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Mike12345

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  • TippiLeigh
    Hey Mike, just saw your update from earlier today. So sorry to hear about your diagnosis. I know it can be depressing seeing people’s fast progression here, but there are also a lot of people that have done well. I like to see what they’ve done to slow progression. I’ve also found some good facebook groups that are very supportive and have lots of good info and have lots of positivity. Maybe try there too.
    View previous comments…
    Bestfriends14
    Bestfriends14
    As my last post said, which was not deamening,
    Please, do share your diagnosis. Did he/she prescribe riluzole? Would you mind posting the EMG conclusion/summary potion that says the diagnosis? What was the discussion? What are next steps after the muscle biopsy and when is it scheduled for?
    Bestfriends14
    Bestfriends14
    Cont. from last post.
    If you have been diagnosed, a diagnostic summary from your biopsy would be helpful for others who post on here. The ALS community typically aids others that have been diagnosed, or in the diagnostic process, as a courtesy due to the rarity of the disease and lack of information that is out there.
    Thanks
    TippiLeigh
    TippiLeigh
    Mike, I’m sorry you were dismissed here. So was I, as were a lot of other people that also came back confirmed with MND. It’s very hurtful, especially when you’re trying to fight a terrible disease. People’s emotions run high and aren’t always the most helpful. I’ve always thought just being kind, supportive & listening is the best approach to truly helping people. Otherwise it causes hostility.
    A
    Hello. I have very similar situation just in a shorter time frame. How are you doing now? Noticed slight weakness/paresthesia on right side when working out on mid June, then full body twitching mid July. Now I can see all my calf, thigh, chest, hand muscles have atrophied, and legs and arms feel heavy when moving and hands feels weak with much less dexterity.
    View previous comments…
    M
    Mike12345
    Yeah, symptoms are strong. But relying ONLY on emg. I don't know if I have 100 percent faith in them.
    A
    Androidlll
    Exactly, it feels like they just downplayed all my clinical presentation when the EMG came out (before they were worried about my atrophies).I tried to show them how my tongue is getting smaller from the edge (I beatbox so I know how a normal tongue should feel like), but all they asked is to stick my tongue out and said my tongue doesn't meet the definition of tongue atrophy. I am just without words.
    A
    Androidlll
    Hey Mike. Are you doing better? Hope you found out what has been going on.
    W
    Similar situation. Started with hand twitching (not widespread) now 24/7. First dx BFS despite chronic denervation in all twitching muscles. Confirmed atrophy followed by weakness in the hand. Second DX of ulnar nerve irritation. If you had more than one EMG how apart in time were these? Was chronic denervation always in same muscles or were they finding it in previously normal ones?
    View previous comments…
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    WorriedMuch
    Ok, so with the hands we seem to have something similar. I also have no symptoms of neuropathy, just a slightly lowed motor NCS and the same needle EMG as you. And it looks like the docs interpreted it the same way with cubital. But in your case it doesn't explain the rest. It's weird your EMG was not a firework all over. I hope you find out what's going on and it's not as bad as you expect.
    W
    WorriedMuch
    Weird thing I am having atrophy+twitching in a median muscle but it's clean on EMG. Did they offer you any alt. diagnosis besides neuropathy? I am scared that I am heading in the same direction as you with symptoms. Your thread is active, do you think you'd ask the mods if there've been any ALS dx on these forums with chronic denervation + altered MUPs only as the first EMG abnormality? If none that's a good sign.
    M
    Mike12345
    They say I've got cramp fasiculations syndrome as well. But again that doesn't explain my symptoms.
    I did post my EMG report to my thread a while back and they all said that at the time it didn't show a typical ALS pattern
    Which it doesn't. It was till very abnormal without any real explantation.
    Mitrico
    Hello Mike, also like you for 15 months I have a reduction in muscle tone throughout the body .. 4 emg and many visits and exams all negative .. think bfs .. I still can do everything but this thing worries me .. have you discovered anything? excuse my English
    M
    Mike12345
    English is perfect.

    I can't do a calf raise on my left leg, and hands are loosing a bit of dexterity, but beyond that I am still pretty able.

    Still waiting for some more tests , but have to wait longer due to the Corona virus.

    I'll update of anymore news or I find something else out .
    • Like
    Reactions: Vivz
    A
    Hey mike, fasciculation1 mentioned you to me, so I just quickly read your story! Sorry you’re part of the club now!

    It sounds like you have had fairly fast atrophy over the last 2 months? Where in Australia are you? I’m in Melbourne, so I know who’s worth seeing here
    View previous comments…
    F
    Fasciculation1
    I love that comment from the doc. So, if I have twitching and atrophy that conveniently began at the same time, tell me what it is then, if it’s not a motor neuron disease. Most neuros I’ve found are just complete idiots.
    F
    Fasciculation1
    When I saw the neurosurgeon last year about my severely atrophied calf muscle. He said, you wouldn’t be twitching all over if this was a back issues. He said if it was a back issue causing this, you’d only be twitching in your calf. He straight up said, “this sounds like a motor neuron issue to me”. Then the neuro, when I told her that, said, “let’s not get ahead of ourselves”. Lol.
    V
    Vivz
    How are you doing now Mike?
    F
    Hi Mike, I’m really sorry for what you’re going through. I’m almost in the same boat as you. Wide spread twitching and atrophy, with atrophy being mostly on my right side, from head to toe. This has been going on for 19 mos and I still don’t have answers. I’ve had several EMGs, with the two most recent showing a few areas of denervation, but not what’s usually
    View previous comments…
    F
    Fasciculation1
    Here in the states, it’s pretty easy to get. They have these pellets here, where you make a small incision in the hip and in goes the pellet. It’s good for six months and slowLy melts into the system, that way you’re not having to constant inject the stuff. I hear cremes and gels don’t work well.
    M
    Mike12345
    Yeah interesting.

    I'm 32 and I was at 332 recently, previously have been as low as 160 though.

    Whether it will help me or not is another story though hey
    M
    Mike12345
    Actually, disregard that. We have different measurements in aus. But mine was said to be low on any case.
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