@minsnick
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Amanda started the topic Pre-fALS Clinic Visit in the forum Diagnosis Information and General Questions 2 months, 2 weeks ago
Good Morning (Florida Time) Community,
Sorry, I was MIA for a few days. I had my pre-fALS Clinic visit last week. I got through another EMG, nerve testing, cognitive testing and, yes, I made it through the lumbar puncture without passing out! The lidocaine shots (at least 3, but I think 4) hurt more than the actual procedure. Those felt like…[Read more]
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Amanda started the topic Please take a look at the forum guidelines in the forum Living With ALS 2 months, 3 weeks ago
Please take a moment to read the forum guidelines and rules. It is vital that we provide useful information to one another. ALS is a devastating diagnosis and it can cause a great deal of stress and anxiety. It is essential that we are supportive of one another. If you are posting information regarding treatments or topics, please include the…[Read more]
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Amanda started the topic Welcome new Forum Members in the forum Living With ALS 2 months, 3 weeks ago
Hello community! We have been getting a lot of new members this past month. Some are pALS, and others are loved ones and care givers. Thank you to everyone who has reached out and made members feel welcomed. The information and support you provide is endless.
Do you have any advice or information to share with new members? What would that be?
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Amanda replied to the topic In Loving Memory of my twin who last her fight with ALS in 2020. in the forum In Loving Memory 2 months, 4 weeks ago
Lori,
Your words are so elegant and beautiful. I’m sure they don’t compare to your twin. Thank you for sharing Christie’s story.Amanda
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Amanda replied to the topic Any news from Tofersen phase III clinical trial? in the forum Research Topics 3 months ago
Les, have you reached out to the company or one of the clinics participating in the trials? They may be in a good place to provide you accurate information. If you do hear from them, please share the information on the forums!!
Amanda -
Amanda started the topic Most Common Questions in the forum Living With ALS 3 months ago
When you were (or if you are) first diagnosed what did you want to know from your doctors? What information and resources were the most helpful?
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Amanda replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 3 months ago
David – the lumbar puncture was painless?? Seriously??? Wow! That is so awesome. How are you feeling now?
Amanda -
Amanda replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 3 months ago
David – the lumbar puncture was painless?? Seriously??? Wow! That is so awesome. How are you feeling now?
Amanda -
Amanda replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 3 months ago
David – the lumbar puncture was painless?? Seriously??? Wow! That is so awesome. How are you feeling now?
Amanda -
Amanda replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 3 months ago
David – the lumbar puncture was painless?? Seriously??? Wow! That is so awesome. How are you feeling now?
Amanda -
Amanda started the topic Please Keep In Mind in the forum Living With ALS 3 months, 1 week ago
Hello Forum Members,
Please keep in mind that our forum is intended to be supportive and informative. We are not medical professionals and no one should be asking for medical advice, medical opinions or giving medical information.
We all know, all to well, that the road to ALS is long and usually frustrating. We also know that there are often…[Read more]
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Amanda replied to the topic Speak up and let us know what topics are useful! in the forum Using our Forums 3 months, 1 week ago
Carolyn, I think that would be a great post and others would like to learn about it too!
Amanda -
Amanda and
Scotty are now friends 3 months, 1 week ago
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Amanda replied to the topic Clinic Visit Routine in the forum Living With ALS 3 months, 1 week ago
Kathy, Carolyn, Mark and Marianne – This information is awesome and highlights some of the kindness that exists in our world. Mark I agree with Carolyn, your words are so accurate! When we post discussions about end of life, hospice or similar topics, we give a great deal of thought to the words we use. I think it is extremely important that we…[Read more]
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Amanda replied to the topic can someone give advice? in the forum Diagnosis Information and General Questions 3 months, 1 week ago
Jerry,
That is a lot of history and information to consider. Please keep in mind that we are not professionals in the medical field and we need to be cautious about responding with advice. What our members can do is compare notes and experiences on how ALS has manifested for them or their loved one. As you know each case is different; however…[Read more] -
Amanda replied to the topic Phases of Clinical Research – ALS treatments in the forum Research Topics 3 months, 2 weeks ago
You are right, it does not mention anything about investors because that wasn’t what I was searching for.
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Amanda changed their profile picture 3 months, 2 weeks ago
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Amanda changed their profile picture 3 months, 2 weeks ago
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Amanda replied to the topic Understanding PFT in the forum Diagnosis Information and General Questions 3 months, 2 weeks ago
Lisa,
That sounds so frustrating, beyond frustrating!!! Are any of these medical professionals specialist in the are of ALS? Have you inquired at any of the ALS clinics?
I sure hope you get some information and support soon.
Amanda
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Amanda started the topic Phases of Clinical Research – ALS treatments in the forum Research Topics 3 months, 3 weeks ago
“The phases of clinical research are the stages in which scientists conduct experiments with a health intervention to obtain sufficient evidence for a process considered effective as a medical treatment. For drug development, the clinical phases start with testing for safety in a few human subjects, then expand to many study participants…[Read more]
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