[alice md]

There are about 25,000 patients with MG in the USA.

According to the ( I agree with Annie,very limited) literature, about 1/3 will get significantly better, about 1/3 will stay the same (or get somewhat better) and about 1/3 will get worse. (in the past those would die, but now they are kept alive with the much better supportive and symptomatic care that we have got. Not because there is better treatment for the illness itself).

So 1/3-2/3 of the patients are overall content with the current management of MG and can lead a normal or near-normal life. They will never experience any significant breathing problems and will ( I could argue that some of them are over-treated, but that is a different issue or maybe not?).

1/3 have a severe debilitating and some even have a potentially life-endangering illness (this means that their life can be saved if they are given adequate respiratory support on time, which is fortunately what usually happens, but unfortunately not always).

So, in the USA alone there are about 8000 MG patients whose life has been significantly disrupted by this illness. ( you can do the math to see how many there are world-wide).

This is a very small number in a population of 300 million, but this is not a small absolute number. Each of those people has family, friends and co-workers who are effected by their illness.

Depending on the approach of their treating physicians and those patient's own preferences- Some of them will receive aggressive (and experimental) treatments, (such as would normally be given to patients with cancer, including stem cell transplants etc.), some of them will be told to seek psychiatric treatment, some of them will find innovative ways to live with their illness and some of them will possibly die. (yes, you can die from MG. Even the most optimistic reviews say there is about a 5% mortality rate in respiratory crisis and about 20% of MG patients will have a crisis during the course of their illness. so do the math. It is not zero).

Those statistics do not include "un-diagnosed" MG patients.
If we assume that about 5% of MG patients will have normal test results, and if we assume that about 90% of them will not be diagnosed as MG (I am basing this on a rough estimate that 1/10 neurologists are ready to diagnose MG without "objective" tests), then there should be about another 1000 MG patients whose illness is not properly managed (and not even properly diagnosed).

None of the 25,000 MG patients receive treatment which was adequately tested and was shown to be of benefit which outweighs the risk in similar patients.

I have given before the example of immune thrombocytopenia. (an autoimmune disease in my field of practice).
In the past (20 years ago) all the patients were treated with immunosupressive treatment.
We now know that some patients (with a mild disease) will never require treatment and the outcome of those who are treated is worse than that of those who are not, because both will do well, but those who are treated will have needless complications from the treatment itself.
Some patients require aggressive treatment from the very early stages of their illness.
Some patients will have a complete remission with a short course of steroids, but others will not do well when the dose is tapered. So, we now have ways to know who should be given steroids and who will require high doses for long periods and therefore will overall not benefit from this treatment.
Some patients will benefit from a surgical approach, whereas others will not and we choose the patients accordingly.
Some patients (a minority) will have a refractory disease and not respond to any of our commonly used treatments.
That is why we keep on doing clinical trials to find better management approaches for those patients.

None of this is being done in MG.

Why? there can be many explanations-it is much easier to check the number of platelets than assess a complex neurological disease like MG. Hematologists don't (normally) attribute their patient's lack of response to negative thoughts or not putting enough efforts. A low platelet count doesn't effect a person's functional abilities, so patients with ITP don't bother their physicians as much and mostly do lead a completely normal life in between exacerbations/ hospitalizations. Physicians taking care of patients with ITP have a much better understanding of the immune system because they also take care of patients with lymphoid malignancies.

But, the reasons don't matter.
There is no reasonable excuse for such a major difference between the management of one autoimmune disease to the management of another autoimmune disease. There is no reasonable explanation why over the last 20 years there have been major changes in the way ITP is managed and no such changes in MG. There is no reason why hematologists are still concerned about the small minority of refractory patients (and therefore conduct clinical trials to find better ways to manage their illness) and neurologists (even excellent ones) do not show similar concerns about their patients. There is no reason why hematologists are concerned about over-treating their patients and neurologists have no problem giving high doses of medications with significant side-effect profiles for extended periods.

I think it is time to stop asking "why?"

Annie is right. It doesn't really matter.

It's time to ask "what"

What can be done to change this.

I am sorry if I am annoying some people who prefer to think that MG is an ultra-rare disease, that there is already enough knowledge about it, that there is no place for further research and why should we care about those few people who have to struggle every day to do the most basic things and sometimes can't even breath.

This is a movie done by a group of patients with CFS.

I believe it had a significant impact. It did on me. It made me realize that CFS is not what I was told it is.



Patients can change the way their illness is viewed by the medical community and the media, patients can influence how much research will be done on their illness.

http://poultonblog.dailymail.co.uk/2...ge/5/#comments

We can't blame neurologists for being content with the way things are, when we as patients who receive such treatment are content with it.

The M.D. Anderson cancer center is going to put 3 billion dollars in finding better ways to treat different cancers in the next decade.
2 of them are in my field of practice, and there are already numerous clinical trials trying to do that world-wide.

What is the planned budget for such research on MG?

Dear Alice,
Thank you so much for this post.
Because really, I start doubting myself everyday.
Yes I am weak. Yes I can't even make it to the top of the stairs most times. And yes I have breathing difficulties everyday.

But still, the doctor (not neurologist) who saw me for an indication if I can have financial help, because I cant work, says: MG is a disease where your eyes get droopy. And it wil get better in a few years, and / or with simple treatment.
Neurologists I've seen, say it's not like it's a progressive disease. Or, you can hold your arms uo for almost 1 minute! Etc etc.

MG is, as far as I know, one of the only diseases (maybe the only one?) with such fluctuating symptoms. My experienxe told me that even experienced neurologist forget that sometimes. Maybe today I can hold my arms up, but yesterday I couldnt even scratch my ownnhead when it itched!

What I want to know, you say 1/3 has an illness that is disabilitating. Severe, disrupting our lifes.
Where I live (europe) they see MG as a disease thats soooo easy. On every website it days you can have a normal life with it. At least 90% has no problems whatsoever.
It makes living with it harder...because except my family who sees me day and night, no one knows how much symptoms i still have.

But what's your idea, to make a movie like CFS patients did?

[Anacrusis]

Originally Posted by alice md

This is a movie done by a group of patients with CFS.
I believe it had a significant impact. It did on me. It made me realize that CFS is not what I was told it is.

I just read this post.....

I was diagnosed with ME in 2009 and then left to my own devices for 2 years since I wasn´t interested in the only medical intervention that was offered to me and that was a theraputic cognitive program. - I have to admit I cried watching this clip as it´s very´close to home´.

Anyway - I am just writing to add a link here for anyone that may be interested:

http://www.tv2.no/nyheter/innenriks/...y-3615631.html

Thanks, Alice.

Anacrusis

[StephC]

I think if somehow the un-diagnosed (those who just deal with without complaining or who after complaining a few times were told it was nothing) and the mis-diagnosed (those who are told it is in their head and directed to seeek mental health treatment) could be identified and included in the patient group then MG patients wold be a more significant or relevant subject of study and create more interest? I happen to think combined total of mis- and un-diagnosed maybe twice the 1/3 number above. Not easy to identify and include (guess that starts with higher awareness) but these people do exist and if including them means doubling or tripling the target population, then I think worthy cause.


Perhaps also consider including the undiagnosed/misdiagnosed for all neuro-related illnesses (which just since the end of July I have personlly known at least 3 other professionals with serious neuro related illnesses struggling with similar types of issues as MG patients on here regarding the diagnosis/treatment). It seems to be trending towards more rather than less.

I am just brainstorming but I have said before I think the members of this forum are very intellegent and we are very fortunate that MG does not affect our cognitive abilities. As such I think we have the ability (and most on here already have via their many wise and thoughtful posts)to positively contribute to improving on the negatives of the situation.

and with that I hope everyone has a strong, comfortable Saturday evening :-) on a lighter note if you havent seen Bourne Legacy it has interesting neuro subplot and although not as good as the others was worth watching.

Stephanie

[alice md]

"But what's your idea, to make a movie like CFS patients did?"

Not a bad idea. But, how can we practically go about doing that?

[StephC]

My background is finance/economics/accounting before law and really isnt it all about the money? I do have some idea's but premature to blurt out - I think the 'idea' will take time to develop and evolve but I also think the process has been started just by 'planting the seeds' of things to ponder.

[alice md]

Perhaps also consider including the undiagnosed/misdiagnosed for all neuro-related illnesses (which just since the end of July I have personlly known at least 3 other professionals with serious neuro related illnesses struggling with similar types of issues as MG patients on here regarding the diagnosis/treatment). It seems to be trending towards more rather than less.

About 30-50% of patients seen in neurology clinics have "medically unexplained disease".

The DSM-5 has a new entity: functional neurological disorder.

The only criterion for this psychiatric diagnosis is that the patient's disabling neurological symptoms can not be explained by the current understanding and knowledge of the neurologist seeing him or the entire field of neurology.

I tried to write a letter to the editor of a neurology journal about it. This was the fastest "rejection letter" I have received. (within an hour!).

[hajile99]

Originally Posted by alice md

We can't blame neurologists for being content with the way things are, when we as patients who receive such treatment are content with it.

I think this is probably the key to everything you just discussed, Alice. As patients dealing with MG, as in any other disease, we are our best advocates. Simply being content with the existing treatment options and the lack of research done on MG does nothing but perpetuate and exacerbate the struggles we go through on a day-to-day basis. Not only do we, as patients, have to be our own advocates, but we need to create a greater awareness to the disease in order to further interest in the study of it.

I guess the real question, is how do you go about creating awareness? And how do you translate that awareness into further research and study of the disease?

[alice md]

Originally Posted by Anacrusis

I just read this post.....

I was diagnosed with ME in 2009 and then left to my own devices for 2 years since I wasn´t interested in the only medical intervention that was offered to me and that was a theraputic cognitive program. - I have to admit I cried watching this clip as it´s very´close to home´.

Anyway - I am just writing to add a link here for anyone that may be interested:

http://www.tv2.no/nyheter/innenriks/...y-3615631.html

Thanks, Alice.

Anacrusis

I believe that at least some ME patients have MG with normal "objective" tests.

I wonder if your ME was not the early stages of MG?

[StephC]

What is ME?