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  1. BLPhill


    I am part of the group who was on here in 2008. I’ve had motor neuron disease for over 13 years now. Betty
  2. BLPhill

    Have you started Radicava? Use this thread to discuss experiences with receiving radi

    I have completed two rounds of infusions with no side effects. I had a port put in during my first round of infusions. I dont plan to stop the radicava at all, ever. One will never know if it really slows progression rate if you stop. Betty
  3. BLPhill

    MDA verses ALSA Clinic

    Seattle MDA is terrible! They come in exam room after dr has left and ask if u need any equipment then say they will call and never do. This happens every three month when I go in. Ive told my neuro to save me the frustration and keep them out of my room. I deal with alsa only. I doesn't...
  4. BLPhill

    tmasters Passed Away

    I joined the forum about the same time tom did. All of us who joined in 2008 are m just about gone now. Im so very sorry about your dads passing. Betty
  5. BLPhill

    Other's Progressions?

    You have to have the baclofen pump trial before medtronic would agree to put one in, this is how they tell wether or not the pump would help you or not, its a requirement. No DR or neurologist can say yay or nay to any motor neuron disease by looking at a mri.
  6. BLPhill

    Pain at the end?

    I agree with hjlindley, even though I take 100 mg a day of baclofen its the tizanidine that will help the charley horses in your father. I get them all the time and its only the tizanidine that helps. Ask his dr to write script for zanaflex, that's generic name is tizinadine. I'm quite sure this...
  7. BLPhill

    UMN Dominate ALS and PLS

    ,hi Mike I have been chasing the same question for 7 years and as of yet I have no answer. You will beat your head against the wall out of frustration.there is no answer to that question. I seen two als specialists one says upper motor neuron predominate als and the other says plas. One said...
  8. BLPhill


    I take 100 MG a day of baclofen. I have severe spasticity. But my spasticity changes from day to day. Weather in both extremes seems to make it much worse. If I don't take it my spasticity really kicks into high gear. Baclofen among other things have been very helpful to me. I don't ever...
  9. BLPhill

    Worried about EMG

    I have had 3 emg/ncv so far, I wouldn't worry about pain of it. It's uncomfortable but not to bad. Welcome to the forum ladyannabel. I to wish you a non als outcome.
  10. BLPhill

    What do you think caused your ALS?

    I think it's the "PERFECT STORM" of a number different things coming together.