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    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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    Frozen
    I don’t know the exact details but PMA seems to be very low doesn’t it. I was told about those figures because those without weakness as the initial symptom often get dismissed as not having ALS when there do seem to be a small number of people who do start with wasting first not after the weakness
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    Frozen
    I suppose it could mean the umbrella of als as an alternative name to mnd rather than the specific als or PMA sub types
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    Fasciculation1
    Yes. I hear you. Whatever I have started with wide spread twitching first, follow by progressive atrophy beginning about six months after the twitching began, but outside on not being able to right heel walk, I don’t have any “clinical weakness”. I do have my worst atrophy in my right calf and not being able to heel walk does indicate weakness.
    Good Day,
    Been reading your posts with interest. My symptoms have been very similar.Ran all similar testing as you and had 3good emgs. Still experiencing twitching and loosing muscle. Wanted to see how you are feeling/developing any answers?
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