Delaying Progression

em9988

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My mom was just diagnosed about 1.5 months ago after the symptoms first started last summer, so far she has drop foot and slight numbness in the right foot (where it first started) as well as muscle tightness in her left leg.

So I can at least hopefully say she so far has a slower progression of the usual ALS, however, after the diagnosis, she hasn't been taking riluzole after talking to a family friend who was diagnosed at age 38 and is now almost 60 who ONLY just started to lose function of his hands (started at foot just like my mom). After some personal research and advice from the family friend, we have decided that if there is no real cure, we have nothing to lose in terms of trying everything we can naturally to slow the progression and my mom has begun to take Tumeric supplements as well as acupuncture and Chinese holistic medicine as well as increased protein diet as well as a lot of stretching every day.

It's been about 2 weeks since we started and my mom's right foot (where it started) has improved just a little bit. she actually previously had to use a foot drop brace or else her foot would drag as she walked which made unassisted walking almost impossible, however, she is now able to slowly make her way across the room.

Although I'm not going to say that this is sign of reversal, I think if we employ enough new lifestyle habits it can possibly slow this down or improve her baseline health and fitness enough to slow this down and improve her quality of life.

Does anyone have any thoughts or their own tips for this type of approach to combating ALS?
 

affected

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It's so difficult to truly comment when we have never seen her. I would however ask if you got a second opinion from a neuromuscular specialist and if the diagnosis was ALS and not PLS?
ALS just doesn't get better as a rule. Many use those supplements and therapies, but to slow progression not to make reversals and improvement of symptoms.
It could be worth going back to her neurologist and having this all verified and documented.
By all means, anything that helps or slows is worth pursuing. Please be aware however that while PLS and UMN dominant PALS can be very slow progressing, this disease is most notable for being totally unpredictable.

Please do whatever you feel is helping and slowing and keep us updated of course!

You will hopefully get some replies here from other slow progressing members and the regimens they follow. What is most frustrating I think is that what works for one PALS may do nothing for the next. But unless we compare notes we don't know what we feel is most worth trying.
 

Nikki J

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We are all different and it is impossible to know if what we do makes a difference in our progression. Early on I had a temporary reversal of my drop foot ( verified by my neurologist) it lasted a few months and slowly returned. What had I been doing? Taking riluzole for a few weeks. 7 plus years later I still live independently with only an afo

regarding slow progression one of my relatives had symptoms in one leg for at least 12 years she took absolutely nothing. It eventually spread and she died after 17 plus years.

I know someone else with single leg symptoms who takes only riluzole and is 13 years and counting.

another person I knew who took nothing was 22 years in when they moved and I lost contact. They used a manual wheelchair no respiratory support or feeding tube.

my point is you can’t say what helps and some PALS do have slow progression, plateaus and even sometimes reversals. Dr Bedlack studies reversals but only if they last at least 6 months I think.

studies have shown PALS who take riluzole on average live longer than those who don’t

everyone has to find their own path
 

em9988

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It's so difficult to truly comment when we have never seen her. I would however ask if you got a second opinion from a neuromuscular specialist and if the diagnosis was ALS and not PLS?
ALS just doesn't get better as a rule. Many use those supplements and therapies, but to slow progression not to make reversals and improvement of symptoms.
It could be worth going back to her neurologist and having this all verified and documented.
By all means, anything that helps or slows is worth pursuing. Please be aware however that while PLS and UMN dominant PALS can be very slow progressing, this disease is most notable for being totally unpredictable.

Please do whatever you feel is helping and slowing and keep us updated of course!

You will hopefully get some replies here from other slow progressing members and the regimens they follow. What is most frustrating I think is that what works for one PALS may do nothing for the next. But unless we compare notes we don't know what we feel is most worth trying.

We've actually seen a few neuromuscular neurologists, however, it wasn't until we even went to see a Neurologist who specializes in ALS at Mount Sinais ALS Center that we got a definite diagnosis. the previous neurologists thought she has injured her back or compressed her lower spine/lesion on her spinal nerve? while another one diagnosed her with an injured peroneal nerve in her knee after her rapid weight loss during covid because shes actually a nurse and during the pandemic the heavy workload mixed with the fact that she had to wear so much ppe as well as double masks ( she said it was like a sauna at work and was sweating massive amounts) caused her to lose almost 10 pounds in the year and she was already the type of not gain weight easily. She went from 105 pounds to 95 rather quickly, however, after she was unable to work and stayed at home she regained some of the weight back immediately.

But for sure we are also looking into getting a second opinion from another neuromuscular specialist.

We are all different and it is impossible to know if what we do makes a difference in our progression. Early on I had a temporary reversal of my drop foot ( verified by my neurologist) it lasted a few months and slowly returned. What had I been doing? Taking riluzole for a few weeks. 7 plus years later I still live independently with only an afo

regarding slow progression one of my relatives had symptoms in one leg for at least 12 years she took absolutely nothing. It eventually spread and she died after 17 plus years.

I know someone else with single leg symptoms who takes only riluzole and is 13 years and counting.

another person I knew who took nothing was 22 years in when they moved and I lost contact. They used a manual wheelchair no respiratory support or feeding tube.

my point is you can’t say what helps and some PALS do have slow progression, plateaus and even sometimes reversals. Dr Bedlack studies reversals but only if they last at least 6 months I think.

studies have shown PALS who take riluzole on average live longer than those who don’t

everyone has to find their own path

That is sort of relieving to hear in a sense as I've mostly only read about fast progressions and the initial results on google always state the average to be between 2-5 years and some even quicker.

Bedlack is definitely one person I came across when I was doing my research, It is where I learned that taking Tumeric supplements might help slow it down.

and yeah for sure, but my mom's baseline health has never been good and she is afraid of the side effects of Riluzole and would rather have a better quality of life on a daily basis
 

Nikki J

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The theracurmin ( turmeric) is supposed to reduce inflammation and a subset of PALS have an inflammatory form. I do- I know because of my FALS mutation. I did start theracurmin a while back no noticeable effect but reducing inflammation still sounds like a good idea

i think even the statistics you quote say about 10 percent of PALS live longer than 5 years and I have heard neurologists say they think PALS are surviving a bit longer than they used to

it is of course your mother’s choice on riluzole. Unless she has underlying liver disease or another contraindication is there a reason she isn’t at least trying it? Many of us take it with no real side effects at all. If I recall I was minimally queasy for a couple of weeks at first but it passed. She might be a no side effect person. If she tried it and it disagreed with her she could always stop but she can’t know unless she tries. My neurologist says it works best given early in disease
 

Pauliguy

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Riluzole 50mg twice daily
Curcumin C3 complex 2g twice daily (Costco) that is 8 tabs
Ginkgo Biloba twice daily (Costco)
TUDCA (tauroursodeoxycholic acid/taurursodiol) 1g twice daily (Nutricost) that is 4 home made tabs
Sodium phenylbutyrate 3g twice daily, or 2g three times daily
Acetyl L-Carnitine today, 1g 3 times daily that is 3 home make tabs

I am 68 male and diagnosed with Bulbar and left side weakness 3 months ago. My left hand strength is poor and my speech is slow and measured. Except for Riluzole and Sodium phenylbutyrate, the others are non prescription. Check out www.alsuntangled.com for alternant treatments. It is curious that your mom is not at least on Riluzole, I am pulling out all guns to fight this.
 

Samkl

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Where do you get your sodium phenybutyrate, Pauliguy
 

Pauliguy

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My doctor at Kaiser prescribed it for me. There are not many manufactures of it. Par Pharma make what I am taking. Kaiser sometimes has a difficult getting it.
 

lgelb

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The brand name is Buphenyl®, manufactured by Horizon.
 

Bestfriends14

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@Pauliguy Hi there and a sad but warm welcome to the forum. Could I ask, please, if the sodium phenylbutyrate is expensive? I'd like to pair that with the Tudca my husband is taking, but everywhere I look it's outrageously expensive.
 

Mon

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Does anyone try high protein drinks? Im wondering if those help feed the muscles...anyone find them helpful?
 

lgelb

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It is the nerves controlling the muscles that die in ALS, not the muscles like with muscular dystrophy. Keeping at a "sweet spot" BMI (a little above what is considered "ideal weight," ~31) with whatever diet best supports the PALS is the main thing, while avoiding foods (if there is not a tube) that are hardest for coughing/swallowing like corn, peas, rice, leafy vegetables, etc.

Protein is important, but too much taxes the kidneys, and most protein powders are a chemical company's dream (the Naked brand on Amazon is a notable exception). You don't want to overload the body with compounds that it has to work hard to metabolize, since we know ALS damages metabolism already. So real food, even if blended (and pureed meats, raw/lightly cooked eggs are always an option), is best.
 

Mon

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Thanks Laurie. I was uncertain if protein type drinks are a good idea. I think you are right though, best to get from real food source.
 

Pauliguy

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@Bestfriends14, my doctor prescribed sodium phenylbutyrate, and my copay is $10/month. I understand it can cost between $5,000 and $7,000 a month if not covered by insurance.
 

Bestfriends14

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Thank you @Pauliguy ! We're going to try to see if my husband's doctor will prescribe it for him. I am not optimistic, though, as doctors don't colour outside the lines, so to speak, here in Canada. 🤞🤞🤞🤞
 
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