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Apologies if my random thought is completely inappropriate - and if so, please ignore me! Does ME need to be an acquired condition? I’m wondering from my position of having an inherited condition, but having been basically symptom-free (as far as I knew) for my childhood and the first 15 years...

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, i have been told I am not being considered for the FSHD drug trial in this country. Apparently I am not sufficiently affected. I haven’t actually...

@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 Auckland Hospital. She may have some good ideas. I wonder if she knows Paula Lorgelly…

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 more horizontal I get. When I sit in a chair, I need arms or a table so I can support my torso muscles. If I am going through a bad patch, I need to...

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 woman who starved to death after developing gastroparesis. It seems that this was triggered by having her appendix removed.

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 insertion procedure. The main barrier I have come across to PEG insertion in my previous working life is insufficient respiratory function. So those...

I have observed one PEG being placed. Sedation - not anaesthetic - was given. Endoscope put down into the stomach. Light on the end shows where the incision needs to be made. Local anaesthetic at the site. Small incision only. It doesn’t take long and in my experience is much better tolerated...

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 my list of medical issues. I still feel that fatigue is my biggest problem, and it’s not well recognized by the neurologists. They look for a muscle...

The issue of whether to provide alternative or supplemental feeding via a tube - PEG, PEJ, TPN - whatever, surely should have been based on three factors only - 1/ was Maeve capable of maintaining her nutrition and hydration orally, 2/ did she want to consider alternative feeding and 3/ was her...

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 over Spotify!

I think the trial is happening here because there is a good neuromuscular disease registry which is run from Auckland. And possibly because we can’t sue if anything goes wrong???!! They only need a small number of participants, and because of the nature of the treatment, no healthy volunteers...

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 can be part of it…. Even if I get the placebo! At least that way, if the treatment does work, I will have perhaps a chance at getting the drug in...

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 fibromyalgia diagnoses. Perhaps it is because the saliva test for FSHD is not yet FDA approved.

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 but a long way off my baseline. I had no sense of taste or smell for 2-3 weeks - returning now but quite variable. Ok for a short time and then...

I have been diagnosed with typical AVNRT’ (atrioventricular nodal reentry tachycardia) which is the most common form of SVT (supraventricular tachycardia). It is not dangerous (as long as your symptoms aren’t too bad and aren’t causing you to lose consciousness etc.) The management options I...

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 assumed. So the needs assessment service will just ‘opt out’ of the assessment on the grounds that you have a long-term health condition and not a...

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 FSHD. The health system is trying to find out whether I am making the issues up or not….! Anyway, I bent over to put on my socks and my heart rate...