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
this blog as going behind anythinh you ahve done up today and i am very tired of your getting in my back at every poest response.
you have done this since the beginning on which you enquired about comming to the states, as i have explain so did others what uou would expect of our system.
since then you have flip- flop on me at every post,you have insulted me, denigrate me and my posts responses , explanations, suggeestion, reaquests, and other, try to make me look bad, unknolegable,irresponsable, deciving to newer log coomers ect.
I AM FED UP WITH YOUR ATTITUDE IT IS NOT AN ATTITUDE DIGNIFIES OF A OLDERR PERSON, WHICH WHANT TO BE REPONSABLE, HONEST IN HIS BLOGS. AND RESPONSABLE TO HIS PEER NOT TO CAUSE ANIMOSITY BEETWEN BLOGGERS
all my reponses to question, suggestions and others, where allways honest, clear and concise, never have i tried to decive anybody, all as an mg, patient where given from all my experiences, reseach and all what i could find in benefit of all of us.
and not as you pitefully express, ARE FROM THRUTH AND FANTASY. so far from the thruth you are,
just remember the statment you tru in may face y have 20years and more of military life and give me the right to my sayings
CAN YOY TELL ME WHAT KIND OF STUPID COMMENT IS THAT, WHAT YOUR MILITRY LIFE AS TO DO IN ALL THAT???
ALSO, WELL IT MUST BE MY IRISH BLOOD, THIS IS THE EXCUSE YOU USE WHEN YOU INSULT PEOPLE??? HOW LOW CAN YOU GET.
my life and my experiences are to precious to me and maybe on helping someone else to go thru the laberint of mg, to continuosly leesing to your stupid insinuations,
SO I WILL ASK AGAIN TO RESFRAIN YOUR SELF FROM ANY UNCIVILISE WORDING THAT YOU MAY HAVE, WHEN YOU READ MYS RESPONSE TO OUR PEERS, OR SIMPLY DONT BOTHER TO WRITE THEM
HOPE THA YOU UNDERSTAND THIS TIME AND COOPERATE
Andre
There are very specific people who it helps which doctors DO NOT tell you. Read the study carefully if you are considering a thymectomy. See if you fall into one of those categories. Personally they tout it as you will be cured when the vast majority don’t get cured and they also risk their future health by removing an organ involved in immunity. .
And in the next few years much better targeted treatments will be available that will likely render this argument a moot point.
I’m not saying don’t get one but make sure your doctor explains who is helped and the long term consequence.
People here have gotten them being antibody negative which in my opinion is unethical at least on the doctors part. Only helps those acetylcholine positive not MUSK or any other category including no antibodies. Several other categories doesn't help either.
Do your homework and don’t base your decision on anything Posted on a message board.
We do our fellow MG group members no help when we attack each other. We also do them no good when we give advice that is our opinion and state it as fact. When I give a suggestion, I prefer to give it with a link to a research study that I read to form my view and explain it that way.. Or I can say, I did this and this is what happened to me.
Thymectomy was controversial in folks with normal thymus glands for years with mostly anecdotal examples of improvement. So various groups around the world studied it and the results are consistent that it helps some folks.
So, if a person comes here and asks the question - Should I have a thymectomy-- our best answer is to give a link like this one https://www.myaware.org/thymectomy-information-sheet
Would I personally have a thymectomy? I would read up on the benefits based on the research studies. Then I I would try to find out if a person of my age has the thymus removed would cause problems. Something like this
The thymus is located just below the breast bone. It is relatively large in infants and grows until puberty. In adulthood, it starts to slowly shrink and become replaced by fat, according to the National Institute of Neurological Disorders and Stroke. It can weigh only 5 grams in elderly adults.
As it grows smaller, it seems the organ becomes less important. "Removal of the organ in the adult has little effect, but when the thymus is removed in the newborn, T-cells in the blood and lymphoid tissue are depleted, and failure of the immune system causes a gradual, fatal wasting disease," according to Encyclopedia Britannica.
Remember we are here to help others in gently answering their questions, giving them hope and trying to hold their hands rather than prescribing their medicine. We might say "it took me a few months on 60mg of prednisone to get MG under control" rather than saying "you need to take more prednisone. Or "I chose not to have a thymectomy because...." versus "don't get a thymectomy."
Dogmatism has as its root a dog!
Be nice
Russ
Needless to say, I never had a thymectomy - it was discussed and the relevant X-Rays were taken but there wasn't any perceived value to what was then a 65 year old. However, that's all there is to my story, it doesn't mean that I am in a position to offer advice to anyone else and certainly not someone in their late twenties or early thirties. One could equally say the same for every other treatment I've had over the years - I might be wiser, but it hasn't made me a doctor!
Peter
You guys be nice you want people to have them because they are not your bodies being cut open.
I too would be more likely to listen to you if you pointed to some research that actually agrees with what you say. Otherwise we just have your opinion that says somebody somewhere sometimes said something that you believe, We also need to be convinced by the source of the information-- to make sure it is not just a shill for a book, supplement, or other money-making scheme for the proponent.
I searched to find out more, but everything I found said the same thing-- that as we age the thymus shrinks until it finally is just some fatty tissue left. My own thymus scan showed the same thing, and my neuro joked that having a thymectomy at my age would be like having liposuction!
My personal opinion, based on my reading is that if I were younger and my MG treatment was not working or my side effects were bad, I would likely consider it if my insurance company and my doctor agreed that I should have it and I was achr+. My insurance company is always first on the list, because I can't afford to do most of these treatments without coverage, If they are convinced it is likely to help enough to fund it, I think it probably has been exhaustively studied and found to be helpful before they will shell out the dollars for me! Insurance companies are not all bad!
The best kind of advice is by example, I think. What we know is our own path through MG, and sometimes the insights we have are helpful to others. Otherwise pointing them to the myasthenia organizations is probably a safe and sane direction.
When I was taking Mestinon at high doses, the advice I got here was valuable as folks had the same side effects and and figured out how to cope with digestive upset, cramps, etc. I ran the suggestions past my neuro and she was sort of bothered as she thought she had already told me that (but either she hadn't or like happens sometimes in the doctor's office we get information overload).
We are not here to win over converts to our personal view of how to live. We are a case of one, and no one in their right mind would take one example as the rule for all.
Russ
lets undrestand one major fact, and i thank philomena50 for completly open up this subject.
WE ARE NOT GUINEA PIG TO JUST PUT OUR LIFES IN THE HANDS OF DOCTORS JUST BECAUSE THEY ARE THERE,
IT IS LOGICAL THAT WE ASK ALL QUESTIONS, THE NET IS GREAT FOR THE FACILITY OF FINDING FACTS, BUT ALSO WE NEED FEED-BACK FROM DOCTORS
I HAVE EXPLAINED WHEN I GOT MG, THAT MY NEURO DISCOVERED MY THYMUS GLAND WAS INFLAMED, SO I WAS INFORMED THAT THEY WHERE 2 PRECIGES DONE TO CORRECT.
ONE: OPERATION THIS IS DONE WHEN THE GLANDE HAS A TUMOR, NO DISCUTION IN THIS REGARD
TWO: IN CASE OF INFLAMATION THEY ARE ALTERNATIVES WHICH I WAS PUT ON
I WAS INFORMED THAT THE GLAND HAS THE VERY IMPORTANT FACTOR WHICH IS PROTECTING THE RESPIRATORY SYSTEM FROM COLLAPSING.
AND WHEN, I ALMOST DIED FROM THAT SITUATION, I BELEIVE THAT IF MY GLAND WAS REMOVED I WOULD BE DEAD TODAY
AND BELEIVE ME THANK TO MY NEURO (A FEMALE DOCTOR) WHICH IS A LIFETIME BETTER THAN A MALE, SINCE THEY WILL LESSING TO WHATEVER YOU TELL THEM AND YOU WILL BE SURE THAT THEY LESSING.
MALES DOCTORS HAVE THE TENDENCY TO IGNORE MOST OF COMPLAINTS AND DO AS THEY WISH
TJIS IS WHY THERE IS SO MUCH ARGUMENTS IN MOST RESPECTS.
DO NOT FORGET WE ARE THE ONES WHOM HAVE THE DESEASE, AND EVERY POST ARE BASES ON FACTS THAT HAPPEN TO EACH OF US, SO WE SHOULD BE UNDERSTANDING AND TAKE IT THE RIGHT WAY
THE ONLY THING THAT I DO NOT LIKE IS WHEN SOMEBODY ADVISE TO UP THE MEDS, THIS SHOOULD BE DONE BETWEEN THE PATIENT AND THE DOCTOR ONLY.
BY DOING THAT YOU MAYPUT SOMEONE IS SERIOUS RISK
BEST TO ALL ANDRE
I can not understand why someone would not choose to get a thymectomy if it meant what I consider a good chance of improvement/remission, versus taking toxic, side effect inducing medications the rest of their life. Would they not wonder if it might have helped?
Yes I know everyone is different, but I am generalizing when I am giving my opinions, talking about the average MG patient.
Yes, I had a thymectomy, and yes I have been symptom and medication free ever since my surgery. I look at it as 8 years of me not taking any medications and dealing with symptoms. I know it can change at any time and I now have 8 more years of MG “knowledge”, and will be better informed if my symptoms come back (compared to being shell shocked and totally ignorant about MG at original diagnosis)
CT scans of the thymus are not known to be accurate. Many people discover after their thymectomy that their thymus ended up being larger than the CT scan showed it to be Neurologists who base thymectomy surgery decisions solely on a CT scan should be questioned on their MG knowledge.
Peter and Russ, thank you for your input.
My doctor, a neuromuscular specialist, has another seronegative female patient who is older than I am and who was refractory to all immunosuppressant treatments. My doctor and this patient decided on a thymectomy. Now, a year later, the patient's MG symptoms are considerably improved. Apparently some of us supposed seronegatives are AChR+, but the tests commercially available in the US don't pick up low affinity antibodies. My physician said that the more accurate test is available in England.
I just had an appointment with my physician, and she was encouraging about my prospects for symptom improvement now that I have reached the 2 year post-thymectomy mark. Meanwhile I am being maintained on 10mgs of prednisone per day, 100mgs azathioprine/Imuran per day, and lots of Mestinon/ pyridostiomine along with plasmapheresis/ PLEX (for which my insurance pays, no problem).
https://www.verywellhealth.com/thymus-gland-overview-4582270
Certainly, for me, very informative and easy to read. In part, I have to admit to being prompted by the constant reference by my French friend that the Thymus gland has a very important function in protecting the respiratory system from collapsing... By implication, one could assume that removal of the thymus would lead to a premature end. Even I can appreciate that would be a step too far, even as a trade-off to improve the lot of someone with MG!
Bottom line is that I can't find any reference to this anywhere - perhaps Andre would care to comment? CAPS NOT REQUIRED!
An interesting article to read. I found this about MG in it:
"Another common reason for this surgery is for a person with thymic cancer. In addition, myasthenia gravis (MG) is another condition treated with a thymectomy. When the thymus gland is removed, roughly 85 percent of people with myasthenia gravis improve and 35 percent achieved remission.
However, it can take months to years for these effects to be apparent with myasthenia gravis. When used for MG, surgery is usually done between puberty and middle age to avoid the potential consequences of removing the thymus gland earlier in life."
As removing the thymus gives a very good outcome for MG improvement, we are led to think that MG is the result of a defective thymus for many people. Some defective thymus glands are enlarged or have cancer and are removed because of the obvious abnormality seen in scans. I don't know of any other test that says one has a defective thymus.
Possibly the test that a young person has ACHR+ MG may be the one that indicates a bad thymus, as why else would most MG folks do better without it?
The thymus, as I understand, makes the blueprint for some of our antibodies that are manufactured elsewhere. So removing it would not necessarily stop the production of the bad antibodies immediately, but it may be that with the blueprint lost with the thymus removal, the production gradually attenuates -- the long time it takes to see remission after thymectomy. I don't understand the process well enough to know if that is a reasonable idea.
I have little problem with removing with removing a defective gland that is causing MG as living or dying with MG is not so great. I suppose the best research would be to look at those people 50 years after their thymectomy.
My own generation in the US is the appendix and tonsil removed group, glands removed for minor reasons sometimes. We seem to be functioning into old age too with little difference between those of us like me, whole, and my brother who had the surgeries, although I have MG and he doesn't. A good study would be too compare the health in old age of the two groups. One such study examined the long term quality of life and found that was improved after tonsillectomy. The quality of life is as important as the length of it in my opinion.
Thanks for the interesting article. Philosophically we come to the question, why are we programmed to age and die? My understanding of our human life is that most of our genetics are the result of evolution where we passed on our genes for a million years ages 15-30 and so what evolved is to make those years prime for survival. Possibly our teeth giving way far too early was not enough to favor child-bearing folks and so our cells are programmed to shut down and get us out of the way ;-)
Thanks
Russ
That the thymus may yet prove to be the ageing time-clock is rather clever. Perhaps in that, we do have the means to find agreement with those on here who would curtail the medical profession? In this case to prolong our lives to the point that they become unbearable for us - for rather longer than we would perhaps want - given the choice?
TJ from CA