Search results

  1. K

    Bulbar onset

    Yes I agree with Nikki! She told me to do it last year and I procrastinated. My speech was fine then it went downhill quickly I wish I had done it when my speech was still good!
  2. K

    Musings on Pain and Fasciculations

    Thank you Nikki and Lisa. I’ll research it on here. I did buy an inexpensive one at CVS. I was skeptical myself this FM Dr was highly recommended. Figured I would try the clean diet gut health route. That’s a whole other thread and multi questions!
  3. K

    Musings on Pain and Fasciculations

    So I have one more question.. my functional medicine dr. Recommended I use if a Tens unit on my arm muscles to help with pain , strengthen and retain muscle. Has anyone tried this?
  4. K

    Musings on Pain and Fasciculations

    Kevin that makes sense. I’m still walking fine. But noticed occasional knee soreness and now back. fasciculations started in my tongue and left arm . Left arm now has visual atrophy but not noticeable weakness just pain when I lift it over my head. Rubbed some CBD cream on the back last night ...
  5. K

    Musings on Pain and Fasciculations

    Kevin.. sorry my EMG in tongue was abnormal. I wish there was a possibility believe me I triple checked! I have been diagnosed at Miami, Holy cross and MGH with bulbar onset. So far speech has been effected no limbs after 2 years of symptom onset. 9 months since diagnosis. That being said I do...
  6. K

    Musings on Pain and Fasciculations

    Kim, I started having lower back pain a few weeks ago. Trying to figure out if this is ALS related or not. I just assume everything is. Last clinic muscle strength is normal. Last EMG limbs were normal. I do have the pain Kevin mentioned rotator cuff shooting pain when I move left arm in...
  7. K

    tumeric or curcumin

    Hi Lisa I’m taking 1000 mg after Breakfast and 1000 mg after Dinner. I’ll try 3 times a day lower dosage this week Thank you
  8. K

    tumeric or curcumin

    What could I add to my supplements to help with GI issues from Tudca? I’m currently on Riluzole, Theracurmin, l Serine and Vitamin D , B 12 shots. Every time increase to 750 mg from 500 mg 2x (with food) I get diarrhea and nausea. I have increased slowly over a 2 week period. Then I stop...
  9. K

    Amylyx filing in Canada

    I buy my Tudca on Amazon and was fortunate to have a prescription for Sodium Phenybutyrate approved by my insurance Both mine are capsules and should be taken together. These are both the components in AMX35. I asked my Dr if I had an issue with the SP was it beneficial to take the Tudca alone...
  10. K

    sodium phenylbutyrate

    Rea Have you had any side effects from it? I have been on it for 12 days and my face broke out in cysts ( similar to large pimples) I stopped it for 4 days and they went away. Just wondered if anyone else experienced this Kelly
Top