Thank you all for your concern. (Sorry I tried to post in another forum thread. Now I get it!)
I used the term "supportive alternative care" to describe care which hopefully can make me feel better and support my general health. Needless to say, I do not expect a cure or even a significant slowing of my progression to come from these modalities.
Currently I am using the shotgun approach to alternative care. I am seeing a naturopath, a chiropractor, and an acupuncturist. I am even trying homeopathic remedies, so you can see I am really going down the rabbit hole! I was hoping to hear from others of any success with particular treatments or diets.
Besides the two medications mentioned in my first post, I am about to start AMX0035 using the over the counter TUDCA component and a prescription from a neurologist for sodium phenylbutyrate. Actually I was rather shocked that no other neurologist suggested that course of treatment in the prior 9 months that I have been seeking treatment.
I first saw a local neurologist at Oregon Neurology in Eugene in January 2021. I count my symptoms of muscle weakness in my legs and loss of balance as beginning in August 2020. He acknowledged that I might have a NMD but suggested I get cervical spine surgery to deal with a cervical spondylitic myelopathy that he thought might be causing my symptoms. I then saw a neurologist at OHSU in Portland and he was adamant that spine surgery was not a good idea for me. I did not get the surgery.
In a subsequent visit five months later in May 2021, the OHSU doctor performed my second EMG and came back with a diagnosis of suspected ALS.
Last month, August 2021, I went to the neurology center at Swedish Hospital in Seattle. After a physical exam, a review of my many prior lab tests, MRI's, and EMG tests, I don't think I got an official diagnosis of ALS, but I did get an appointment with their ALS Clinic. Unfortunately they are booked out until January so it will be a long wait.
Then just this month, September, in order to check out clinical trials available through the Healey Platform, I saw a neurologist at Providence Hospital in Portland. She told me about the availability of the AMX0035 treatment... if I was willing to pay for the off-label usage myself. She also suggested I do genetic testing to see if I had a genetic component, which must be the one test I did not have yet. That test is now scheduled. She also enrolled me in their ALS Clinic for early November, two months earlier than Swedish was able to do.
I wonder, when does a suspected diagnosis become an official diagnosis? The first doctor nine months ago labelled it as "suspected". Every other visit since then the doctors just refer to my condition as ALS in their visit summaries.
with gratitude, Harvey