meds

  1. Kristina1

    mexiletine side effects please advise

    Hi I was hoping others who are on or have tried mexiletine could chime in with their experience. Apologies in advance for the length of this post. Background: I'm in the AMX0035 (amylyx) clinical trial in the open label phase meaning we know for sure I am receiving the real drug. I was told...
  2. L

    Als fears

    Hello everyone. I'm new on here have alot of fears and anxiety about ALS. I have not been diagnosed. I've had four opinions from 4 different doctors that say I do not have that. I do have an EMG schedule in 3 weeks. I've been having a lot of pain in my legs feet arms. I would say minimal...
  3. Lkaibel

    Brian Flies Free

    I woke at 3:00 AM to give Brian his meds to find that he had passed on. I am happy for him that he is free of the body that had become his prison. It was a relief to be able to call hospice and not even have to have them come out. The University of Minnesota Bequest Program was here by 4:30 AM...
  4. S

    New caregiver

    So sad. Husband diagnosed end of December. He's very used to being in charge and making all the decisions. I am a RN/NP. So I know a bit about caregiving. He fights me on all the ways to do things. Slowly he is beginning to listen to me but it's frustrating. I only seem to cry when...
  5. B

    Worried About Symptoms

    Hello! Thank you for allowing me to post this on this forum. I really appreciate any insight! About a year ago, I was diagnosed with a gluten sensitivity, hiatal hernia, and too much stomach acid. I was placed on a medication and a gluten-free diet. After a few weeks, I noticed some twitching...
  6. D

    Delsym?

    My understanding of Neudexta is that the dextromethorphan is what helps PBA. If dextromethorphan is the active ingredient in Neudexta, and quinidine is only there to slow the metabolism of the DM, shouldn't any sustained release form of DM be helpful? Quinidine interacts with other meds that can...
  7. J

    How are you?

    How I hate that question now. It's become almost a default greeting. I know most people are trying to be kind by asking, but I honestly don't know how to answer anymore. I usually just say "We're OK" or "We're hanging in there". But honestly, we're not OK. And I'm sometimes just hanging...
  8. P

    My Experience with Twitching

    Mid 30's male, grandmother diagnosed at 73. Began twitching in arm in early December, went away for a few weeks, came back in late December in left calf and r. arm, and felt like it was spreading each week: right calf, thighs, neck etc.. I twitch somewhere in my body every few seconds, for...
  9. S

    We are stuck and need advice

    I have had 2 accidents now and I just dont understand how it's not ALS related. Both now I have been in the bathroom on time but as soon as I see the toilet I cant hold it anymore and it all comes out. Is this normal? Plus my hair is so greasy and my hair on my head and eyelashes are getting...
  10. S

    Strange symptoms

    Hi everyone! 32 year old female here. 5 months ago I started having really tight muscles in my arms. Went to pcp was told it’s anxiety. Started meds - no help. 2 months ago I started experiencing body wide twitching. Started magnesium, exercising and stopped caffeine. I get plenty of fluids and...
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