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Peter Powell replied to the topic Any recommendations for good "mid level" technical reference on ALS neurology? in the forum Diagnosis Information and General Questions 1 year, 8 months ago

Sorry,it’s “Quanta” magazine
Peter Powell replied to the topic Any recommendations for good "mid level" technical reference on ALS neurology? in the forum Diagnosis Information and General Questions 1 year, 8 months ago

Hi Shawn ,not sure if this is what you are after, however I stumbled upon a magazine in the Flipboard app, titled biology.

There are many articles covering much more than ALS, however I found some interesting once’s referencing ALS. Most of the articles seem to come from “ Quantum” magazine.

These are not articles updating trials, but does provi…[Read more]
Peter Powell started the topic Infusions? in the forum Diagnosis Information and General Questions 1 year, 11 months ago

Hi, I’ve been on Imoglobin infusions for about 12 months now, every two weeks. I asked my neurologist to stop these as the day of the infusion and the following day were extremely tiring with no noticeable change in my symptoms. However I am now experiencing an increased weakness in my muscles. So, wondering if the infusions did help?

so, my…[Read more]
Laurie Tomasello and Peter Powell are now friends 1 year, 11 months ago
Peter Powell started the topic ALS Trial to New Drug Years Away? in the forum Research Topics 2 years ago

I am a terminally diagnosed ALS sufferer.

Along with the thousands like me we voraciously consume information on potential new drugs to slow or even reverse the terrible symptoms and disease.

Our optimism is virtually always destroyed by the mantra at the end of each report –
“A possible treatment resulting from this study is years a…[Read more]
Peter Powell replied to the topic Query regarding products I have heard about. in the forum Diagnosis Information and General Questions 2 years, 2 months ago

Thanks Dagmar, I won’t be trying it without consulting with my Doctor as I am on the Rescue ALS ( gold) trial which is apparently going well. Just interested as it was mentioned to me by a PAL.
Peter Powell started the topic Query regarding products I have heard about. in the forum Diagnosis Information and General Questions 2 years, 2 months ago

Hi, Has anyone heard of the products Leapto be fit and L-Serine? Just wondering if they offer anything, or just another scam type products?
Peter Powell posted an update 2 years, 3 months ago

Hi, Has anyone heard of the products Leapto be fit and L-Serine? Just wondering if they offer anything, or just another scam type products?
Peter Powell and Mary Ball Powell are now friends 2 years, 3 months ago
Peter Powell posted an update 2 years, 5 months ago

Just a very obtuse thought…reading about a sporting star caught taking performance enhancing drugs. One drug he took is to build and repair muscles. Thinking, this is what weight lifters do all the time. Is there a chance that these muscle repair/build drugs could have a role with ALS sufferers? Not expecting any positive outcomes….just a thought.
Dagmar Munn and Peter Powell are now friends 2 years, 6 months ago
Danielle Uskovic and Peter Powell are now friends 2 years, 6 months ago
Peter Powell posted an update 2 years, 6 months ago

A month now in the CNM-AU8 Trial, however I was a late inclusion. I believe others have been on the trial for 6 months or so. Keen to hear from others regarding their experiences, and obviously, any improvements.
Peter Powell posted a new activity comment 2 years, 7 months ago

Hi Cindy, it’s the CNM Au8 trial that is being conducted world wide, now in Phase 2. It had promising results from Phase 1, and hoping for good results from this Phase. I have 3 months supply of daily liquid gold ( or placebo!) to take and they will undertake assessments throughout the trial to determine if it is working, or not.

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Amanda and Peter Powell are now friends 2 years, 7 months ago
Peter Powell posted an update 2 years, 7 months ago

Hi, I haven’t been on here for a while, just thought I would let you know I started the Gold Trial yesterday, with baseline done and three months of Gold medicine ( or placebo!). Easy to take, small bottle of coloured liquid, tastes pretty much like water. I was the last person signed up ( they kept a place for me while looking at other d…[Read more]
- Cindy replied 2 years, 7 months ago
  
  What is the Gold Trial?
  - Peter Powell replied 2 years, 7 months ago
    
    Hi Cindy, it’s the CNM Au8 trial that is being conducted world wide, now in Phase 2. It had promising results from Phase 1, and hoping for good results from this Phase. I have 3 months supply of daily liquid gold ( or placebo!) to take and they will undertake assessments throughout the trial to determine if it is working, or not.
Terri stephens and Peter Powell are now friends 2 years, 11 months ago
- Terri stephens replied 2 years, 11 months ago
  
  CNM- AU8 sounds promising. I want to try
- Terri stephens replied 2 years, 11 months ago
  
  I understand on the placebo. I’m not fond of that. I definitely want to try it
Peter Powell replied to the topic CNM-AU8 Trial in the forum Diagnosis Information and General Questions 2 years, 11 months ago

Hi, I am in Sydney, Australia and starting the screening process on 5 May with the trial commencing a month later. The screening seems to be pretty extensive, but also baselines you for comparison throughout the 40 weeks.

The articles says that it is being conducted at various sites around the world with US included of course.
Peter Powell started the topic CNM-AU8 Trial in the forum Diagnosis Information and General Questions 2 years, 11 months ago

Hi, Is anyone on, or planning to participate in the CNM-AU8 Trial?

I have been asked to participate next month.
Peter Powell posted an update 2 years, 11 months ago

Hi, I thought I read posts regarding Riluzole, however I can’t locate them?
I have just started on Riluzole – 3 weeks and getting headaches that wake me up halfway through the night. Is this a normal side affect, and does it go away after a period of time?
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