Sorry,it’s “Quanta” magazine

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… Read more

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,… Read more

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… Read more

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.

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?

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.

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

I have been asked to participate next month.

Thanks Lisa, I think I know what the results will show, just need to get on with it and hope the progression is slow.

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… Read more

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… Read more

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… Read more

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.

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.