1. F

    travel health insurance Canada to the USA

    Hi there: My friend has been denied travel health insurance for a visit to the USA from Canada. London Drugs -recommended by the ALS society denied her. She is using a walker and CPAP assist. Does anyone know of an insurer I can approach? thanks
  2. A

    PLS Dominant ALS

    In September 2016 I had issues the 1st week speaking so my primary VA Doctor prescribed a week long medication for laryngitis and after taking it, nothing changed. By the end of the 1st week of October 2016 I was unable to speak, yet ENT Doctors at VA said my voice box was okay from test and...
  3. SyncOrSwym

    Confused: Hospice vs. Noninvasive Ventilation?

    Color me confused.:?: I finally got together with the VA last week for a whirlwind of meetings. One result was to be scheduled next week for a breathing test in Seattle. A second result was a phone message from someone at VA for me to come in for a fitting for CPAP(?). A third result was...
  4. ShiftKicker

    Pressure sores on ear

    Hi all- Due to a weak neck and trouble turning over in bed, I have developed a pressure sore on my ear (fancy term: Chondrodermatitis Nodularis Anti-Helicis). While not as worrisome as the skin cancer my doctor originally thought it may be, it's a MAJOR pain in the a**. I don't sleep on my...
  5. NotALS!

    Misdiagnosed 4 times

    Hi. I want to share my ALS journey with others to let them know that it is possible to be misdiagnosed with ALS. Since my story spans 8 years, I will try to give a brief synopsis of what cured (yes, I said CURED) me. It started in 2009 when I lost strength in my left hand. It quickly spread to...
  6. B

    Breathing Test Results

    - My wife is scheduled to be seen @ an ALS Clinic, for a second opinion 3 day workup, but the appointment is over a month away. The doctors are undecided if she has ALS or PLS - Her not very involved local neurologist scheduled a pulmonology test for her (2 months ago), and she finally had...
  7. Jackfishem

    Respiratory - bipap

    Mom dx with FTD-PPA in 2014, restrictive lung disease and ALS in 2015, and COPD in 2016. We switched out her cpap for a bipap in January. Mom only uses the bipap to sleep. It's normal for her to get out of breath with the slightest bit of activity, but today I noticed something concerning. When...
  8. Janis J

    greetings from long-time lurker

    Hi, I've finally joined after lurking for a few months to get lots of useful information and inspiration. My husband Douglas was diagnosed with ALS in May 2015. His arms and hands were affected first and are now mostly useless. He's now having trouble swallowing and talking and had a PEG tube...
  9. Jackfishem

    Appt with Pulmonologist

    I have been waiting for weeks to get mom in to see a local pulmonologist. I spoke with his scheduler today and she says, "Can y'all come in tomorrow at 1:30?" Duh, of course we can! Now I'm freaking out because I have no clue what kind of questions to ask. I gave the scheduler mom's history...
  10. N

    ARrgggg, what to do? (Tirasemtiv or NP001)

    OK, I go on Tuesday 12/1 for my initial screening for the Tirasemtiv Phase III trial but I check my email today and received this for the NP001 Phase II at Cutter. <snip> Dear Brad, Thanks for your interest in the NP001 study and your patience as we get the study organized. I am very...