@laurellinton
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Laurel Linton replied to the topic Genetics, How Does this Knowledge Change Things for You? in the forum Research Topics 8 months, 1 week ago
I found out I have the C9 gene mutation and it was devastating to learn I have it. It’s slow progressing so far but since my first symptom almost two years ago to my diagnosis Nov 2021 I have gotten very tired. I take each beautiful day I’m able to with thankfulness to God. But I’m tired. God bless all those that are fighting this devastating diagnosis.
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Laurel Linton replied to the topic ALS Community Invited to Help Set Research Priorities in US in the forum Research Topics 1 year ago
I agree that familial C9 would be a good place to start!
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Laurel Linton replied to the topic C9 research in the forum Research Topics 1 year ago
Lisa,
Good morning, I just saw your link about the C9 Gene and I was diagnosed November 2021 with ALS and also with the C9 gene. Is there a way to join the study now or is it to late.
Thanks for any help you can share with any of us.
Take Care,
Laurel Linton
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Laurel Linton posted an update 1 year, 1 month ago
@trespalmas thanks Judy for the 2 drugs uou mentioned. I’m on tudca but I will check the Goats Rue! Again thanks for the info
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Laurel Linton replied to the topic Work arounds for the bitter taste of phenylbutryate? in the forum Diagnosis Information and General Questions 1 year, 1 month ago
Where did get your phenylbutryate and tudca? I have Tudca pills from Amazon but not the sodium PB.
Thanks
Laurel
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Laurel Linton replied to the topic artificial voice/speech equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 year, 1 month ago
I was diagnosed with als 6 months ago and was losing my ability to swallow when I was referred to the Deanna Protocol. It was developed by a doctor trying to save his daughter. She was given 2 years to live and it’s 12 years later and she is alive and moving. I have been taking this and my ability to swallow has returned and the disease seems to h…[Read more]
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Laurel Linton replied to the topic Using immunosuppressant drugs to halt / slow down ALS progression in the forum Research Topics 1 year, 1 month ago
I would be very interested in learning more about this topic!
Thanks
Laurel -
Laurel Linton became a registered member 1 year, 4 months ago
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Hello Laurel, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I l…[Read more]
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Hello Laurel,
Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by typing a…[Read more]
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Laurel,
It might be good news that you found out that you the C9 mutation. There are some clinical studies and trials that are targeting specific gene mutations. Have you checked into those? Is that something you have discussed with your medical team? Keep enjoying each day that you are given! I will keep you in my prayers.
Amanda