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  • F1 justo checking on you and ent appt. You can hit me back on email.
    BenO
    BenO
    Twitching wasnt the worst of my issues at first , it was there and still there body wide. Mine was cramps , bad weakness in posterior neck with atrophy. Also really noticeable percieved weakness in left butt all the way down the back side of my left leg and from my left shoulder all the way down to my left hand. Bouts of exhaustion, exercise intolerance , loss of coordination in both hands, brain fog.
    BenO
    BenO
    These symptoms were all REALLY bad for 30 days when i got my first EMG thats why Im still thinking something else is going on, I just cant see how nothing would show up on testing. OR that the EMG was done wrong or the upper and lower motor neuron scenario IDK. Maybe thats what happened in your situation as well? Have you ruled out muscle disease?
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    Fasciculation1
    Yes, you are totally right that the EMG detects LMN issues and given my extensive atrophy, fasciculations and hyporeflexes, all LMN symptoms, the question are really, do I have something other than als/pma or can the EMG be done too soon. I don’t have any UMN signs, so i know i don’t have PLS. The EMG is supposed to rule out most muscle disease and my CK levels have been normal.
    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.
    BenO
    BenO
    Hows the shoulder?
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    Vince Meeford
    Thanks for asking. Shoulder is improving, getting stronger but the fasciculations are now widespread, both arms, hands, feet, calves, knee. So weird and it scares me. Comes and goes. No atrophy or weakness but always thinking that something more serious is going on. Took videos of the fasciculations. Neurologist believes it's a case of BFS. I sure hope so but the fear of ALS is always there. How are you feeling ?
    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
    BenO
    BenO
    Also didnt see any atrophy. Of course. 🤦🏻‍♂️
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    Fasciculation1
    The fact your reflexes are intact is a good sign. What I’ve found with docs is they usually want 6 mos between EMGs. Yes, the ping pong game is real, but hopefully on a ping or pong, one of the docs can figure out an alternative. I’ve been pinged all over the place to include two rheumatologist, two cardiologists, gastroenterologist, six neurologists, spine surgeon, non surgical
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    Fasciculation1
    spine specialist, then I’ve self referred to a naturopath, integrative physician, ENT, and an infectious disease doc. I’ve literally seen more doctors in the last two years than I have in my prior 40 years of life combined. It can be a grueling process for sure. Have you had your Antinuclear Antibodies tested?
    Not really sure how to navigate this site but pm me.
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    Fasciculation1
    Unfortunately, we don’t have the ability on here to PM. We can only communicate like this on profile posts I believe.
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    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.
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    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
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    Fasciculation1
    No. I deleted most of my social network accts last year.
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    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.
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    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
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    Reactions: Blacksheep62
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    Arran
    Actually without my surname it might be hard lol
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    Arran
    It’s Mortimer
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    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
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    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
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    Fasciculation1
    Hey man. How’s it going and how you feeling?
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    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?
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    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.
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    franklyhonest
    Are you in Australia, Arran? I heard your health care is great over there.
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    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.
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