ALS treatments

[JohnnyMags]

Well last week I had to take my wife to the ER for the Nausea, stomach pain & lack of nutrition. That was a rather unpleasant experience a lot of waiting and I mean a lot. They diagnosed her with low sodium & low potassium. They gave her IV fluids and IV anti-nausea and they told her to stop taking two medications she was taking daily as well as prescribing an anti-nausea medication then we went home after 24 hours there.

Now my concern is she still has the nausea but not as bad and food still doesn't taste good but at least she is eating better. So I worry that she isn't cured (stomach) and it will eventually get back to where we were.
Speaking of taking things she was initially put on Riluzole but she stopped when the nausea got bad (it didn't help) now I saw something on a different website (TD_) which said Riluzole only extends life by 2-3 months. I've also seen claims that Riluzole gives you 25% more time ... which one is more accurate?
I also came across something called Deanna Protocol I assume it's more of a scam especially with the claims they have. I am bringing it up just to make sure I/we touch all the bases

 

[lgelb]

It can take time to get over low electrolytes. But to your point, I would try to understand why they were low to start with and avoid that scenario -- whether expending too much energy, changes in diet, etc. As an example, not saying this is her case, too much plain water can even contribute, flushing out the minerals she needs. Smoothies with banana, mango, oat milk are worth considering -- easy to process and heavy on the good stuff. Temperature and thickness of the liquids she gets are also worth tracking from the tolerability standpoint.

I would not advise that anyone with pre-existing electrolyte imbalances even consider the Deanna Protocol (megadosing multiple compounds based on theory, not fact, and a considerable metabolic burden for anyone) irrespective of my considering it a scam.

The effect that riluzole had back in the day was documented when health care in ALS was flat out different (BiPAP only inched into play in the early 90s; PEG tube placement rather the RIGs many clinicians prefer for PALS today were the norm well into the 2000s, edaravone was launched in the US in 2017, etc.)

And what we can establish today varies widely depending on the patient group. If there is one thing the studies agree on, it's the earlier, the better.

For my part, again having seen the data, my husband, who had many comorbidities, did not take it. He lived 5y post-dx. Again, for someone with GI issues and the compound's known hepatotoxicity, I don't think any expert would consider the risk/benefit ratio a slam dunk. That said, many here believe it has extended their lives and I don't doubt that. But it's certainly not right or necessary for everyone.

 

[Nikki J]

Even back in the day it was more accurate to say riluzole slowed by 10%. Which means the month number would vary by progression rate. When I started riluzole it was ultra early and both my doctor and the doctor I was seeing at NIH for a genetic study quoted 25% for early start. More recently at a conference a clinician researcher said 30% I thought he misspoke and asked at mgh they said 30% for early and they were prescribing when they had a high suspicion even

Not everyone tolerates riluzole though and you have to consider quality of life too. Did she have her endoscopy?

 

[JohnnyMags]

Yes she had the Endoscopy last Tue and it showed nothing. On Thursday we had the CT scan which I believe showed nothing.
We went to the ER after the CT scan because she was very weak and our doctor at the ALS clinic told us to go.
Now she's home with prescribed anti-nausea meds ... She still has the nausea but not as bad. She's also eating better. We have an appt with her PCP tomorrow. It's tough trying to unravel this non ALS problem especially knowing getting her better is just a preamble to the ALS.

 

[JohnnyMags]

PCP is kind of just guessing about the cause of this nausea. He increased the anti-nausea pill, told her to stop a water pill and she has to get a "Gastric Emptying Scan" ... I feel so bad that she is so uncomfortable and there is nothing I can do.

 

[KimT]

Water pills can definitely cause dehydration. Why was she taking it? Does she have high blood pressure or is she overweight?

If she isn't sugar restricted, coconut water is high in potassium and she can add a little to each glass of water she drinks. I make a shake with avocado, blueberries, full fat plain Greek yogurt and any other form of fruit. It tastes like a milkshake and has plenty of calories. I used to also use cocoa and allulose (a natural sweetener that doesn't spike blood sugar) and it tasted like a chocolate milkshake.

 

[JohnnyMags]

From what I gather the water pills prevented swelling and without them her ankles are visibly swollen. Her PCP advised her to stop them so we will see how that goes ... over the weekend she said she didn't feel right and she took one anyway but that was before her PCP said stop them. I don;t think she's sugar restricted and I'll run those concoctions by her but I will be surprised if she can tolerate them. She has an issue with most things not tasting good to her and that's why I'd be surprised. Thanks for the suggestions we will see.

 

[KimT]

Make sure her legs are elevated. That will reduce swelling. If she has a lift chair, it will be a comfortable option for sitting. I've used one since 2016. Also, massaging her legs might help.

 

[JohnnyMags]

I'm not sure what a lift chair is ... And I don't think we have one. What we have that she sits in most of the day is a recliner.

 

[Nikki J]

A lift chair is a power recliner that also can lift the person into a near stand position. As far as elevating legs a regular recliner works fine. The power one is nice as you can make small adjustments in recliner by pressing the remote and don’t have to struggle to get up

 

[KimT]

Also, most standard recliners are designed so that your feet hang off. Someone with ALS should have foot support, so you may want to take that into consideration. Some PALS put a pillow under their knees and their feet are fully supported.

 

[JohnnyMags]

OK thanks I will see if she can tolerate a pillow

 

[lgelb]

If a pillow doesn't work, any kind of ottoman, from a cheap cube or a rung on a stool/chair to real furniture, might work. You don't want to strain other muscle groups such as the hips.

 

[Hassan Abbas]

Dear I am using Riluzole for about 2 Years now as I was diagnosed in March 2023 with ALS. Well in my case riluzole is the only thing that I can rely on. However my condition is getting worse but the progression is really slow (Al Hamdulilah). May God bless ur wife with full recovery soon

 

[Hassan Abbas]

However, I've just started taking TMS therapy as suggested by my physician. Though it's been 3 weeks now but didn't get any good vibes yet. Well keeping the fingers cross and hoping for the best.