Forum Replies Created

  • sherri-morehouse

    Member
    February 13, 2024 at 2:42 pm in reply to: Recently diagnosed

    Hi Fran91,

    Welcome. You are so right that a positive attitude is so important to your wellness. I do agree on your point to accept the diagnosis, but I would challenge you to NOT accept the prognosis. Neurologists steered my husband (who is a pALS) away from searching for the cause of the ALS, but I couldn’t accept that we do nothing but take the few approved drugs the get a few extra months. After more networking on forums like this and additional testing, my husband was found to be positive with Lyme disease, Bartonella, and mycotoxins. We are actively treating these issues now and he is thankfully stable.

    I hope you are able to find a way to at least stabilize your progression, but for sure your best tool is your own mind and body. I’d encourage you to watch the movie “HEAL” if you can find it. It has amazing stories of people tapping into their own power to heal from trauma and disease.

  • sherri-morehouse

    Member
    July 21, 2022 at 4:25 pm in reply to: Use of Off label treatments.

    Not seeing this information posted yet in this thread, so thought I’d share.  For those of you who want to try “AMX-0035” (homemade), TUDCA is straight forward to source (although not the pharmaceutical grade used in the Amylx clinical studies), but the Sodium Phenyl Butyrate is not.  We were unable to get our insurance to cover it, and luckily heard of a distributor in Lithuania where cost is reasonable ($580/40 day supply), and no prescription is required.  They are called CanChema where we’ve analyzed the compound against one obtained via a US prescription with a perfect match.   Many other PALS have also verified.  Discount code “pba20off” gets you down to the $580 for a 250g purchase.  My husband has been using this with TUDCA for 10 months along with many other things.  He’s not progressed much at all, just slight slurring.

  • sherri-morehouse

    Member
    April 28, 2022 at 3:56 pm in reply to: 1st EMG

    Hi Andy,  I wanted to share that our ALS Clinic neurologist did not arrive at a definite ALS diagnosis after the EMG. She actually performed the second one my husband had.  EMG #1 was a local neurologist who said the results could not eliminate a neural muscular disease.  He then recommended we see an ALS specialized neurologist.  Her comment after she performed an EMG was that the results suggested ALS was a possible diagnosis and then she ordered up 4 MRI’s, and a bunch of blood work.  After this, she gave the ALS diagnosis.  Then we did a repeat of everything at the Mayo Clinic for a second opinion (EMG #3) where they too arrived at a 90% likelihood of ALS.

     

    My point:  you may not get a final diagnosis after your first EMG.  More testing may be required before they do it. Definitely you should go to an ALS clinic if you are not already engaged.  And I would recommend a second opinion as it is not a straight forward diagnosis to make, and some miss identifying a mimic’er.  I’d confirm your blood work includes a test for Lyme Dieases and heavy metals if your neurologist has not yet recommended this.