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...
Would the "real" myasthenic please stand up!
Obviously, if you can't stand up, you don't have myasthenia.
No, this is not a cruel joke. This is what we are up against when we do not meet arbitrary criteria. I appreciate Russ's link to Mayo's hand book for the insight it provides into our difficulties.
Myasthenia gravis is a clinical diagnosis based on fatiguable weakness relieved by rest. Our histories are bolstered by exam and response to treatment and testing and until all the antibodies are known and all our examiners are skilled and we are tested under ideal conditions that testing will be flawed.
Of course it is helpful to have all the knowledge on hand about antibodies in an autoimmune disease, but physicians often have to work with the best information available, not complete understanding. The neuromuscular junction is so complex and the immunology of our disease is still being researched and complete understanding is certainly not what we have. When you define MG by known serology (positive blood tests), then you will pick up that segment of the clinical population. Not surprisingly that clinical population will be positive on the tests, most of the time
What we have on line are people in the throes of diagnostic dilemmas and treatment woes and failures, some are getting better. We have real patients not blood tests. Will everyone have MG? No. But everyone will need help and the few conditions that can be confused with MG are even less amenable to treatment and they will need even more help.
People who are in remission are welcome as long as they don't rub it in! :-) We appreciate success stories. They give us hope. But their experiences only go so far in helping those who are still struggling. After all there were spontaneous remissions before treatment was available. We certainly do not need to have anyone belittling the trials of the most vulnerable among us, those undiagnosed and those whose testing is negative so far, or making them feel unwelcome to be amongst people with "real MG."
What has been described clinically as MG is evidently a heterogenous group. In addition to those AChR positive, MuSK is known, LEMS is related, there are those with thymoma and those with other antibodies (and some with AChR antibodies picked up on testing not commercially available) and better understanding may someday make definitions and treatment more specific. We want irrefutable scientific evidence, but we may not have the luxury of waiting for it. Death and disability is not acceptable when there is good clinical evidence for MG and there are treatment options. We need to be able to stand up!
Hang in there, b.
Obviously, if you can't stand up, you don't have myasthenia.
No, this is not a cruel joke. This is what we are up against when we do not meet arbitrary criteria. I appreciate Russ's link to Mayo's hand book for the insight it provides into our difficulties.
Myasthenia gravis is a clinical diagnosis based on fatiguable weakness relieved by rest. Our histories are bolstered by exam and response to treatment and testing and until all the antibodies are known and all our examiners are skilled and we are tested under ideal conditions that testing will be flawed.
Of course it is helpful to have all the knowledge on hand about antibodies in an autoimmune disease, but physicians often have to work with the best information available, not complete understanding. The neuromuscular junction is so complex and the immunology of our disease is still being researched and complete understanding is certainly not what we have. When you define MG by known serology (positive blood tests), then you will pick up that segment of the clinical population. Not surprisingly that clinical population will be positive on the tests, most of the time
What we have on line are people in the throes of diagnostic dilemmas and treatment woes and failures, some are getting better. We have real patients not blood tests. Will everyone have MG? No. But everyone will need help and the few conditions that can be confused with MG are even less amenable to treatment and they will need even more help.
People who are in remission are welcome as long as they don't rub it in! :-) We appreciate success stories. They give us hope. But their experiences only go so far in helping those who are still struggling. After all there were spontaneous remissions before treatment was available. We certainly do not need to have anyone belittling the trials of the most vulnerable among us, those undiagnosed and those whose testing is negative so far, or making them feel unwelcome to be amongst people with "real MG."
What has been described clinically as MG is evidently a heterogenous group. In addition to those AChR positive, MuSK is known, LEMS is related, there are those with thymoma and those with other antibodies (and some with AChR antibodies picked up on testing not commercially available) and better understanding may someday make definitions and treatment more specific. We want irrefutable scientific evidence, but we may not have the luxury of waiting for it. Death and disability is not acceptable when there is good clinical evidence for MG and there are treatment options. We need to be able to stand up!
Hang in there, b.
Neuro #3 (a teaching physician at the U) told me that he viewed Myasthenia as a collection of syndromes but that he would, based on my aunt's seropositive case of MG and based on my response to treatment, eventually run the blood tests again. While Mestinon and methylprednisolone have made me better than I was in late 2012, I am still far from anything resembling remission. While I am fortunate that my neuro is open minded and exceptionally bright, the lack of data has prevented my getting treatment that might make me more functional. I feel incredibly confident in his clinical diagnosis (though obviously very sad to have MG), and my heart breaks for and my ire is ignited for those who cannot get the help they need.
Love you all, DS family. XOXO
PS (My doctor is confident enough in his powers of clinical observation to have initiated the paperwork to have me register my medical details with the MDA. Receiving that paperwork in the mail was sobering indeed.)
I am lucky (?) enough to be seropositive, have been through a remission, and have now come back full circle. I feel terrible for all that are going through the difficult diagnostic process. Even though I am seropositive, I find that I am questioned from every direction about the validity of my symptoms, as in re-testing, my levels are no longer as high as they were when first diagnosed 20 years ago. We all know symptom severity and antibody levels don't necessarily correlate. I can assure them, my symptoms are very real! As many have said before, I wish they could spend a day or two in my body!
I am so thankful to have all of my DS family! You all brighten my day!
Linda
I wish I could take you, your wealth of knowledge and your well researched views to all of my appointments with me,! This whole experience makes me so nervous around doctors and I literally just want to get out of there when I am in a consultation for fear of the dreaded dismissal.....which does not help me to articulate what I need to! I feel on trial and like I have to prove myself and my symptoms every time despite an indisputable and very visible facial droop! I really hate it and would love to never see another Doctor or test again!! I have now been referred for a second opinion to a Neuromuscular Specialist 90 miles away and if I'm honest - I am just dreading it! :(
Thanks again for this...and all of your posts.x
Please dont give up- those here struggling for answers.
So many other ways to diagnose folks now and because of this get them help. Some of the labs still not available yet but still most Mg specialist can use the SFEMG and other tools /treatment responses available to diagnose and treat.
I wish there were more of these docs around though. So many dont get the timely diagnosis and help they need and suffer needlessly. We do see that too often here. Some wait years for diagnosis. That's so unnecessary and frustrating!
Dr. Ted Burns did some great pod cast that folks can listen to on this very thing. It's on the MGFA web site:)
I am grateful for having had him diagnose me.
One of my favorite statements of his."If someone presents as a MG case and responds to the treatments for MG, it just seems cruel not allow them the treatment.
I do pray everyone here gets the treatment they need and deserve- soon.
The majority of folks with seropositive MG seem to get relief from the standard treatments (if they can tolerate them) according to all accounts I have seen and from what my neuro tells me.
Maybe it is that seropositive MG is really a quite different beast than seronegative MG--and requires a different treatment altogether, and deserves its own special name. My "gut feeling" is that those on this forum with the most intransigent problems are also seronegative for the current testing. I think I would be dissatisfied with a diagnosis if the treatment didn't work.
I hope I don't cross any lines when I discuss how my treatment worked. I only say it to give the hope that treatments can help. I live each day knowing more severe symptoms could come back any day.
It just concerns me so when there are new people not getting treatment. It scares me so.
I went through hell and I wish I would have had this group early on.
I am grateful for people who returned to this group who were in remission because it gave me the strength to go on in a positive way.
I certainly hope non of my comments were interpreted as belittling. That would never be my intent.
Ann
Everyones story and journey is helpful to hear.
It's funny how it seems some people though have a personal issue about others not following their advise,pathe or way of thinking sometimes.
This is a support group and bullying and judgements about others health and what they should think or do because it's different from you, is not supportive.
I am sero neg. I do respond to the traditional MG treatments of mestinon, IVIG, Plex, cellcept. Many of the sero negative folks here do too- once able to be diagnosed.
On the same hand. I know some sero posative folks here who dont respond so well to traditional MG treatments. They too strugle for years to find the right treatment.
It is not an unusal problem unfortunatly.
This is why we need to be able to talk freely here with out fears of what os happening with us is right and wrong. There is no cure for MG and no one single treatment for all.
Be kind please.
Note: I am AChR positive with malignant thymoma. I was diagnosed quickly and easily. That being said, I do not respond well to current medicstions available and the doctors have tried many to keep me alive. Cellcept. Imuran, tacrolimus, rituximab, prednisone, IVIG, daily plasmapheresis. I'm lucky I have doctors that aren't afraid of a diagnosis and will try it all...with my blessing. Am I worth the time and expense? You bet! Are each of us worth the time and expense? You bet!
-sherry
--Kerry
I totally agree with you. For me each neuro's visit has been done with trepidation ,particularly ,as you all know,he stated I had "superwoman syndrome" without an examination. Then there was the third who said I should go to America if I wanted treatment.
I must have been on the defensive when the last said 'we are not blaming you' lol
Lorraine
It was plain and simple, I was extremely fatigued and got better with rest. Sometimes it takes a day or two but then I am able to get up. My first neuro looked at me like I was an annoyance when he had really critical patients in his waiting room.
My 2nd neuro put me on Mestinon immediately after 1 and 1/2 hours of symptom details and an exam. He told me even if the other tests come back negative he knows I'm positive. I guard the mestinon pills like my life depends on it, and it does. I have a hard time waiting for the next dose because I want to feel better.
So once again a big thank you and hug for keeping my spirits up. And to the rest of the friends I have met here, a big mahalo (Hawaiian thanks)!
Mary