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...
I am always leery of treatments that are very profitable for clinics and hospitals. And IVIG is a huge profit center for those places that do it, at least in the USA. Does that make a difference in what your doctor prescribs for your treatment? Too often it may.
Most US medical centers are not different than other businesses in that they are in it to make money and that can mean we get the most profitable treatments for them rather than the best for us.
The folks for whom the drug based immune lowering drugs don't work are often stuck with IVIG or PLEX.
So the question you need to think about is your treatment plan based on your doctor's, hospital's and clinic's desire for profit?
I am giving information on IVIG, as it is a huge profit maker in the USA for everyone involved except insurance companies, Medicare and patients. We can get a hint of the level of profit by comparing Canadian at-cost levels versus US profit making levels.
"The mean per-patient cost of IVIG as a treatment for MG crisis/exacerbation was estimated at $6620 in Canada(including hospital costs, costs of blood products, and physician fees) and $90,760 in the US.
Corresponding estimates for PLEX were $4990 and $116,470, respectively.
Although the difference in cost between Canada $6620 and the US $90.760 is not all profit-taking, a great deal of it is-- all the way up the supply chain from IVIG manufacture, middlemen resale, and clinic/hospital/doctor profit.
And that is a great deal of money being made off our treatment and is the reason why I never assume that my treatments are not partially or maybe even totally driven by the profit motive. And so I am always skeptical of being told to continue a high cost (high profit) treatment vs a less costly one. The medical world, at least in the US, has a great share of greed included in its business model.
https://link.springer.com/article/10.1007/s40273-020-00912-8 Costs of MG treatment study - world wide review.
My experience in life is that very seldom are other people purely looking out for our own best interests, and so it is up to us to do it ourselves. My own medical care is through a non-profit where all of the doctors are on salary and treatment cost alternatives are presented to me before we make the decision. And even there, I don't assume that a new machine that needs 10 patients per day to be paid for is not coloring my tests or treatment plan.
Good Luck
Russ
I am sorry people do not understand what I post and some subject matter may be contrived as possibly conspiraital.
In any event we need to support one another. Let's not forget that. We are better than this.
I do mean what I say, but sometimes it can come off the wrong way. Sorry for that.
Best wishes for peace,
TJ
You're right on the nail with that comment! I suppose that in some ways I too can be taken the wrong way (tell me about it) I've been married long enough, far longer than I have 'known' my French friend on here!.. I certainly don't have any problems with what you say, but for me at least, I don't see any benefit in exploring some things said any further. I hope I don't offend having said that and it's fairly obvious that if I can't take the time to fully understand, I have no right to express an opinion - for once I wouldn't know what I was talking about. I try hard not to go there and to be fair to you I have absolutely no problem understanding everything else you say, you're right, we are here to support one another, difficult as that may be at times.
I think what I can say with 70 years of medical apponitments (I turn 74 in December) is that overall, my women doctors have been better. Not in their actual treatments, but their willingness to be open to a discussion of treatment vs just telling me exactly what to do.
I have goals in my treatments that include the least inconvenience possible (i.e. the least ongoing tests, visits, procedures etc). And so I want meds that don't require monthly returns, tests, etc.
I also want some leeway to titrate my own dosages -- i.e. mestinon, prednisone etc. I wanted the overall guidance of how to taper, but not necessarily an exact formula and the OK to increase or decrease some meds as needed.
And I found the women doctors were willing to explain and give me some leeway. Too often the men just abruptly said "do this and see me in a month." My woman neuro also let me use email directly to her when I was at my worst and responded within a day.
Maybe men expect to give orders and women are willing to negotiate for our personal needs?
Good Luck
Russ
Why not and no problem with that either. I actually have both, a male Professor for the MG and a rather nice and pretty female doctor for the IBS. I have also made a point of making sure that they both speak to one another as well, given that both conditions, for me at least, share exactly the same medication. The IBS Doctor is much more ready to prescribe Prednisolone and I really am wary, but it's early days with IBS and it is so unpleasant, MG is simply on another planet when it comes to recalling those early days, now of course much more under control, yet as we all know easily knocked off balance, with the likes of IBS and like I say I am very wary and we talk, my doctor and I.
I must be lucky I can email both of them and completely bypass the local medical practice to organise tests and appointments. Obviously a total different process over here in the UK, no accountants involved!
Men give orders and some men take offence at that, of course, perhaps that Army training came in handy after all?
I'm just a Pussy Cat Andre - should you be listening!
you are totaly right, WE ARE HERE TO SUPPORT EACH OTHER, and yes we are better that that
luck
Andre
i thank you for your input, it was very necesary to make people understand what i have said thru the years, in regard of woman doctors and attitudes of males in generals.
i am a male and i am not afraid to admit to facts.
maybe eyes will be open and people will be comming more forward in their choices of docs.
again thank you,
good luck
Andre
i was not going to dignify your last reply, but decided to do once more.
you just decided yo continue with your stupids inconsistencies in regard of my responses, the lastquestioning my elections of womans doctors over males, even Russ explained that they are willing to work and leasining with their patients,
even you admmited that you have a woman doc.. for you it must be a torture as a ex military man of more than 20yrs, in it for that long you must have adquire a tittle like seargant or better. that explain your chauvanistic attitude.
and refuse to see reality only yours.
that is why you are not and cant be a pussy cat
i just hope that you find in yourself to have control , and just agree or disagree, remeber that we all are here to support each other and share information
peace and good luck
Andre