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...
OK Andre...
I would never. knowingly, hi-jack someone else's post and seeing as you continually want to question (nothing wrong with that). Only to follow-up with your personal 'medical' opinions, loosely based on your own experiences, which I suspect are a mixture of fact and fantasy.
Let me take you to task on our more recent exchange: This in response to the suggestion I made that a younger patient with MG will likely be considered for surgery.
snip i had it a bit enlarged due to inflamation but my neuro got it pretty fast normal again.
and this was the big reason that i mentioned that when something is not broken, no need to fix it.
Try reading this first - Thymectomy
It's from a very reliable source, here in the UK. In fact, you would probably do well to read the rest of the information carried on the site.
You and indeed myself, are not young and as you will now know (having read the reference) our thymus is rather a poor reflection on what it was once - as are most other parts I expect?
This forum is not the place to be sowing the seeds of doubt into recently diagnosed MG patients. I appreciate that there might be some bad apples in the medical profession who don't have the foggiest idea what they are talking about, but that is hardly the way to approach an appointment with your neurologist.
I'm fairly confident that any neurologist seeing a new patient with suspected MG will be well aware of the process and from what I see and hear they usually get it right - some of the patients, however, are perhaps not quite so ready or receptive to what may lie ahead - I wonder why?
Cheers
Peter
So sorry the hear that (MG in your teens). But, I think you certainly qualify to have an informed opinion on the validity, indeed the efficacy of a thymectomy with respect to MG. - certainly in your own case. Obviously, a 'gamble' well worth taking. Such a shame that the positives didn't last even longer for you
Best
Peter
TJ
I was told after surgery that my thymus was large & growing up in to my neck.
When I thought I was coming out of remission I started searching the internet for anyone that may have that many years of remission. That is where I discovered there was a blood test. Ask my GP to run this test as I thought my remission was ending. Numbers were high so she ran them again & they were even higher.
I have been on cellcept now for 5 years. Started at 500mg. For the last 2 years at 3000mg. I’m originally from the Sacramento Valley,born & raised, but my husband & I moved to central Florida 5 years ago. As of this February I’m in a study for ARGX-113(efgartigimod) double-blind. Was told it is a very promising drug. At this time if it’s suppose to be great then I’m getting the placebo. At the end or 3rd phases of this I will get off label. That will be in July.
I , too, am in central Florida (Orlando)
Lisa
The blood test for Acetylcholine receptors antibodies. I didn’t realize at the time that some people could be negative & still have MG. I was positive. This test didn’t exist when I was diagnosed. The study I’m in is in Tampa. I was diagnosed at a University Hospital, so when moving here I chose a University thinking they would have the most current research over other neuro doctors.
Upon my diagnosis, my achr results were extremely , abnormally high. After my thymectomy, my results went even higher, , and the last time they were tested, my binding numbers were 1,270. After many appointments with my neurologist, and conversations with other MG specialists, they have repeatedly told me that the quantitative results are not reflective of the severity of MG symptoms. I have been symptom and medication free since my thymectomy 8 years ago, confirming their statements. But, I still worry and wonder why my numbers are so high.
I hope you can keep us updated as to how they study is progressing.
Lisa
Hey TMJ I'm glad your neuro-opthamologist is an MG specialist -- I wasted a few weeks with neuro-opthamologists while my MG rapidly progressed, so I am biased! I realize your case is a lot less severe than mine was. I read the study (abstract) and was happy to learn how well it went in the trial for people without thymomas (I had a huge thymoma -- 50 grams, or the weight of $2 in quarters). Previously it was thought that this surgery was better for younger women, but the study showed older men (over 40) also did better with a thymectomy than those on just drugs alone. I think you are on the right track -- but the thymectomy is a huge surgery. And the words of caution about "ectopic" thymus tissue (thymus tissue stuck in weird places in the chest cavity where surgeons don't look) made me worried that they didn't get all of mine out. Good luck and thanks for being such a great student of this disease! ~Joe FYI: This is the study he is referring to: Randomized Trial of Thymectomy in Myasthenia Gravis http://www.nejm.org/doi/full/10.1056/NEJMoa1602489#t=article