weakness. Going up
    F
    Fasciculation1
    and down stairs, getting out of a car etc. My strength has undoubtedly changed for the worse since this all started. IMO, a five year old could likely pass the strength tests at the neuro office.
    BenO
    BenO
    True....I honestly feel like they dont take me seriously ...... Do you have any neck extensor problems at all? What do they say about your atrophy?
    Very grateful for the info. I started with twitching in my deltoid followed by pain then weakness in that shoulder only noticeable when I lift anything above my head. Neuro diagnosed brachial plexitis after MRI's and EMG's, said the partial loss of use of my shoulder will hopefully return with time. Constant twitching now makes me think that it is ALS when it could be a serious case BFS brought due to severe anxiety.
    Hi, I commented on one of your posts a while back. I havnt been on since so didn’t have a chance to reply sorry. I’m 27, female. Have confirmed atrophy on left side, however I have noticed right side. I had first MRI Friday 21st Feb; brain + neck and EMG booked 9th Mar
    P
    Psychstudent92
    yeah that’s very true, it is all looking positive at the moment so trying to keep the chin up. Its just so frustrating not having a reason for my symptoms too as I’m sure you know yourself by the sounds of it.
    P
    Psychstudent92
    Yeah I think one is enough for me. Hoping it’s my last one. Sorry to hear your next EMG was cancelled, it’s such a bad time to be experiencing any health problems. I’m sure you were anxious to see was there any further progression. I hope the appointment went well today though?
    P
    Psychstudent92
    Thank you for saying that! Same goes to you hope you start getting some answers soon. Have they giving any suggestions to what it could be for you? Luck of the Irish 😂 you must be joking if it wasn’t for bad luck I’d have none
    Not really sure how to navigate this site but pm me.
    F
    Fasciculation1
    Unfortunately, we don’t have the ability on here to PM. We can only communicate like this on profile posts I believe.
    F
    Fasciculation1
    I’ve been keeping up with your posts. I’m really sorry about what you’re going through. I have many similar problems with most of them being lower motor neuron dominant. I go for my fifth EMG in a week and a half to see if it shows further denervation issues.
    Hey man I saw you are having swallowing issues as well. For me it's with liquid. Like water feels as if some, not all of it goes up behind my nose. It's not like it drips out but just sits there. Then it feels like it stays there and bothers me.
    F
    Fasciculation1
    Liquids for me feel like they bubble back up. I know I don’t have acid reflux, so, I hypothesize my swallow muscles are just weak and itscnot pushing things down the pipe like it should.
    Yo man been following you and Arran, finally made an account how are you doing? I've had atrophy for 3 months now and fasciculations for 1. No weakness. Neuro thinks im insane
    F
    Fasciculation1
    No. I deleted most of my social network accts last year.
    F
    Fasciculation1
    I have email, but they won’t let us exchange contact info on this forum. I tried before and my post was deleted and I was warned by the moderator not to do it.
    A
    AlwaysLivingSca
    From what I’ve seen neurologists don’t know a lot and it’s all an educated guess, the criteria to diagnose is one limb not working and another limb affected , til something totally isn’t working I’m just going to wait and see
    Something treatable would be so good mate, those letters ALS/MND I hope we never have to hear them, also! I know we aren’t allowed to give out our deatails, but I’m very easy to find on FB with my unique spelling so feel free to find me! For a little more privacy
    • Like
    Reactions: Blacksheep62
    A
    Arran
    Actually without my surname it might be hard lol
    A
    Arran
    It’s Mortimer
    L
    legato99
    I pay a lot of attention to research and it seems that they have created Leydig cells (the ones that produce testosterone) in a lab and that one day they will try injecting it in humans. That would solve the low t problem. But it's probably a few years away
    Hey mate, I thought I sent a msg earlier today, but I can’t find it, anyway how are things with you? And appointments coming up etc! My left pinky finger is in a constant twitch now
    A
    AlwaysLivingSca
    As far as we know she’s the only one , she didn’t test positive for any of the known genetic genes but there majority of them are undiscovered anyway.plus the genetics have seemed to come out of no where in families no one has it then it starts with someone and goes from there , I hope not , but these symptoms , I never thought I would until this whole thing started
    F
    Fasciculation1
    Hey man. How’s it going and how you feeling?
    A
    AlwaysLivingSca
    So over this .... lol, I’m alive everyday is a gift , but it’s not going away that’s fursure
    Hey bro,
    I've been reading your conversations with Arran and I'm sorry about what you guys are going through. It really sucks. I have started to experience symptoms and I sadly believe it's MND for me. I get the twitches in my tongue as well. Do you guys twitch in the tongue? Arran please answer if you read this too.
    Hey mate thought I start a new convo, how are things going with you? Any news?
    F
    franklyhonest
    I got an EMG a month ago (3 months into my symptoms) in the states that came back clean. That neurologist said he did notice some atrophy on my legs and arms.

    Went to cardiologists, vascular surgeons, and a rheumatologist beforehand and everything came back clean.

    I just went to an ALS specialist here in Israel. She said that it's all in my head. Crazy frustrating.
    F
    franklyhonest
    Are you in Australia, Arran? I heard your health care is great over there.
    A
    Arran
    Yeah I am in Australia, I can’t really compare it to anywhere else! But from what I here else where it is a lot batter! I still think Canada is better!
    I guess i can post on here, been reading your comments and convos. Would like to join in on this journey with all of you, im 21 M. Started twitching bodywide 6 months ago, clean clinicals but no emgs yet. My neuro (NP) is a clown and basically said i could have als without doing any actual tests so i stopped going to her. I dont seem to hve any atrophy or weakness but who knows at this point.
  • Loading…
  • Loading…
  • Loading…
Top