Limb onset diagnosis

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Marieb425

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Moving over from the other forum, my husband received his diagnosis of Limb Onset ALS from a neuromuscular specialist. This was the second opinion with a specialist and the third time we’ve heard it recently so it wasn’t “new.” We are devastated because he’s 40 and we have two little kids.

Anyways here is the treatment plan - any thoughts as to how it looks and/or the trials? I will look the trials up tonight and I’ve also been researching medicine. He liked this dr a lot and so we will stay with them (Swedish). Thank you!
 

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lgelb

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This is a standard plan, and Dr. Elliott is a standard doc. You can find 4 trials recruiting in WA listed here. There are many other approaches to living out the best life possible; much of what differentiates PALS in its quality and quantity is under their control.

I'm sorry the dx was confirmed. We will support you however we can.
 

affected

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I'm so sorry you are in our boat, but we will walk along with you and with your PALS if he joins too.
Riluzole and Radicava are the 'medicines', but as Laurie notes, there are many other things we can do to promote health and if not slow progression, definitely not hasten progression.
We have some stickies on being newly diagnosed and anticipatory planning.
Some of our PALS feel supplements they use have also kept progression slow.
Trials are great to look at, but some have things that prevent taking part, so take a week or two now to get your feet and weigh up options.

 

Mana

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Also sorry to welcome you, Marie. you will find open hearts, understanding, and good practical advice and information on this site. ❤️
 

Nikki J

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I would try for a trial. Aside from the merits of the drugs I would look at the trial structure both the burden ( visit frequency and testing) and the length / chance for placebo. Healey is shorter and I think placebo is less likely. They both have open label extension. That doesn’t necessarily mean healey is better.
being in a trial or study connects you with clinic staff and I think benefits you because of it.
 

Mana

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My husband is in a clinical trial and is very pleased with the connection this has created. Frequent check ins and assessments are a big benefit.
 

KimT

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I'm sorry you're here.

Being that your PALS is only 40, he should qualify for clinical trials. Each trial will offer a decision and you have to weigh the potential benefit of the trial against the amount of time, travel, discomfort it takes. Having two small children certainly comes into play.

I think the first trip to clinic should be productive.

Hoping for a slow progression and for your husband to make years of memories with you and your children.

Shorty after my diagnosis, I changed my mantra from dying of ALS to living with ALS.
 

Marieb425

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Thank you all. I asked him to ask about the time commitment for the trials at his next appointment. He’s started the Riluozole and the authorization for the Radicava seems to be in progress. He was called today by a nurse from the pharmaceutical company to talk to him about the logistics for taking the medicine.

I feel like we’ve been moving through the stages of grief - first there was great sadness, denial, and then anger (especially for myself with hearing the news the third time) and I think now there is acceptance.
 

affected

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So true, this is a grieving process, for both of you. I'm glad things are moving forward on your options.
 
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