Update

[Hagins]

Previous thread

I have a "suspected" ALS diagnosis, I am taking Riluzole (with the only noticeable effect being somewhat light headed) and recently Baclofen (which has significantly helped stiffness in my ankles). A walker or using two canes provide adequate stability for some slooow walkin'.
I am trying to consider all my options including supportive alternative care. (Are there any forum threads regarding those topics?)
So, from smoky but beautiful Oregon, may you all have a good week ahead filled with awareness and happiness when ever possible.

 

[lgelb]

Likewise, Hagins, and if you can be more specific about what you mean by "supportive alternative care," we can direct you to threads.

Also, are you in the process of getting a second opinion on the diagnosis?

Best,
Laurie

 

[affected]

Past thread

NMD versus Cervical Spondylitic Myelopathy

Hello my friends, I am facing an extremely difficult decision. My symptoms started about 10 months ago and continue to progress. I have a spastic gait, muscle loss, loss of balance that has led to several falls, muscle cramping in my legs and ongoing fasciculations primarily in my legs but also...

www.alsforums.com

We recommend a lot of supportive care, but do you have something in mind? Try the search function and our stickies.

 

[Clearwater AL]

Hagins, it's up to you. Maybe you might share where your diagnosis process is
being conducted and what/who ALS specialist is working with you.
We have members who might affirm you're seeing one of the best.

The more info our very ALS knowledgeable members have is helpful. Also
for suggestions to where you may go for a second opinion if needed in
your area.

 

[Hagins]

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

 

[affected]

we tried acupuncture and homeopathics

no results from acupuncture and an exacerbation of bulbar symptoms with homeopathics

please be careful trying the strategy of throw everything at it in one go, as things can interact unexpectedly.

Suspected ALS is frustrating, usually they use possible and probable
is there a diagnostic code they used?

 

[Nikki J]

There used to be an official category in the ALS criteria called suspected ALS but those criteria have not been used for many many years. If I remember correctly it referred to someone with lower motor neurons signs only. No one should be using those criteria now though. I would guess suspected in your context meant they thought it probably would turn out to be ALS but weren’t sure. But if others are coding ALS that is something that you need explained

you deserve clarity here and should get all your notes but also ask where you fall in El escorial criteria. Those are the ones currently in use thought new ones are probably coming. What did the doctor say about Healey? You must not have got into it if they have you taking TUDCA and sodium phenylbutyrate because those are exclusions. Did you not qualify? If so why? That would likely relate to your diagnostic certainty or was it full in your area?

i understand the urge to try everything but as Tillie says it isn’t true it can’t hurt and there are a fair number of things that have some science behind them in the way of supplements but you can’t do them all so it might be an idea to slow down get some diagnostic clarity and make a plan with whatever neuromuscular you pick for your care