Unfortunately what this lady is reporting is all too common. I feel if we ALL had access to an MG Nurse Specialist or a dedicated Neuromuscular Nurse Specialist, this would provide a better continuity of care for each of us, and liaison between GP, Neurologist and us, the patient would be better. A typical example of communication breakdown is when our Neurologist changes the dose of our medication or changes our medication, it takes forever for this to actually get to our GP so prescriptions can be altered. My Mycophenolate dose was altered downwards and the letter from my Neurologist has still not arrived into my GP’s System One and therefore has not been altered on my repeat prescription. Thankfully this has been an alteration downwards and is something I could implement straight away myself, but there have been many many instances in the recent past when doses are altered upwards and this has involved me having to chase and chase to get this changed. All this is very stressful. I feel sorry for this lady. In my experience when you are not feeling well, and you have to deal with these types of administrative shortfalls, it just adds to the stress levels we are being told to avoid!

Hats of to the GP for considering MG 👏. I don't think most would of done?

I think this is worth sharing . I'm supprised there are so few viewing 😮

Dr Dodd , thank you so much for the exciting and informative presentativen given with clarity and ease. Ipray you and your colleages are able to continue with this important rare medical conditions.

Thank you so much.may I add that I would like more information about CMS.I am 73 and was diagnosed in1952 and have lived with it my entire life. I take 34 Dap which was not mentioned and mestinon also not mentioned. I have chronic asthma and a pacemaker for a heart condition and very high AF. So I don't know how much is causing my .condition..my heart, my asthma or my CMS..but I know that I am suffering worse than ever.thank you for your interest in this and I welcome any advice you can provide.

Great presentation and as medically technical MG is etc, I found it relatively easy to follow the graphs. This could be due to having gen MG for 44 years and hearing a lot of the medical terms. However, i still can hardly find any info on long term MG like for me and i still dont understand that having had a thymectomy 40 years ago, MG can become intensly worse much later down the line. Looking forward to the next presentation. 👊💥 smash MG

Thank you Dr Dodd. An excellent presentation. Helping us understand our condition and what’s going on in the area of research. I am looking forward to any next presentation with updates on new available treatments. 💐

Excellent presentation. Thanks so much to Dr Dodd, Tracey and her colleagues at Myaware.