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  • 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.
    Did you ever do a muscle biopsy?
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    Fasciculation1
    However, distraction techniques can sometimes be helpful. I just found a new series on Netflix I’ve started to binge to try to get my mind off all this. Sometimes it works, sometimes it doesn’t.
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    ivonne615512
    i totally agree i twitch all day long, however i try to stay positive since i still dont have a diagnosis yet being hopefull it turns out to be something else, keep safe:)
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    ivonne615512
    ii do that too, and try too spend as much time with friends and loved ones i feel that helps:)
    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
    • Like
    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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    Arran
    But the rate things seem to be going atm! I’ll probably have muscle failure anyway, so it will be obvious
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    Arran
    At least it should be obvious 🙄
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    Arran
    I really hope this lady gets to the bottom of your problems! She sounds Indian, so hopefully she has been a doctor over there for a while! Because she should have seen lots of mnd! 1 billion people!
    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.
    62
    Hope you are well. Been trying to stay off the site...keep the BP down :). I’ve seen on posts that people have traded email without it getting deleted. I tried to send u mine and apparently it did. I had the same with thyroid nodules and it turned out to be nothing. I understand about wanting answers
    Hi Fasciculation1, it sounds like we're both in the Bay Area. I have not been to Stanford but have been to UCSF and a bunch of neuros at Kaiser. Have you tried Trazodone for sleep, supposedly neuroprotective....well, in mice, at least. :-/
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    stuffyearsago
    Sorry, I meant autonomic testing. I think part of my problem is autonomic storms with the crazy BP and HR spikes and bouncing and also the breathing that seems to worsen when I fall asleep and into autonomic breathing mode. Also, very sweaty feet - so sweaty all the skin peeled off of them. Then some episodes of feeling hot and cold.
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    Fasciculation1
    Ah, I see. Ok, makes sense with autonomic. I’m sorry you’re having to outside outside of Kaiser to figure it all out, as I know it’s all so costly.
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    Fasciculation1
    Hi. Any news or progress?
    Hey mate,

    I’ve been reading your story, and I’m in a very similar position to you, although you have managed to explain yourself much better than me! I’d be very interested in hearing from you as I’m sure you know how isolating this situation make us feel! The doctors think we are mad and family and friends try to understand it but really have no concept of the severity of it all

    Hope to hear from you soon 👍🏻
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    AlwaysLivingSca
    What did they say the reason was ? I got a parsonage turner diagnosis last week , but idk if I fully believe it
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    Fasciculation1
    They gave no explanation. I’ve had four different practitioners do the five EMGs. I’m headed to Beverly Hills in a week and a half for number six. My last neuro appt said she thinks I have MMN and wants me to trial Ivig, but I don’t believe I have MMN, so I’m getting a second opinion. I’m fairly confident I have als/PMA. They say here an EMG can’t be done too early, but with my progression
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    Fasciculation1
    from EMG 1-5, I’m apprehensive about the statement they can’t be done too early. My Tibialis anterior is almost dead and two lumbar mris don’t show any cause for it.
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