Recent content by notme

  1. notme

    Hey Sweetie, I'm sorry--I haven't been on much at all. Some things that were said made me...

    Hey Sweetie, I'm sorry--I haven't been on much at all. Some things that were said made me decide I shouldn't be here, so have stayed away. I found a message from someone on my writing page on FB telling me to come find you~ I'm so sorry! I didn't mean to worry anyone. HOw are you? I'll...
  2. notme

    Hey--til David makes your BFS post a sticky--why don't you add it to the sticky thread he made...

    Hey--til David makes your BFS post a sticky--why don't you add it to the sticky thread he made of my post in the meantime (before it gets locked) Don't know how mine made the stickys when yours didn't. Have a great Easter!
  3. notme

    freaking out?

    You have it backwards. The twitches come AFTER the weakness in most with ALS, not the other way around--and also AFTER weakness in other causes of non-benign twitches.
  4. notme

    Any possible way this is not ALS?

    Bluedog, Against my better judgement--your pulmonary function is basically NORMAL to above normal. That 83% MIP isn't that low. 80% to 100% of predicted is NORMAL. Want mine? I'll send the O2 tank and the bipap while I'm at it... Your lower than you'd like MIP could have to do with your...
  5. notme

    update and advice needed!

    HI Trent Here's why your doctor wasn't very alarmed. Denervation can happen when there is something pinched somewhere. It's a pattern of denervation AND renervation that is seen in those with ALS. Has an MRI been done to rule out a pinched nerve somewhere? Further studies should be done if...
  6. notme

    Question about twitching and progression

    HI This sounds familiar to me for some reason. What you describe almost sounds like you've got a pinched nerve somewhere---and that can happen anywhere from the c-spine down the hand. Lots of areas for them to become trapped. The neck, shoulder elbow and wrist are the most common areas. What...
  7. notme

    Time to Ask the PLS crowd again

    I'd never abandon my friends--even when I wasn't posting--I was PMing. I've made some really good friends here. I shouldn't let things get to me. Sometimes, I do :) I'll never please everyone. Such is life. Happy Easter, everyone!
  8. notme

    Time to Ask the PLS crowd again

    You all are right. To heck with it. I'll still be answering posts if I think what I have to say may help someone.
  9. notme

    Not sure if it is ALS but like most pretty scared

    Hey HG I know you're likely very worried right now. Please keep in mind that severe lumbar issues can be bad enough to cause EMG changes similar to what may be seen in ALS early on. It can also cause foot drop if the right spinal nerves are involved. I'd take comfort that at this point, it...
  10. notme

    I'm scared and my doc is confused

    Hi At this point, what tests have been done or scheduled? Clonus isn't normal...but it does NOT mean you have ALS. Spinal stenosis can cause much of what you describe in your first post. Have cervical and spine MRIs been done? With your symptoms, I'd be freaking out a little, too, and...
  11. notme

    freaking out?

    Getting folks to understand that most commonly, those with ALS (and other causes of nerve-muscle death) have fasciculations. These are often minute and not even noticed by those affected with them until long after weakness is observed. When one has body wide twitches...those are not like the...
  12. notme

    Hi, question about symptoms..

    well you'll be glad to know that ALS just doesn't move that fast.
  13. notme

    Left Side Weakness

    Hon...there are no blood tests for strokes, per se. And MRI's unless done recently since the onset of the weakness, would not show a stroke. Or a mini-stroke, for that matter. But as said--ALS just isn't that fast.
  14. notme

    Stages and End of life

    For some with ALS, swallowing is one of the first signs. It doesn't mean at all that she's 'near the end'. If shes considering using a PEG--now might be the time to consider having one put in. PALS also do quite well for an undermined length of time with a bi-pap for help with breathing--for...
  15. notme

    How long before a wheelchair?

    Richard, Contact your ALS society there and get a PWC loaner (or the MDA) to use while you're in the being "fitted" process...and remember things like elevation and such that you're going to want 'later' if not now. The Pals will chime in with specific ideas of what kind you may be best...