It does seem that drug trials are beginning for various forms of muscular dystrophy. A ‘lack of progress’ update on my situation… At this point,...
@Hutan - I don’t know if it would be worth speaking with Miriam Rodrigues…. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5611797/ She works out of...
I need to have my legs elevated by the evening, and sit with my back well-supported and then support my head with a hand. The more tired I am, the...
https://www.stuff.co.nz/nz-news/350386422/mothers-mission-spare-others-condition-saw-her-daughter-starve-death This is an article about a young...
I can feel this exhausted with my muscular dystrophy.
I can’t imagine Parkinson’s Disease ever getting renamed…
I think a lot easier to tolerate than having a tube through your nose and down your throat…. And the sedation means most people don’t remember the...
I have observed one PEG being placed. Sedation - not anaesthetic - was given. Endoscope put down into the stomach. Light on the end shows where...
Apologies if this is not relevant - but fatigue is my main issue. I now eventually have a muscular dystrophy diagnosis and ME has been taken off...
The issue of whether to provide alternative or supplemental feeding via a tube - PEG, PEJ, TPN - whatever, surely should have been based on three...
The drug development companies certainly like an easy way to get hold of participants…
Thanks @SNT Gatchaman - that makes my head hurt!!! I’ve sent it on to Prof Jones in Reno… If he thinks it is interesting, he might explain to us...
I think the trial is happening here because there is a good neuromuscular disease registry which is run from Auckland. And possibly because we...
Hi everyone. There is a clinical trial for an anti-sense RNA treatment for FSHD which has been granted approval in NZ - I am very much hoping that...
I wonder why they have only picked those two.. In my FSHD group in NZ, apart from my previous diagnosis of ME, there are two people who had...
Have just had my second bout - I think with another cold virus at the same time… into week 4 or perhaps 5 now and not recovered. Better than I was...
I have been diagnosed with typical AVNRT’ (atrioventricular nodal reentry tachycardia) which is the most common form of SVT (supraventricular...
I think that the issue will be that if ME is seen - as Diabetes is or heart failure - as a long-term health condition, then disability is not...
I had a holter monitor on for a couple of days last week. I’m trying to get to the bottom of whether my issues with my heart rate are linked to my...
Ive been listening to the podcasts for some time now and I keep thinking i understand the genetics and epigenetics and then I realise I don’t...
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