[Peter Powell]

Sorry,it’s “Quanta” magazine

[Peter Powell]

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 provide an insight into what world biologists are focussing on and their particular studies and findings. Hope it helps

[Peter Powell]

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]

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]

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]

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 diagnosis.  He then went looking for the blood tests and lumbar procedure ( which were not done by the previous Neurologist).  One comment was that it is usually the dominant hand that deteriorates and then the same side leg.  My non dominant hand is weaker with the opposite leg weaker.

At this point I was close to tears thinking I may not have ALS after all, however they would not say that, instead they have organised the blood tests, a lumbar puncture and a five day hospital procedure which I don’t really understand to remove “ bad” protein and inject “ good” protein.  They have also started me on Riluzole, but another positive was that they didn’t want to start me on any of the trials yet.

So, I guess all I can do is wait for the three outcomes.  I did do the ALFRS score with a 36 and 44, so I am probably still in denial, hoping for a different outcome, knowing that I have some of the symptoms of ALS.

Anyhow, keen to get any feedback from people who know so much more than I do about this horrible disease.

 

[Peter Powell]

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 volunteering for a trial in another week.

However, my concern is that I have read how difficult it is to determine an ALS prognosis, and involves a specific blood test and a spinal tap.  Having neither of these raise some doubt about my diagnoses. Whilst I respect the two highly regarded Professors, shouldn’t I have had more tests to confirm?

Obviously still in denial mode.

 

[Peter Powell]

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.