1. I

    Drugs and PT for PBP?

    I was diagnosed with PBP a year ago this week. I frequently check in and read most of the posts for the day. It just dawned on my husband and I that none of the four neurologists I have seen have mentioned physical therapy or drugs that might delay the progression of this beast. Until about...
  2. I

    Botox injections

    I have been having a very hard time with saliva. It has really gotten worse in the past 3 months. My neurologist at the ALS Clinic has given me two medications. One is a capsul and the other is drops under my tongue. They help, but very minimally. Her suggestion is to get Botox injections...
  3. lgelb

    FDA approves Xeomin for drooling

    It's similar to Botox but may have some safety advantages, and is the only agent with this indication, so that may make reimbursement easier to obtain.
  4. M

    Does this sound like possible ALS?

    Hello all, I am new to this forum and I will be honest that I’m feeling quite anxious. I’ve been experiencing some symptoms that I’m worried may indicate ALS. I will preface this by saying I’m 24 years old and I’ve had neurological problems since I was 12, so I am no stranger to seeing a...
  5. S

    Genuinely Concerned

    Hello! So my concern started about two months ago when I was 5 minutes in exercise and suddenly my arms became heavy to the point it was hard for me to even pick up my water .(and yes I ate well that day and was hydrated). This has happened before and I had ignored it, but this time I felt like...
  6. T


    About a month and a half ago or so, my energy level just plummeted off a cliff. It's a struggle to do anything. I get really tired going up stairs. I get tired walking. I get tired feeding. I usually don't really get out of bed until noon. I manage to get a couple feedings in before that, but I...
  7. M

    Salivary Glands Botox Shot

    I am Bulbar Onset ALS and I decided to get the Botox shots in my salivary glands to help with the constant drooling. 2 days later, I could not swallow at all. I called my ALS doc and they set me up for an emergency feeding tube. 2 days after that I was in the hospital with pneumonia. Finally...
  8. S

    Botox for Bulbar Symptoms

    Has anyone had botox injections to help with excess saliva? If so, what were your results?
  9. A

    Ranting Thanks or Thankfully Ranting

    M has progressed significantly in the last year. He has given up walking and currently is using his Zinger (our traveling electric wheelchair) in the house. We have an appointment at Spaulding for him to be fitted for a power chair. I have appreciated the recent threads regarding the PWC...
  10. F

    Sorry for the long post, but legitimately concerned.

    29/m, 6'1, 200 pounds. I've had atrophy in my right shoulder for a year and a half now. Prior to that I've had scolosis (diagnosed around 18 years old) I've had a cervical spine MRI (just showed a very straitened cervical spine), brain MRI (chiari malformation which several dr's said is...