clinic

  1. Doglady

    Study of Urate Elevation in ALS -phase II

    I ‘ve been sent information from my clinic on participation in a study using inosine to increase urate levels and see if it’s tolerated and benefits PALS. If I qualify I think I would be willing to participate. Any one with experience or knowledge have any comments???
  2. MarieLaure

    Soon after diagnosis

    On his first clinic day after diagnosis my dad saw a psychologist who asked him to model how he saw himself in a sort of clay or children doth sort of thing. At the time he could still move his hands a bit but not all of his fingers. He was surprised to see that his work made him think of...
  3. K

    Air Hunger When Laying on Left Side

    My PALS is on Trilogy for about 12 hours at night and another 4 during the day. On two occasions, he has had difficulty breathing on his left side at night while on the machine. The first time it took about 30 minutes of sitting up to recover but last night it was longer. Our RT recommended...
  4. K

    FVC at diagnosis and progression rate

    My mom’s FVC was 50% during her initial respiratory evaluation at the ALS Clinic at Mayo. Because of this, she is not a candidate for any clinical trials. She will be receiving a cough assist and trilogy. Does her diminished pulmonary function indicate ALS progression is aggressive? She is...
  5. I

    Changing out G tube

    I have an appointment at UCSF on Friday to change our the feeding tube since it is bleeding little at the stoma. I have not had a single day of a problem with the feeding. They set this at 1:00 and I was to see the neurologist at the ALS clinic right after. Got a call this morning from...
  6. K

    Also...Slow or Fast Progression?

    Karen, I must admit I am wondering the same thing...slow, fast, average? I know today is a gift, we should live each day and day by day, but my wondering has to do with decisions that need to be made. My PALS was diagnosed in January 2018 with symptoms becoming very noticeable in August 2017...
  7. N

    Hello

    Hello everyone, I wanted to introduce myself ... My name is Natascha, I am 41 years old and mother of two children. In 12/2000 ALS was diagnosed. Since the course at I am very slow, I am the second opinion in 04/2018 in another ALS special clinic. Unfortunately, the ALS was also confirmed there...
  8. T

    Clinic Visit Tom...feeling nervous.

    Tomorrow we are headed to our 2nd clinic visit -- I am sad and on edge today. Is it because we are facing clinical tomorrow? It's so hard to try and have a "normal" day . We have been living with this dx for almost 2 mos. I think the shock is finally gone - perhaps reality is just setting in...
  9. M

    Likely Not ALS - that's good news!

    2 prior EMGs (Nov & Dec) with neurologist #1 noted chronic denervation, resulting in a "Possible ALS" diagnosis. First EMG (Aug) did not show any issues. Dr #1 was clear that lack of muscle weakness/atrophy after 9 mos of continuous fasciculations and cramping was encouraging. Next EMG in 3...
  10. D

    Baclofen - should I expect any issues?

    Clinic had me start Baclofen today for leg numbness and stiffness. What do I need to watch for? Have you experienced improvement with this drug?
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