Since no one knows the underlying cause of MG, we still don't know how to cure it. However, aside from avoiding the known factors such as drugs to avoid, certain foods such as quinine, high in magnesium, and herbs that may stimulate immune function, anything is worth trying. I believe using a common sense approach is the best one. Usually, if it sounds too good to be true, it is.

Rhanson's post is well worth posting in the entry or welcome page for this group!! And it's inspired me as well to make sure to stay with the group if and when my MG becomes well managed to try and repay the great help and support here. Thanks to all of you "veterans" who do that for us!!

Hi - if you are in the UK go to the UK support group Myaware - has a FB Page with a great forum and a web-site. There are regional get together soon and a special young persons division 18-25 year olds,

When you join Myaware (no cost but donations welcome!) you will be sent a Health Passport. Just like a normal passport this is where you may put all essential information such as meds, neurologist name & no, NHS No, Hospital No so no matter where you are your medical record can be accessed quickly & easily.

There is good info on the passport which also advises medics what not to do and to check the meds not to administer with a link to the Myaware web-site. I carry it in my bag or my person everywhere I go, I also use an ap which carries all that info on my phone,
http://myaware.org
FB Myaware - fighting Myasthenia together,

Other forums you might like on FB Women with Myasthenia (closed group - members worldwide but mainly American) Myasthenia Gravis - closed group and there is a site for those talking about using alternative treatments, the cutting out of sugar is a really good suggestion, it will not cure the Mg but it will help you cope with the meds as they are very tough on the digestive system. I cut out all wheat, no dairy, no added sugar, high plant content, only grass fed red meat occassionaly, no processed foods and eat only organic produce and wild fish. It makes a HUGE difference to energy levels and well-being generally.

You have to remember that the meds prescribed for Mg have side effects that are sometimes worse than the disease so do anything and everything you can to minimise the effects and keep yourself well, including exercising when you can but also getting out there and not allow Mg to rule you life.

I have found most people just don't know what to say or do as they really don't understand the disease and don't get I can be absolutely normal today and not able to get out of bed tomorrow, the most irritating thing people say to me is 'hope you get better soon'! Deep intake of breath........

PS - you absolutely DO get to choose exactly the doctor you want in the Uk -you have the right to be referred to whoever you want - the centres of excellence in the UK are JR inOxford, Liverpool, London & I think London.

I live in Devon but my GP is knowledgeable, my neuro is not Mg specialist but listens to me and is fantastic so I am happy with my treatment as well. I have also never met any one in the NHS who does not know about Mg - I met a trainee nurse the other day who said - ooo, we are just learning about that and wanted to talk to me about my experience. I have been asked to talk to my neuro's students about what it is like to help educate so all I can say is that so far, I have not come across anyone who has not lit up with delight when I say I have Myasthenia - because it is still quite rare and what doctor doesn't want to work with something unusual? I even get specialist treatment at the pharmacist,

Kallen 87,

I ordered a medic alert bracelet from the UK even though I am in the States. It is an SOS medic alert bracelet. You keep your medical information inside a little capsule on the bracelet. I think they may make necklaces, too. They look nice! And they keep your information private. I got a sterling silver one, but they make gold and stainless, too. I see that one of our televised shopping channels (QVC) has some SOS bracelets, too. Mine looks like a watch, I think, so it is not constantly reinforcing in my mind "You are not well!" I have not had it long but no one has even mentioned it, so I don't think it stands out as glaringly obvious. Additionally, the questions inside are in about 6 languages, so hopefully, wherever you go, medical personnel should recognize the information inside. Hope this will encourage you to check into getting some sort of medical ID. Keep your positive attitude!