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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, 1 month 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, 1 month 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, 3 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]
Peter Powell started the topic ALS Trial to New Drug Years Away? in the forum Research Topics 1 year, 4 months 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 1 year, 7 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 1 year, 7 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 1 year, 7 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 1 year, 8 months ago
Peter Powell posted an update 1 year, 10 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.
Peter Powell posted an update 1 year, 11 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 an update 2 years 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 ago
  
  What is the Gold Trial?
  - Peter Powell replied 1 year, 12 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.
Peter Powell replied to the topic CNM-AU8 Trial in the forum Diagnosis Information and General Questions 2 years, 3 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, 3 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, 4 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?
Peter Powell replied to the topic Diagnosis and ALS in the forum Diagnosis Information and General Questions 2 years, 5 months ago

Thanks Lisa, I think I know what the results will show, just need to get on with it and hope the progression is slow.
Peter Powell replied to the topic Diagnosis and ALS in the forum Diagnosis Information and General Questions 2 years, 5 months ago

Hi, I’m really confused now. A well recognised Neurologist said I have ALS, after examination, an MRI and an EMG. He handed me over to another world recognised Neurologist who examined me, re-did the EMG and did a brain scan.

The outcomes of the second visit were that my results were “abnormal” in both the EMG and the brain scan for an ALS dia…[Read more]
Peter Powell started the topic ALS TRIALS in the forum Diagnosis Information and General Questions 2 years, 5 months ago

Hi, I’m seeinG my specialist next Friday the 6th March and they are asking me to sign up for a CNM-Au8 study over 40 weeks to slow progression of ALS.

Whilst I am super keen to participate in any trials, half the participants will be given a placebo. I am really keen to trial the new drug, but not keen to “waste” 40 weeks drinking coloure…[Read more]
Peter Powell replied to the topic Diagnosis and ALS in the forum Diagnosis Information and General Questions 2 years, 5 months ago

Hi, Only 6 days since being diagnosed by a highly regarded Neurology Professor and have had an MRI & a nerve conduction study. Symptoms are a weakness and muscle loss in my right hand, shortness of breath on exertion and the doc says my right leg lacks strength. All else is fine.

Seeing a highly regarded Neurology specialist and vo…[Read more]
- Amanda replied 2 years, 5 months ago
  
  Hello Peter, and thank you for posting on the forum. There is a battery of test that are typically conducted including a nerve conduction. Different Clinics may use different assessments to collect information. Normally they are ruling out any other disease or illness that could be the cause of your weaknesses and other symptoms. ALS mirrors many…[Read more]
Peter Powell started the topic Gluten free diet? in the forum Living With ALS 2 years, 5 months ago

Hi I read that there is a strong connection (negative) between Gluten and ALS. Do people follow a gluten free diet?

I don’t currently, but seriously considering it.
Peter Powell replied to the topic The impact of having ALS on a spouse in the forum ALS and Relationships 2 years, 5 months ago

This is the most difficult part for me. I want/need tow keep working which means I am away from home, however she needs me right now. I worry much more about her than my prognosis.
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