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...
Although I am 14 months into remission from achr positive MG, I still keep up with the latest research, having spent most of my life in medical research before retiring.
The Neurology Journal of the American Medical Association publishes the abstracts to research papers at the website
http://archneur.jamanetwork.com/solr/searchresults.aspx?q=myasthenia%20gravis&fd_JournalID=72&f_JournalDisplayName=JAMA%20Neurology&SearchSourceType=24
Included there is an article that discusses further testing of seronegative MG patients found 50% had identifiable clustered AChR-Abs that correlated with emg findings.
They say "We recently developed a sensitive cell-based immunofluorescence assay that can detect AChR-Abs in approximately 60% of patients" with seronegative generalized MG.
So, maybe a new blood test will pick up more of the seronegatives and make diagnosis easier.
The search of the website I listed has several seronegative studies listed -- all attempting to pin down antibodies related to MG in that population. There is hope for better tests coming.
The Neurology Journal of the American Medical Association publishes the abstracts to research papers at the website
http://archneur.jamanetwork.com/solr/searchresults.aspx?q=myasthenia%20gravis&fd_JournalID=72&f_JournalDisplayName=JAMA%20Neurology&SearchSourceType=24
Included there is an article that discusses further testing of seronegative MG patients found 50% had identifiable clustered AChR-Abs that correlated with emg findings.
They say "We recently developed a sensitive cell-based immunofluorescence assay that can detect AChR-Abs in approximately 60% of patients" with seronegative generalized MG.
So, maybe a new blood test will pick up more of the seronegatives and make diagnosis easier.
The search of the website I listed has several seronegative studies listed -- all attempting to pin down antibodies related to MG in that population. There is hope for better tests coming.
There is indeed hope!!
Are you Russ Hanson?
So Rhanson, I don't know to which you are referring and I cannot access the information without paying for it. There is a bunch of articles on that site. This is your first post ever with that ID in DS - MG and you come in speaking of remission. Wow! Congrats! So happy to hear you are in remission. Are you taking any medications or are you drug free? What steps have you taken?
Peace,
TJ
Here is the Links Group news about these tests from several years ago:
http://www.dailystrength.org/groups/myasthenia-gravis-links-and-news/discussions/messages/14067745
That particular ACHr test and the LRP4 test have been around for years, just not commercially available in this country. I know that the LRP4 test is being trialed here, but they are not taking out of state participants.
It is discouraging that these tests are taking so long to reach us, but when Mayo and Cleveland give out statistics like 95% of people with MG are positive with their tests and more with MuSK, and the rest expected to revert positive in a year of NO treatment or be picked up with SFEMG, there just seems no reason for a private company to spend money getting these on market. It also doesn't help that these institutions question the clinical validity of these tests--some of these more recent papers continue to put those questions to rest. Perhaps those two institutions do make the diagnosis on clinical grounds without positive studies, but rarely. Treatment of seronegative people with MG is still reluctant and the authors' response to the letter in the Cleveland Journal makes it clear that the doctors are essentially asking their patients to make decisions on even first line medications. Promising new treatments and participation in studies are often denied to those unfortunate enough to have one of the rare antibodies. Of course if these patients are rejected outright, we do not know how rare they are. I hope the MGFA registry will help and that patients and family will enlist the MGFA and MDA in making clear that many of us are not getting treatment we need due to lack of testing, some of which is already available. There is certainly hope, but it may take a push from those of us who have the least time and energy and are getting the poorest treatment. Fortunately for me, I am not getting poor treatment, but the diagnosis process took more than 40 years.
Anyone of us can Google "myasthenia gravis," although as you point out, some of the scientific papers require subscriptions or trips to the library to read more than the abstracts. We have been fortunate to have Gwynn as a resource, when we have questions. Medical research involves more than graduation from G (Google ) and W (Wikipedia) University, although much can be learned, as you and most of us know. Some of it certainly needs to be interpreted by or filtered through our doctors. A BS degree from a small midwestern college and 27 years in a GI motility lab do not qualify as expertise in myasthenia. I wish spontaneous and/or prednisone induced remission were possible for all of us and have not appreciated Russ's comments in the past that suggest those who do not respond are responsible for their own difficulties. b.
Most of my message was "in tongue and cheek" to Russ, a person that had his ID banned from here for a reason...He decided to "stir up the pot" again I see.
Be well everyone
Glad you guys picked up on this.
That was when I was symptomatic. Now the new me is Rhanson, where MG is a fading memory --but of course could return anytime.
I think prednisone did me a favor by messing with my memory so I actually don't remember much of the bad part of MG back in summer of 2012. I saved all my posts and blogged endlessly and boringly about the symptoms, treatment, and the "ride" so can review it if I have any urge to or need to review it should remission end.
It is much easier for those of us who get a quick antibody positive diagnosis; respond to treatment as predicted and get control and move on with drug maintained remission of the worst symptoms. My neuro assures me the vast majority of her patients do move through it in an overall pattern and do move into control.
So that leaves the conundrum of those who do not; those who do not ever get the positive antibodies, and the uncertainty of what that means.
For those without clear test results, doctors are always second guessing the diagnosis as do the patients themselves when treatments fail. And when treatments for a disease do fail, then it is reasonable to second guess the diagnosis. And maybe it is reasonable to distinguish it as a different disease.
Sometimes MG is just the side effect of another problem -- like cancer of the thymus and possibly even when the immune system overdoes the attack on other invaders or conditions.
( http://www.medscape.com/viewarticle/807276 says late onset MG is "linked" to cancers of various types. So maybe an MG diagnosis means a thorough cancer check is necessary (as Lambert Eaton myasthenic disease is indicative of an underlying cancer).
My own disease is achr antibody positive myasthenia gravis (AAPMG) by my own definition. I would not expect that antibody negative myasthenia gravis would automatically respond to the same treatment as antibody positive MG any more than I would expect treatment for triple negative breast cancer to work for triple positive breast cancer.
So, from my point of view, when people disagree with the statistics on MG quoted by places like the Mayo Clinic, the problem arises from variations of the disease being classed together rather than being viewed as distinct diseases with similar symptoms. Those who end up antibody positive are those with what we could call "standard MG" and those who don't surely are a variation that needs to be de-clumped from the stats ;-)
Do we really think breast cancer is one disease? Only if we want to be superficial. Same with MG when defined by symptoms rather than by the detailed biology of cause.
http://www.jwatch.org/na34865/2014/06/17/expanding-list-autoantibodies-myasthenia-gravis
The Expanding List of Autoantibodies in Myasthenia Gravis
Michael Benatar, MD, MS, PhD reviewing Gasperi C et al. Neurology 2014 May 2.
Agrin joins the acetylcholine receptor, MuSK, and LRP4 on the expanding list of antigenic targets in autoimmune myasthenia gravis.
The spectrum of autoantibodies present in patients with acquired autoimmune myasthenia gravis (MG) has expanded significantly in the last decade. The nicotinic acetylcholine receptor (nAChR) is the most frequent (and well-known) antigenic target of the autoimmune response in MG, followed by antibodies directed against muscle-specific tyrosine kinase (MuSK).
A small proportion of double (nAChR and MuSK) seronegative patients possess antibodies that target low-density lipoprotein receptor-related protein 4 (LRP4). Building on the observation that MG can be caused by autoantibodies that directly bind to the nAChR or to proteins (MuSK and LRP4) that mediate nAChR aggregation at the neuromuscular junction, investigators have now sought evidence of antibodies that target agrin, which binds to LRP4 to activate MuSK and nAChR aggregation.
Among 54 MG patients (9 nAChR antibody positive, 15 MuSK antibody positive, and 30 double seronegative), the researchers identified agrin antibodies in 5. All 5 patients with agrin antibodies were already known to possess antibodies against one of the other known autoantigens.
The observation that patients with autoimmune MG may have antibodies against agrin is intriguing for several reasons. First, agrin is a critical mediator of AChR clustering at the neuromuscular junction. Second, mutations in agrin have been identified as a rare genetic cause of congenital myasthenia. However, the pathogenic role of agrin antibodies is, as yet, unclear. Moreover, the diagnostic value of these antibodies is similarly unclear, given that they were never identified as the sole autoantibody in the myasthenia sera studied. Nevertheless, the increasing array of autoantibodies in MG and the observation that low-affinity antibodies (mostly against nAChR), which are not detectable using the standard radioimmunoassay technique, can be detected using a cell-based assay will elevate the importance of serology in the clinical diagnosis of MG, once these newer assays become clinically available.
I chose to remove my account after getting tired of a lot of nonsense that passed for advice on this forum and on Dailystrength from the top down.
I am a firm believer in peer-reviewed science and evidence based medicine, and that is not often welcome here-- the internet and its approach to medicine, including the Big Wizard himself push for questionable products and gullibility is the key to most people's understanding of cures.
See the Wizard trying to explain fooling the Dorothies of this world http://www.salon.com/2014/06/17/watch_dr_oz_attempt_to_defend_his_weight_loss_miracles_before_congress/
I am back only when it is raining out or the mosquitoes are too bad here in NW Wisconsin to be outside working. Newcomers to this forum (as I was in the summer of 2012) read the dreadful posts of suffering and treatments not working and get a badly out of balance view of MG and the "normal" prognosis of a decent future.