What do you think
 

Sometimes I come across stuff like this. People saying to me "well my husband takes 5 mg prednison a day for over 10 years now for his MG, and he's working and all".

Or today, in my mailbox:

I do NOT find this encouraging or nice. I think, well good for him, but I must admit it is kind of hurting me a little, when you say "where there is a will there is a way".
I just don't see the added value of this... But maybe that's just me :)

A few years ago, a colleague of mine seeing me in a wheelchair with all my "gadgets" came over and said- forgive me for asking, but what is your illness?

I answered-Myasthenia Gravis. He looked puzzled and said-Are you sure? I thought MG was an illness you can fully recover from and lead a completely normal life with.

I answered- Did you ever have a patient who died from Hodgkin's disease?

He said-yes.

I said- But the majority of patients with Hodgkin's disease fully recover from their illness, so how is that?

He never bothered me with such questions again.

The point is that it may be true that most MG patients recover from their illness and can lead a normal life (or at least appear as if they do :rolleyes:) but unfortunately not all of them.

When people tell you about patients who recovered from MG when you weren't so lucky (yet), they can do it because they want to encourage you and give you hope (which is good and well-intentioned) , or because they are criticizing you for not "putting enough efforts" into getting better.

Some of them also have "good advise" such as-why don't you consult a leading expert, why don't you eat this or that, why don't you try A, B, C and D which really helped my cousin's daughter's best friend etc etc.

Most of those people know zilch about MG and even if they mean well, I admit that it can sometimes be quite annoying. Even though every now and then they do have good suggestions and sometimes even excellent ones.

I have learned to thank them politely for their interest, promise to look into what they suggest and even discuss it with my neurologist. And when they ask me why I see him and not someone "famous", I answer that he is the best and no one knows or understands MG as much as he does.

Or sometimes I say-I have a very rare type of MG, so it is probably different from what your cousin's daughter's best friend has. And if they insist I draw them a picture of the NMJ, and start explaining...That usually ends the conversation. :)

And no, I do not think that "positive thinking", "optimism" or "truly wanting to recover" (or as you say: "where there is a will there is a way") make a difference in your chance for recovery. I think those can help you adjust to your illness and have a better quality of life.

I also think that people who constantly tell you such things make it harder for you to adjust to your illness and have a negative impact on your quality of life.

You may want to look at this:

http://www.ncbi.nlm.nih.gov/pubmed/20146038

http://www.telegraph.co.uk/news/worl...ys-author.html

http://www.humansideofcancer.com/chapters.htm

Alice,
Do most people get better? I was under the impression that I can pretty much count on being stuck in a hole for the rest of my life. Better would be good.

Yes. Most people do get better and some even very much better :partytime2:

If ever a Mr´Doo Dah´s wonderful recovery has such a lot to do with his will power -
Then how on earth did Mr´Doo Dah´ever manage to´will´ himself into a disease in the first place?!!!!

:mf_swordfight::mf_swordfight:

People are well meaning but they sure can make you cross sometimes... :hissyfit:

Raven, I completely understand what you mean. There are many variables as to whether or not someone with MG improves. Some people like Jana and me cannot do more than Mestinon and have to "thrive" by giving up nearly everything we want to do and whittle our lives down to "some" of what we need to do.

Heck, we look "okay" so we must be okay. :mad: Even my good neurologist is guilty of that, up until I ask him to do a clinical exam. How many doctors come to the erroneous conclusion that their MG patients are okay simply by looking at them in a static situation after they've been sitting, resting their muscles?

Alice, I have to respectfully disagree. That is, unless you're being sarcastic, which is hard to tell this time.

First, there are no concrete studies of MG patients that show that most of them get better. I don't think people like Erin would say they are better (or are you, Erin? ;) ). Second, MG is a relatively progressive disease and there are long-term effects on the body due to that. Third, remission is most often drug-induced remission and not drug-free remission. Lastly, quality of life is not truly looked at in MG - until recently - and it often comes at the cost of side effects of drugs.

And then there are people who do get better - on drugs - only to be struck with cancer from those immunosuppressants.

I think hope is great but false hope is so damaging.

I'm not painting a gloomy picture, only a realistic one. Yes, positive thinking helps but it honestly doesn't change whether my arms will get weak typing this or my legs will get weak taking out the garbage.

After 54 years of having MG, I can honestly say that my quality of life is greatly diminished. I could do things when I was younger that I can't do now. Is that from the effect of aging on the immune system? My B12 deficiency back in 1997-99 making things worse (B12 is needed to make acetylcholine). Who knows. But I'm actually grateful that I didn't know I had MG until I was 41 because doctors might've thrown drugs at me that might've made my life worse or shorter. I'm glad I simply "adjusted" my physical self as much as I could. My MG was mild; now it's not.

There's no easy answer to this topic because there are NOT sufficient studies out there. And, at the end of the day, it only matters what each individual with MG thinks about their life and not how they compare their "better" to someone else's "better."

And if they did studies on how "we" are, would they include all of those undiagnosed MG patients? :cool:

Annie

You are right that most studies on MG are done by neurologists, whose ability to evaluate improvement is limited and also have their "wishful thinking" about their patients.

But still the overall impression I got from the medical literature and from patients I talked with is that most do have improvement in their illness with time.

I agree that this may be overestimated. And it is clearly not the "everyone can lead a normal life with minimal medications" notion prevalent in the medical community.

Regardless there are definitely patients who do not have improvement and some who have significant worsening in their condition. (although my neurologist thinks that even such patients may have significant improvement at a later stage, since it is such a crazy and unpredictable disease, but that's his "wishful thinking" not mine).


As you know, I fully agree with that. But, I do think that patients in the early stages of their illness can have realistic hope for improvement if not recovery.


As you know I am very concerned about the management of those patients and do my best to help them. I believe they have a different type of MG and therefore their illness is hard to diagnose and less likely to respond to the commonly used treatments. They do not have antibodies and they have a normal EMG and less typical clinical course because they have a different underlying mechanism of their disease and therefore their prognosis is probably also different. But, that's a different topic...

That's easy,

He just didn't pay attention for a little while. :Zzzz:

So, didn't exercise his will power.

But, now he is back in frame and ready to fight. :deadhorsebeat:

And since everything comes SO easily to him,

With just a little sense of humor -

He could even have turned this: :deadhorsebeat:

Into this:.............:sunchair:

Or maybe even this: :Dancing-Chilli: :Dancing-Chilli: :Dancing-Chilli:


If he really put his mind to it!!!!!

Oh! And since will power comes so easily to him...

He could also have:

Published one of these :Writting:

Starred on MTV :Head-Spin:

And gotten one of these :Clever:

All, just by thinking about it!

He has a lot of will power, but not that much imagination.

In fact he is a pretty boring, full of himself person.

The point I was trying to make was that without any scientific facts, no conclusions can be made. No one has studied ALL MGers, therefore, no one can conclude how we are all doing.

Studies won't help me finish my laundry.

All any of us can deal with is how we are doing at one moment in time. "What ifs" aren't helpful. And because MG is so unpredictable, someone can fluctuate from morning until night, day to day, month to month and teen to adult to senior.

Raven, I think many MG docs want to "fix" it. If they can't, they often blame the patient instead of coming to grips with how seriously stupid this disease is. The psychobabble they dump on women - sometimes men - has really got to stop. I know some men who can't even look at the blood from a small cut without getting squeamish.

Alice, I have known patients who have had MG antibodies and STILL get treated like they're nuts and are okay. So it's not only the seronegs who have a hard time. I have modulating antibodies and my history with neuros ticked me off so much I wrote a book about it.

Anacrusis, Honestly, I don't believe that controlling personalities can change. Most psychologists and psychiatrists don't either. If they admit they're wrong, they completely fall apart. And, unfortunately, a lot of doctors are left-brained, controlling personalities. See, I'm not in a goofy mood but you're illustrations were funny.

Unless they are about making a robot that can do it for you. ;)

But, I do get your point.

unfortunately very true.

It just makes it even more of a problem. Seems like the "box" is even smaller and tighter.

Raven

I hope you are having a good day today. There are many people here that understand what all that is like and that as well as figuring out how to deal with your symptoms you also have to figure out how to deal with other people as well which can be energy draining on reserves we sometimes don´t really have.

Good luck with that little extra work and if you ever need an extra supporter then I´m getting on that plane ASAP today!

Anacrusis :hug:

Thanks all again for posting :)
Today I had an awful day at a doctors appointment, it seems like my doc is just not getting what Im saying. Now I have to lower the prednisone dosage, without any substitutes... 1/4 down, just like that.
I do not believe it is a smart thing to do.... Im going to try 1/8 firs, see what happens. Im still weak but whatever. Atfter the appointment I was home, couldnt smile or talk normal for over 3 hours. And my eyes were droopy.
But, there is no harm is lowering the dosage, maybe even 1/2 down.
I don't get it, just don't get it.
Oh and I officially have diabetes caused by medicine now, so have to use insulinstuff. Grrrrreat.

Specially thanks to you anacrusis, made me smile (between my tears today).

Hey raven!!!!
 

:hug:SO SORRY TO HEAR YOU HAD A ROUGH DAY.........MY NEURO WANTS ME TO GO DOWN 1 MG PER MONTH (!) WHICH I FIND SLOW AS HECK, BUT SHE KNOWS MY MEDICAL HISTORY....

ALSO, TRULY SORRY TO HEAR ABOUT THE DIABETES. MG SUXX. NO OTHER WAY TO PUT IT.

MYNAME WAS ENTERED INTO THE CONVERSATION, SO I THOUGHT I'D RESPOND. NO IM NOT DOING BETTER. IM A "CHRONIC" CHRONIC - PER ALL OF MY DOCS - BEEN ALMOST 7 YEARS NOW. DO I HAVE HOPE? YEP! EVERY DAY! FAITH? PLENTY OF IT OR I WOULD HAVE GONE MAD! HAS MY LIFE CHANGED? YEPPERS!
I BLAME THE DRS FR NOT DX'ING ME YEARS AGO WHEN I HAD SYMPTOMS! I BEGGED FOR HELP. THEY TOLD ME I WAS "DEPRESSED"......SO WHEN I WAS FINALLY DX;ED MY FACE AND BREATHING WERE GONE AND HAD TO SPEND TIME IN THE ICU. HAD THYMECTOMY. TAKE STEROIDS. I GUESS I DIDN'T PITCH A BIG ENOUGH FIT. NO MORE. IF THEY DON'T LISTEN, THEY ARE GONE.

HOPE YOUR DAY GOES BETTER!
ERIN HERMES :hug:

I'm slowly, but steadily getting worse. I thought I was pretty stable for a couple of years. When I say stable -- I had exacerbations, but after they ended, I returned to the previous level of ability.

Now, I see a real decline. And I feel helpless. Like Annie said, we (she and I) do everything within our power to control this "beast". I CANNOT control the weather (triggers migraines which "whack" my MG) and I cannot stop the farmers in my area from spraying herbicides, pesticides, and fertilizers. I don't have the energy or where-with-all to move. :(

I know three people who have DIED from MG in recent years. People aren't supposed to die from this anymore, right????

Jana, I am sorry you are feeling worse. Has your doctor made any suggestions on changes in treatment? I know that coming to this site makes me feel emotionally better. The people here are the only ones I can talk to about this condition. I can not tell anyone at work. I know it would affect their opinion of me and how I am treated. Sad but true. I cannot tell my 14 year old daughter because I know it will frighten her and I do not even have a definite diagnosis yet. I am actually afraid of the official diagnosis because I do not know how to tell my daughter. I am a single parent.

I have 6 years before I could take an early retirement. I hope I can stay well enough to make that date so I can keep my health insurance. I wanted to retire to the shore. I will have to rethink that with how sick the summer weather makes me feel.

I live in a rural area too. Our house backs to woods. There is farmland only a half mile away. Do you think the farm chemicals worsen the MG, would a home air purifier help?
kathie

Thanks, Kathie. I tried IVIG and plasmapheresis and had HORRIBLE side effects. Doc agreed -- NO MORE!! Other current meds are not an option due to family history of cancer and my problem with steroid psychosis.

I cannot imagine having to keep MG a "secret". How stressful!!! Bless your heart!!

We know for sure that pesticides make MGers worse. They act on our muscle receptors. Personally, I have noticed that ALL chemicals make me feel worse. I'm now a fanatic about what comes into my house -- cleaners, personal care products, etc.

I religiously use air purifiers -- but, there is a limit to what they can do. :(

I want to move near the ocean, too. I cannot TELL you how much better I feel there.

The cartoons made my day - thank you! I have never laughed so hard - great therapy. I think we all should make grand rounds at Home Depot down the pesticide aisle. A few times up and down the aisles and everyone will know what the face of MG looks like ( if we don't have to get pushed in the shopping cart to the checkout line).

This thread is about YOU and you asked us all what we think and you got quite a lot for your money.

Here´s what I think........

I am going to visit you in a couple of months and make you smile once again :)

And then I´m not going to leave until I have made you laugh :Thats-Funneh::Head-Spin:

And all of that - without undermining the seriousness of this disease.................