Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi everyone - I just wanted to say a huge thank you for all of your replies and thoughts/research on my other post :)
After seeing all of your comments and reading Beth's Inspirational Letter.....and everyone's stories week after week it makes me so mad and so sad to see so many people struggling with the same problem....negative tests, struggles for diagnosis and lack of treatment.
It makes me want to do something to highlight the struggles many of us on here face, or have faced, in getting a diagnosis and ultimately treatment? I wish there was a way to put pressure on the powers that be (whoever they are!) I wish we could rally other forums and their member to make a big bold stand or a collective statement, I wish we could reach the Neurologists, the Researchers and Boards/Organisations that make the diagnostic rules!
However....I know how the world works and that patients without a formal diagnosis or a shakey Clinical Diagnosis' probably don't carry much weight and they would very quickly be thrown into the "Psychological" basket (!)...and I also know that we are all ill and running on limited energies and have barely got the energy for ourselves and our loved ones let alone taking on another battle on top of this illness! And so the real world knocks me off my high horse (lol!) and back into frustration at being at the mercy of the current criteria with no way to change/help things!
I suppose Its just hard reading people going through the same struggles day after day and there being no answer or end in sight?? I wish the people that made the rules....or even the "Specialists" in MG read this forum and could see how many lives this affects and that the disease that makes us "weak" actually has so many amazingly "Strong" people (who are far from crazy!) all battling through with very little help/treatment/support!
I think you are all amazing and inspirational.....and you keep me going through the moments where I just want to give up and never see another bloody Doctor or Test EVER again!!!!
Thank you all.....I hope that all of our wishes come true one day :) x
After seeing all of your comments and reading Beth's Inspirational Letter.....and everyone's stories week after week it makes me so mad and so sad to see so many people struggling with the same problem....negative tests, struggles for diagnosis and lack of treatment.
It makes me want to do something to highlight the struggles many of us on here face, or have faced, in getting a diagnosis and ultimately treatment? I wish there was a way to put pressure on the powers that be (whoever they are!) I wish we could rally other forums and their member to make a big bold stand or a collective statement, I wish we could reach the Neurologists, the Researchers and Boards/Organisations that make the diagnostic rules!
However....I know how the world works and that patients without a formal diagnosis or a shakey Clinical Diagnosis' probably don't carry much weight and they would very quickly be thrown into the "Psychological" basket (!)...and I also know that we are all ill and running on limited energies and have barely got the energy for ourselves and our loved ones let alone taking on another battle on top of this illness! And so the real world knocks me off my high horse (lol!) and back into frustration at being at the mercy of the current criteria with no way to change/help things!
I suppose Its just hard reading people going through the same struggles day after day and there being no answer or end in sight?? I wish the people that made the rules....or even the "Specialists" in MG read this forum and could see how many lives this affects and that the disease that makes us "weak" actually has so many amazingly "Strong" people (who are far from crazy!) all battling through with very little help/treatment/support!
I think you are all amazing and inspirational.....and you keep me going through the moments where I just want to give up and never see another bloody Doctor or Test EVER again!!!!
Thank you all.....I hope that all of our wishes come true one day :) x
I am back to working on MG awareness. There is another Belk Charity Sale. My husband and I raised $263 by selling tickets and working the day of the last sale.
Thank you for posting this.
Barbel - Great job in raising money!!
Barb - Your situation is particularly difficult to hear about. My heart goes out to you hun, as I know how debilitating your form of MG is.
Hugs to all of you!
Angie