Diagnosed on November 1, 2021

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dbel

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11/2021
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I was blind sided and was diagnosed on 11/1/21 with ALS. It started in Fall of 2020 with what I thought was carpal tunnel. My symptoms seemed to improve with splints and rest. Then during July 2021, I started to notice right hand weakness, especially in my pincers. I was seen by a neurologist in August and all the test (MRI, blood work, EMG etc) were initiated. EMG was abnormal for my right hand. MRI returned normal. Blood work returned normal. I was started on riluzole.

I was prescribed three months of IVIG infusion on 11/29/21 as my GM1 antibodies were moderately elevated. However, I am not responding as my right hand and arm seems to be significantly weaker as well as the neurologist stressed that the IVIG infusion was more of a last ditch-effort. The neurologist who diagnosed me is an ALS specialist and I have started attending the ALS Clinic.

I am 52 years old with two sons ages 15 and 17 and a very supportive husband. My sons, my immediate family and my co-workers are aware of my diagnosis which was so hard for me to share. Each time I share my diagnosis, it feels that I am reliving the grieving process.

I am looking into either starting the radicava infusions once I complete my IVIG infusions in early February. My other option is participating in the oral radicava trials where I would be either receiving radicava orally on its current IV dosage schedule or receiving oral radicava on a more frequent dosage schedule than it is currently offered intravenously. I am wondering if anyone has any thoughts on radicava and the trials. Combat clinical trials are currently offered in my area and Amylyx and Healy Platform trials will be opening up in the next couple of months. I'm not just not sure which trial to participate in. I welcome anyone's thoughts/opinions.

I have started taking Tudca in hopes of starting my own Amylyx trials :). I am so thankful for this forum which I have been perusing through on almost a daily basis since I was diagnosed. It gives me some hope that there is life after being diagnosed as well as that I am not alone on this journey. It has been quite the roller coaster and am trying to practice gratitude and staying present in the moment each day but it is a challenge, especially as I try to plan for the future (ie moving to a home with a master on the main, connecting with long term disabilities, SSI, etc). I appreciate everyone taking the time to read my post.
 
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jeff9000

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Sep 30, 2021
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PALS
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11/2021
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NC
Sorry to welcome you here. I was also diagnosed in November so we share a common timeline. The decision around trials is a bit daunting (at least to me). The risk of getting placebo weighs heavily and then trying to decide which trial 😵‍💫 Given that I am working with Duke ALS I opted for the Theracurmin trial where I’ll receive product by default. I don’t have high hopes but at least something is being done.
 

Nikki J

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Sorry to welcome you.

re trials you can do iv radicava and a trial as long as you have been on radicava a month ( I think that is the time) at your assessment for trial entry. That is because it s standard of care. You also have to be off things that are currently under investigation for the 30 days prior. That includes tudca and theracurmin among others

you have to decide for yourself of course but I think I would do radicava for a month and then try for whatever is open. Healey has less chance of placebo than phoenix I believe and it is shorter with guaranteed open label at 6 months
 

Mary2

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May 1, 2021
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CALS
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04/2021
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GA
Sorry to welcome you here dbel. My PALS was diagnosed with peripheral neuropathy before his ALS diagnosis and had IVIG for awhile. IVIG seemed to help some but not to the degree it helps others with neurological disorders. Eventually he progressed and another EMG was performed and his diagnosis was changed to ALS. Having a supportive husband and family is key. I have found this forum invaluable and the ALS Association has been helpful as well.
 

dbel

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Dec 2, 2021
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DX MND
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11/2021
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@Jeff900-yes deciding on what clinical trial to participate in is very daunting. I'm hoping that the recent ALS bill that passed in the house and the senate and is now waiting for the president's signature will alleviate this stressful decision as the bill will allow early access to promising therapies.
@nikki-thank you for your thoughts regarding trying IV radicava for a month and the Healy trials. I've seen several of your posts in the forum and appreciate you sharing your knowledge and experience.
@Mary2-unfortunately, the IVIG does not seem to be working at all and I'm wondering if I should even do the last two months. You are so right that having a supportive tribe is so key. I can't imagine doing this alone. My family and my work family have no idea that they are helping carry me through each day.
 

suziQ

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Joined
Oct 30, 2021
Messages
28
Reason
PALS
Diagnosis
10/2021
Country
US
State
MI
Diagnosed in October - bulbar onset. Was blind sided by it too. Never crossed my mind that it was ALS effecting my speech. Started taking Riluzole in late October after the second opinion confirmed. i haven't done Radicava because my doctor is on the fence about it. Was screened last week for the Courage Study which is on reldesemtiv. The first 24 weeks i could be on a placebo but the second 24 weeks i would be on the actual medication. Worth it for me. i think i would be willing to try any study qualified for. Should know next week if I qualify for Courage

i live alone and it hasn't been too bad for me. i do have friends and family willing to help but right now don't need much.
 

steve613

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Sep 26, 2021
Messages
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Loved one DX
Diagnosis
9/2021
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US
State
FL
City
Boca Raton
Hello dbel
We just enrolled in a clinical trial at Sean Healy (Mass General). We were careful to choose a trial that a) that randomized 2:1 active drug to placebo, increasing the likelihood of getting the drug, and b) that had an open label phase where all subjects get active drug in the second half.

The rule for this trial (and for many others) is that stable doses of riluzole and radicava are permitted provided they have been in place for at least a month. We were on TUDCA/sodium phenylbutyrate [AMX0035] (purchased at Wellpack, a compounding pharmacy) and had to stop it in order to get into the trial. When the FDA approves the combination then it will be permitted in the context of the trial. They also didn't permit metformin unless it is for diabetes.

The other thing to be mindful of when you consider trials is that you can only participate in one at a time. Therefore if you choose the oral radicava trial then you will be ineligible to be in trials of other investigational drugs, until the trial is complete.

One last point: we were encouraged to apply for medicare and social security, then found out that radicava infusions would not be supported at home, and would have a copay of $3600/month, whereas Searchlight Support will pay the copay with $0 cost to the patient if you have commercial insurance. It was impossible for us to sort it out before we switched insurance to medicare and supplements. Then when we found out we had to cancel medicare and social security and go back to commercial insurance.
 
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