Recent content by Kristina1

  1. Kristina1

    Diagnosis discussion. Moved from CIHALS thread

    Remember that "probable ALS" doesn't mean that you "probably" have ALS. It means that you straight up HAVE ALS, and that "probable" is the classification for number of regions of the body that your ALS falls into at this time. Many PALS die before ever reaching "definite" ALS. It's a bizarre and...
  2. Kristina1

    Nurown update

    Thanks Laurie, this is why I prefer these forums to most FB groups. Fact checking.
  3. Kristina1

    please help

    Laurie, you offered some really great feedback that I will talk to my neuro about at clinic in 2 weeks. But I wanted to address this. I have bladder spasticity. For me that means I get two opposing symptoms: Sometimes I have urge incontinence. BUT other times I feel the need to pee, sometimes...
  4. Kristina1

    please help

    why don't you email me: [email protected] it's my blog email address not my personal one so i feel comfortable posting it publically
  5. Kristina1

    please help

    Thank you all. My son had somewhat-emergent surgery this morning so I only just got home. My son is doing great! We tweaked with meds and I did have less pain last night, more on par with my normal, which still sucks but isnt a scary emergency.
  6. Kristina1

    please help

    med list: riluzole nuedexta oxybutynin (am only) baclofen 10mg/3x day, 20mg nightly lyrica 150mg 3x day fluoxetine liquid daily oxycodone 9 mg ER every AM oxycodone 10mg as needed lorazepam 0.5mg as needed liqid magnesium nightly liquid multivitamin daily amx study drug PB + TUDCA 2x/day
  7. Kristina1

    Are UTIs common with ALS?

    Ask her if she has a hard time innitiating the flow. Trouble 'starting' to often comes with incomplete emptying and urinary reflux. UTIs are common with this. The minute I feel a UTI coming I take 2 capsules of a product called Harmony and UTI is averted. Harmony contains d-mannose and can be...
  8. Kristina1

    please help

    Note: x-posted on FB Lately I have had a lot of painful spasticity at night in my legs. I often wake in pain several times a night from how stiff my legs are. Due to some changes I made, Ive had some minor improvement the last few nights. Then last night I woke in excruciating 10/10 pain. My...
  9. Kristina1

    End of life legislation

    Because I have an Autistic child I was very involved in Deaf (with a capital D) and Autistic (with a capital A) activist circles as an ally. Both vehemently opposed DWD legislation. I was conflicted/undecided about it. Now that I'm living it I can't believe there was ever a question! It's no...
  10. Kristina1

    Does anybody use TUDCA or AMX0035?

    I am in the AMX0035 study, currently receiving the real study drug as part of the open label phase. I have described my experience in the research forum of the site.
  11. Kristina1

    off topic forum area

    Suggestion- could we make posts from the off topic forum area show up in the "What's New" list? I use the what's new list a lot so I don't have to check every single sub-forum, but nothing from the off topic area appears there.
  12. Kristina1

    Trilogy Encouragement and Tips

    I use a Resmed airtouch f20 full face mask. It's the one lined with memory foam.
  13. Kristina1

    Trilogy Encouragement and Tips

    VOCSN is a ventilator like trilogy, only it also has cough assist, suction, and nebulizer all in one. Ventec Life Systems I have no idea why it's not drying my mouth out but Ill take it!
  14. Kristina1

    Trilogy Encouragement and Tips

    I'm going to go against the grain and say I love my full face mask. But I had to try a lot of masks to find what worked for me. I also experimented with chin straps and mouth tape and hated it. When I first started trilogy it felt way too strong to me, and Laurie helped me decrease my tidal...
  15. Kristina1

    Nuedexta vs OTC dextromethorphan

    I have inappropriate laughter much more than the crying. I hate it. It's extremely humiliating. Even my own family took a long time to really believe and understand that I was not feeling any amusement and was simply a prisoner watching in silent horror from inside my head as my body forced me...