How do you cope?
 

Hello all! Hoping this post finds you strong and happy! :hug:

I have been dealing with mg since March 6,2006 yet still wonder how exactly to COPE with it.

All of us remember how strong we were, pre mg. How we could take on anything (it felt at least)........

I have very blessed in certain areas. My hubby still loves me. My family is healthy and happy. I am still a wreck.

I know I should be grateful I'm still here with my family, but feel cheated, cheated by my body.

Granted, I am much stronger now. I can walk, talk, breathe. I still miss the old me.

I do know that a lot of us will go into remission. That is what I am praying for daily.

How do you cope with the emotions that having a chronic illness bring?

Erin

Hi Erin,

You have been through a lot ... and for a long time, too. And you have been such a great support to so many folks here over the years.

There is no good or comforting answer to your question other than you cope as best you can. You allow yourself to acknowledge every different emotion you experience as being real - - and validate your right to have those emotions - - don't deny them. In many ways, they are your release valve. Try hard to let the negative emotions go for the time being after you have acknowledged them...but be prepared to acknowledge them again as necessary.

Having a chronic illness (at least to me) is a bit like growing old (which I am also doing rapidly!). Things change - sometimes fast, sometimes slowly - but you look back and realize I can't do what I once did...and I want to. The best alternative ...really the only alternative for me...is to do what I can, when I can, at a pace I can. And if I really can't do something I used to do (like for me it would be competitive show jumping horses), I did do it...and I have the memories...and that (unfortunately) will have to suffice.

As my mother aged into her 80's, I remember one day she looked in the mirror and looked at me and said 'Who is that?' pointing at the mirror. I was a bit shocked and scared thinking she was having a stroke or something!! 'What do you mean?' I said. I will always remember her response.

She said that she was trapped in that 'old body', but inside she felt like she did years before.

I think most of us learn to live with our "new" body/life. For me, it's been easier to deal with because I already went through a "grieving" process when our youngest was born with Down syndrome. Those first few months were awful, and the next couple of years were tentative - we just didn't know how everything was going to turn out. It's been 11 years now (next week!), and things have settled down.

Everything has turned out to be just fine. We've learned to be more patient, and we've learned to celebrate the tiniest (and most important) things. Most importantly, though, we've learned that we are strong enough to handle whatever life may throw our way. We've learned that there are lots of things that we have no control over - all we can do is equip ourselves to handle situations as they arise. And we know that everything will be OK in the end - things may not turn out the way that we had hoped or planned, but we've learned to make the best of any situation.

I think that those of us who actually have a diagnosis are - in a way - the lucky ones. We have a "name" for our illness, and we can give ourselves permission to take it easy. If we didn't know what was wrong with us, we'd still be pushing ourselves and just getting tireder in the process.

The good thing is that MG does appear to "progress" rather slowly, even after diagnosis. Yes, it sucks to have this condition, but whenever I start to feel sorry for myself, I remind myself that it could be a whole lot worse. I look around and I see people every day with cancer, Lou Gehrig's disease, or some other illness that carries a possible death sentence. I see people who have been paralyzed, had a traumatic brain injury, or whose loved ones - including their children - have died.

When I look at all of the things that I DON'T have, I am reminded that - all things considered - it could be much, much worse. That doesn't mean that I don't have days when I throw myself a great big pity party - I definitely do! I rail against the limitations that my body has placed on me, and I lament all of the things that I planned on doing. And I mourn the fact that I will - realistically - never get to do those things.

Then, I make a list of all of the things that I AM still able to do. My mind still works, and thanks to the Internet, I am able to stay in touch with the world. I can still "talk" to people, even if I never have a chance to meet them in real life. I am able to spend time with my family - and as much as I feel guilty for not being able to do as many things with my kids and my husband as I used to, the fact of the matter is that they would rather have me here with them; they are all glad that I am still around.

I try not to be a burden to them, and I try to be understanding whenever they get frustrated by the extra workload that they have to shoulder because I am unable to do the things that I used to do. Lord knows, they didn't sign up for this any more than I did. But we love each other, and that's the most important thing of all.

I talk to God a lot - I know that not everyone is a believer, but I find great comfort in my faith. I wonder why I was tasked with this particular "cross", but then I am reminded of the story of the man who wanted to "trade" crosses, only to find that his was the smallest one in the room.

One of the things that having a chronic illness like MG does is it gives you the opportunity to stop and smell the roses. I've figured out that one of the reasons that our elders are so wise is precisely because their bodies have "forced" them to be still - much like ours have. You have lots of time to THINK when you can't do anything else....

So for me, I'm using this time to become a wise old lady - it's what I always wanted to be "when I grow up".

We've been given the gift of discovering what is truly important in life. Not everyone is that fortunate.

Prayer.....faith that God knows what is best for me. I also take VERY good care of myself.

I dunno, Erin, it seems that attitude plays an important role in how one copes with a chronic disorder/disease. I've always thought YOUR attitude is one of the best I've seen. I'm pretty much an optimist -- every cloud has a silver lining. :)

Wow! What great responses!
 

Thank you, all of you for you wonderful replies! :grouphug:
I, too, rely on lots and lots of prayers! Think my faith is probably the only thing that has kept me sane throughout this ordeal!
Only God knows why on earth we have this. Only he can cure me.
No it is not fun and no I am not happy about having it, but I can help my attitude and the way I perceive things and the way I treat others.
It has been a long, hard road.
There is a light @ the end of the tunnel!
Love,
Erin:grouphug:

and validate your right to have those emotions ..........

[QUOTE=suev;894484]


Hi Erin!

Nice to meet you :) A while back I read some old posts round here including some of yours and thought to myself, ´She´s an amazing lady with an amazing life´

I really like the responses you got on your post…..maybe there could be a permanent ´sticky´ called ´How do you cope?´ at the top of the page..

Here´s how I cope.......

Not too long ago I lost most of my grasping, pulling, stretching and lifting ability. It got to the point where my hands could type one sentence only, and I stopped reading as I couldn´t turn the pages of a book. My husband ended up changing all the bedsheets for 4 years and doing most of the housework and cooking, and he still loves me too!!!!!

I spent my days being occupied with making the most elaborate day to day survival strategies for my own progressive symptoms and I also spent lots of time solving my friends emotional and practical problems in between fluctuations.

But all that cognitive processing alone unfortunately wasn´t enough. I did not, like suev is saying, ´validate my right to have any emotions´ during the whole of my experience – especially the negative ones. I felt like my body cheated me and it cheated everyone else too…....my husband out of a good wife, my child out of a good mother, and my employer out of a good worker.

I think all along I´ve managed to look around the obstacles in my life and it seems that there is always a blessing in disguise when I´ve really looked hard enough. A sense of humor has also helped me (at times!)

How I cope now is through the actual process of writing....vast amounts of it!!! Scrawled A4 sheets of paper all over the place, and most likely incomprehensible to most!
But in the end for me writing as a process is precisely what helps me cope.



All the best to you and I look forward to read about how you are doing in the near future.

Anacrusis

One more thing, Erin - you may not realize it, but in coming here and sharing your experiences over the years as you have, and giving others encouragement like you always do, you have provided hope to so many of us (especially when we first start out on this journey).

We've seen your struggles, and those of others on this forum. Through each of you, we've learned what works for some people, we've seen you get knocked down by this crummy disease, and yet each of you manages somehow to get back up (even if it's only figuratively), dust yourself off, and keep muddling through.

That gives the rest of us an incentive to not give up.

You may not realize it, but that is an incredible gift to give to other people when they think that all hope is lost.

We see that, and we think to ourselves, "Well, if they can do it, so can I."

You have been able to point people in the right direction to get the help that they need, and by doing so, you have given them the strength to keep fighting.

And a couple of years down the road, when somebody new comes along who has just gotten a new diagnosis, then not only are the "old-timers" able to help them out, but the "in-betweeners" who were helped out a couple of years earlier are ALSO able to help out. And they wouldn't be able to do that were it not for you being there for them.

You may never know just how many people you have helped, either through words of advice, or praying for them when they are going through a trying time, or just by still being here (it's a HUGE relief to know that people live with this disease for years and aren't dropping like flies!).

You may not think that you are "doing" much because of your physical limitations.

But the fact is, you do so much simply by giving the rest of us support whenever we need it.

And I'd be willing to bet that the people who actually see you every day feel the same way - your contribution may not be anything tangible, but oftentimes it is the intangibles that stick with people the longest.

I think I was only really depressed once so far (I've had it for about 2 years) over the fact that it's making work very difficult for me... mainly because they don't understand. It's hard to say "my eyes are bothering me" and have off 5 days until my vision goes back to normal, than 2 weeks later get sick (non MG Related) and need more days off. When you don't look sick on the outside it's hard for others to understand. Also since I can't drive (and don't have a boyfriend or anything, hard to find one who is understanding about a major medical condition!) I have to rely on my mom to drive me to places and things and I'm 25 years old. But because my eyes are effected a lot, and I'm tired a lot (not always alert enough to drive) I don't drive. I also (for now) can't live on my own because I can't afford it (and then the problem of how do I get to places comes in again). Honestly, if I could afford it, I'd be in the city right now because I am very much a city girl and my transportation problems would be solved easy peasy.

I've talked to my mom about it, and we've brought it up to my doctor a few times. I'm still relatively "new" at this I guess since I've been effected for 2 years but only been diagnosed for a year now, that all the pieces are still falling together for how to do things. It helps that my parents are understanding (especially my mom, she worked in the medical field and has thyroid & diabetes, so she knows how it is to feel like total crap), and that aren't quick to kick me out or anything like that.

Otherwise, I just keep going through my daily life but add more resting in between. I still go out with friends when I can, and I still travel, I just make sure I maybe add an extra day of rest, and extra resting time within those traveling days so I don't wear myself out completely.

Overall though, I know I have it a lot easier than some MG and other illness patience, so I try to tell myself "this could be MUCH worse, you can deal with this". My best friend has Lupus, I saw her for the first time since she's been diagnosed (a year now) and man...she absolutely has it worse than me...

You hit the nail on the head about "looking" just fine - it's hard for others to understand how sick we are, and there is absolutely no way to describe it in a way that those who don't have it can fully appreciate.

It's good that you have supportive parents - speaking as a mom, I know that they want to make sure that you are taken care of. You might be able to qualify for some government disability services, which might make it easier for you to get around. It's a tough call - being at home means that there will be someone around to keep an eye on you and make sure that you don't hit a crisis.

I think it must be harder to get this diagnosis when you are younger - you want to be able to get out and do everything that everyone else your age is doing, but your body betrays you. It sounds like you have a good attitude, and that is so important - :hug:

Working with the devlopmentally disabled has taugh me alot about my disease.
 

I work full time with the devlopmentally disabled I also have a husband that is very visually disabled. When I see these young people at work in wheel chairs and they are really stuck in their bodies they cannot move , some are very much with it and it is amazing to me that they come in with smiles are their faces . I have one favorite and he is an amazing young man., his body is a wreck , really can't move anything his arms very little, but he comes in and makes me laugh every day and I make him laugh. At first when I got this disease I was hysterical , I was always a person with lots of stamina., now ugh!!!!! I get angry because I am 60 but feel 80., I have just developed rhumetoid arthritis also. Erin, you were one of the first people on this board that amazed me., how you cope and what you went thru...you were an inspiration and always will be. I just wish more people would understand you don't have to look like hell in order to feel like hell. But sometimes even my own family forgets. I guess we take one day at a time and keep pushing., I know it is hard for me to work full time, but I need to work too more years to get a small pension., but that is better than none. :grouphug:

I know this is an older post, but I wanted to respond to it because I've been through so many misdiagnoses, doctors who kept telling me my issues were minor, and doctor who didn't even believe I was sick that I think my experience has been a little different than the average MG patient and I don't know if it might help anyone in a similar situation.

While my condition has gotten gradually worse, I can't remember a time when I was pain free. Initially, I attributed the pain to sports, then when I couldn't play and things kept getting worse, I started realizing that something was wrong. My senior year of high school are when things really started to get bad, and then in college they got worse. But I think this is when the Myasthenia began as I started having eye trouble at this point.

Anyway, to make a long story short (I could write a novel), about three years ago I was DX'd with impinged hips, but that didn't explain all the neuro type symptoms going on (this was after about five years of being told my trouble walking and my back pain was a minor arthritic problem, and not being believed when I told them it was something different). At this point I stopped going to my current neuro, as he labeled me "under control" as far as he was concerned.

About this point, I finally realized that the doctors either had no clue what was wrong with me or really didn't think anything was that wrong. I also realized that whatever I had would probably kill me before I was 35, based on how fast my health was going downhill. This bothered me for several weeks, until I realized that death was better than how I'd been living and that I wasn't magically going to get better as my symptoms were getting worse.

Somehow, coming to terms with this actually helped me emotionally. I, honestly, haven't really been upset about my illness since then until I found out my cousin may be going through the same thing.

At about the same point, my father and my orthopedic realized that my problems were probably more neuro than ortho and encouraged me to see a neurologist (well, my dad encouraged me, but there's only so much he could do...my orthopedic said he wouldn't fix my hips without the okay from a neuro).

I decided I wasn't going back to the guy who kept telling me I'm fine (even though he's known as the best in the city), and he wouldn't let me switch to his younger partner who was a neuromuscular expert, so I called a new practice took first available. He recognized the MG right away, but cleared me for surgery and told me to come back later (which was really dumb). I stopped breathing during the surgery, then he wouldn't treat the MG until I had more surgery. I switched neuros at that point.

Things at this point at least stabilized, but the pain never got better, nor did my walking despite the hip surgery. In the last month, I've discovered this is from Stiff Man Syndrome and I've actually been much better than before. I'm still in pain, but not as much as before and I can walk again.

I've actually gone on a bit of a buying spree the past couple of weeks as I didn't really tend to think past my immediate needs, plus I had to give up photography as a hobby as I wasn't able to walk. Besides a new gaming computer, and a good pair of headphones (which actually hurt to use until recently), I haven't really spent any money and wasn't able to travel. I did waste money on half a dozen ergonomic chairs and mattress pads that never helped.

Anyway, getting the MG and the SMS under control has actually made me realize that I can, hopefully, live a somewhat normal life. I understand that most people here are devastated by their loss of functioning as it typically happens over a quick period and I try to be sensitive to that. However, I feel like I've had a bit of the opposite effect. Three years ago, I thought I was dying, and whats worse is that I was okay with it. If I hadn't been diagnosed with MG and now SMS, I'm not sure where I would be, or what condition I would currently be in.

I guess my point is this...don't give up. If you think something is wrong, it probably is and there is probably an answer somewhere. In my case, the same news that I realize everyone else is having trouble dealing with has probably saved my life. In the state of mind I was in a few years ago, however, being told I had ALS and would be dead in three years would probably also have been welcomed news. Knowing whats wrong and being able to deal with it is better than giving up because everyone says you're perfectly fine when you know you aren't.

Erin,

I too am late in responding to your post. I also am dealing with both MG and Stiff Person Syndrom (SPS) but have only been fighting this battle for 3 years which after reading so many post from people who have dealt with the symptoms of MG for years with no diagnosis is a blessing (I guess).

I am very angry that these illnesses have taken my life from me. I've lost the ability to work, lost a job that I had for 13+ years and I have no chance of recovery. I have always been very independent, going where and when I wanted. My husband of 32 years didn't have to worry about me, take time away from his job to care for me and add stress to both our lives.

I would hope if I only had MG and had the prospect of a recovery or remission, I would have so much hope that I would get my life back or at least most of it. However, being diagnosed with SPS there is nothing in my future but drugs to help me make it through the day (day after day after day). And those drugs have a greater potential of causing other problems and have already done so. I take prednisone which has contributed to my newest diagnosis of osteoprososis.

Anyway, I've had to learn to take it day to day and be thankful that I can get around if only at my house. My big outing is the grocery store once a week. I can do some housework (which I HATE) instead of playing in the dirt outside in our yard (which I LOVED). My life has totally changed in a blink of an eye and is now out of my control. But like you said, I have a wonderful husband that has battled with me, a wonderful friend that has also been with me every step of the way and a family that understand (as best as they can) about what my life is now.

Just be thankful for the small things you have. I hope you get your life back as soon as possible.

Becky
Southern Bell
:grouphug:

I wanted to add to what you said about looking just fine. When I was sitting at my desk, I'd be weak and in pain, but people would say, "oh you look so good today." I wouldn't know how to respond. Do I tell them how I really feel or do I just say "Thanks" and let them think I'm doing better?

Also..at least in my experience, its not only harder to deal with the diagnosis when you are young, but its harder to actually get the diagnosis. The doctor looks at you and thinks you're young and just fine. They had me seeing psychiatrists because they didn't think I was really in as much pain as I claimed.

They had you see psychiatrists because your illness didn't fit any box that they knew. It had nothing to do with your age, gender, level of education or even your behavior. It had nothing to do with you. It was their way of dealing with their own frustration.

Had they actually made a diagnosis that fit the symptoms, I would agree. Instead, I was first told I needed a psych eval before I could go back to the University practice. I have a feeling that something was written in my chart at that point because it was a long time before my pain was taken seriously. When that didn't pan out because I didn't want group therapy for loneliness (as they thought that was the source of my "pain"), they then they sent me to a neuro-psychiatrist who completely missed the neuro symptoms and told me I was depressed--of course I was, but there was a reason for it. When my eyes got so bad I could no longer read, they did send me to a neuro-ophthalmology, but he completely missed the MG, told me it was just muscle spasms and gave me dilating drops. The learning needs center told me that as I wasn't technically blind, I had to wait until everyone who was blind go their books on tape before I could receive mine, which meant that the semester would be 1/2 - 3/4 over before I'd get my text books and I had to drop out of classes.

When my pain doctor first saw me, he told me he didn't know what I had, and that he could only treat the symptoms, but he was appalled by the treatment I'd received and I needed to give up on community doctors and be seen by a university center.

Sorry, I'm not trying to be disrespectful, but I've spent about 15 years trying to prove to doctors that whatever is going on is neither in my head, or a minor case of arthritis. Unfortunately, I no longer see the doctors to whom I needed to prove this, except that I credit this stubbornness with keeping me alive this long while I've had undiagnosed stiff person syndrome.

I'll get off my soap box now. :winky:

That was exactly the point I was trying to make. You have two rare diseases, so quite likely they have never seen someone like you. Your illness did not fit their knowledge and experience, so therefore it did not exist.
Psychiatric problems, on the other hand, can be as bizarre as you like. There are no criteria to make this diagnosis other than that you have troubling symptoms (which obviously you do if you are seeking medical help) and the ignorance of the physician you consult.

http://www.dsm5.org/proposedrevision...ion.aspx?rid=8

My personal opinion is that you are very fortunate that you no longer have to see them.

I actually realized two things overnight. One is the point you were trying to make, which you did clarify for me. Thanks :)

The other is that in a way they did send me to many of the right doctors--they didn't send me to a normal psychiatrist, they sent me to one that was board certified in neurology. They also sent me to a neuro-opthamologist. And on my own I found a neurologist near DC. All these doctors just missed the actual problem. The neurologist probably got the closest by realizing it wasn't in my head, but said it was arthritis and I should be seeing a rheumatologist. At that point he pretty much followed me as a formality.

I actually saw two rheumatologist. One said I was lucky and it was muscular--but didn't tell me where to go from there. I guess she was right except for the lucky part. The other, unfortunately, said it was ankylosing spondylitis--which then took 5 years to prove that there were no changes in my spine.

Also, as I think back, one of the things that may have led them to believe it was in my head was that when I first sought medical attention, I hadn't slept for six or seven nights due to the pain. In addition to sending me to a psychologist, they started me on a steady stream of codeine. At the time I thought it was because I was in a lot of pain...I found out later that the medical center just handed out T3 like candy because it takes care of most ailments that people in college complain of (colds, sprained ankles, etc).

I think that once you have a "waste basket" diagnosis you can throw everything into, it is very convenient, as you no longer have to think about this patient.

This can be extremely dangerous and harmful (and in fact it is).

I am not saying that there are no true psychiatric problems (even though I do think there is significant over-diagnosis, because there is a very large spectrum of normal, so how do you define abnormal?), but that there is no place for a diagnosis which is merely based on lack of knowledge and ignorance (of the specific physician, the entire field or even the entire profession).

I think physicians should avoid using this diagnosis (despite its convenience) and patients should be aware of its existence. (so that they know:1. It doesn't mean that there is something emotionally wrong with them, 2. It may be the lack of knowledge/experience of a specific physician, specific field and others may have the answer).

This diagnosis is "survival of the fittest". Only those who are assertive enough, have the determination, knowledge, ability and support required can survive it. I don't think it has a place in modern medicine.

I am sorry that you had to go through this. I am glad that you eventually found those physicians who treat you properly.

Would it not be difficult for ptosis to be caused by psychiatric issues? Neurological abnormalities that can be documented may be made worse by stress, but there has to be more than just a case of the crazies.

While it is very frustrating to finally "get" a diagnosis of MG, we must remember that only 600 new cases are diagnosed in the US each year - in a country of over 300 million, it's not hard to understand why even the best doctors sometimes miss it.

It's a subtle and slow-acting disease in most cases - by the time we realize there IS a problem, we've probably had the disease for over 10 years; it can take many more years for a doctor to check off all of the boxes of what it ISN'T before they (possibly) think "MG".

Doctors are human, just like the rest of us, and they will usually only see any given patient for 30 minutes to 1 hour each year - it's hard to know what's really going on in a person's life when you aren't living in their body day in and day out.

Thankfully, we have forums like this where we can talk with other people who are going through the same things that we are and who understand what we are talking about!

I agree that its not the first thing doctors think of when people come in with the type of complaints we have. Add to this that I was on TNF blockers which were masking some symptoms and I became harder to diagnose. My current neuro thinks they have value in treating MG and wanted to use me as a test case to see if traditional MG meds + TNF blockers would make a bigger difference, but wasn't able to get it approved.

The problem I had with the neurologist I'd been seeing for so long went beyond that, though. He couldn't believe he had missed the MG for five years and questioned the diagnosis. When I didn't want to go back to the doctor who used surgery as a diagnostic tool, I was told by my primary to make an appointment with the neuromuscular expert from the practice I'd originally gone to. After doing so, I got a call back that I was a patient of the senior partner and he doesn't share patients, so they rescheduled with him.

When I came back in, he told me he didn't trust the test results from the other doctor, that he wanted me off all MG meds for six weeks, then would redo the EMG, SFEMG, and blood tests. Despite the fact that the meds were helping I did this, but then had a conflict on the testing day. When the confirmation call came for the test, I pressed the button to cancel. When I didn't show up at the test, I got an angry phone call from the practice and was told I'd be charged as no-show. When I said I canceled on the confirmation call and needed to reschedule, they told me that they noticed I cancelled, but its an important test so they put me back on the schedule. I told them that they never notified me of this so I was not a no-show. To save me from typing the entire argument, I'm persona non grata at
the entire practice now (at least until my neuro there retires). Unfortunately its one of those big practices that are gobbling up all the smaller practices, so there aren't many neuros near me that I can actually see.

I'm probably better off anyway as my current neuro looked at the tests, accepted them at face value and just did her own strength testing to confirm the diagnosis. Plus she's an MG expert and her husband does MG research.

First, the incidence of MG is 5/100,000, so there should be 15,000 patients diagnosed in the US.
Second, physicians are expected to be able to diagnose rare disease such as MG, mostly that every medical student learns about it extensively. (even though what is written in the medical text-books about this illness is very simplistic and far from what it really is).
In fact most physicians (or even medical students) would put MG very high in their list when presented with a patient with unilateral ptosis or changing muscle weakness. The problem is not that physicians don't think about it, but that they rapidly dismiss this thought.
In most cases it is not subtle. Patient go from being able to run to hardly being able to walk within weeks to months. Although, some patients may have a very mild form of this illness and possibly this can go unnoticed for many years.
Doctors (and even very good doctors) can make mistakes, but they can't and should not be allowed to humiliate their patients just because they don't know what is wrong with them; They can't and should not be allowed to cause patients lose their confidence in themselves; They can't and should not be allowed to jeopardize their patient's care by other physicians. If they don't know they should keep on thinking, keep on consulting others, keep on listening their patients for new and subtle clues. If they don't have time to do that, they should find another profession.

I recently attended a meeting of multiple myeloma patients (A disease as rare as MG, which may present with orthopedic complaints). This group of patients was not only concerned about the management of their illness, but also with improving the awareness of orthopedic surgeons to this disease. I never saw such kind of interest in MG patient groups.
There are studies which show that the chance for remission in MG is highly dependent on starting treatment within a year of the first symptoms. So, delaying the diagnosis and sending people to seek "psychiatric" help can lead to significantly decreasing their chances to be "by the book" and be able to lead a completely normal life.

Although, some patients will have respiratory symptoms as the first manifestation of the disease, for most those appear much later in its course. So, possibly starting treatment with relatively mild symptoms could prevent respiratory crises. Have you seen any study looking at that? I haven't.

The respiratory crisis of pneumonia belongs to history books. The respiratory crisis of myasthenia is unpredictable, not clearly defined and almost mystical.

It's very nice to have other patients with whom you can talk about. Yet, myasthenia is a serious and potentially life-threatening disease and it is much more important (in my opinion) to have a competent and knowledgeable physician to talk with.

When I see in the official MGFA clinical overview for health professionals that:

I think of the next patient who is going to have atypical symptoms, a normal SFEMG (according to some studies this can be in up to half the patients with non-AchR MG). I think of how this patient is going to be dismissed, labeled as suffering from "emotional problems" until he/she has a respiratory crisis (which may also not be enough to convince the physicians that she is truly ill).

This has all been described in Chloe Atkin's book and has been the fate of many other patients who did not survive this ordeal. People who's life has been shattered not only by this illness (which one can learn to live with) but by those who were supposed to help.

Ways to improve diagnosis
 

Why don't we all try to figure out a way to improve physician awareness, diagnosis of MG so hopefully others don't have to get to point of being so bad and perhaps in the process create methods, ways to improve our own treatment as well.

Sorry for my last post, I realized I rambled a bit too much. Anyway, this is exactly what happened to me. They told me loneliness and depression can cause physical pain and symptoms of weakness. And I would tell them that the reason I'm lonely and depressed is that its hard to get out when you are in pain and can't move.

Then when they finally decided it was serious, they DX'd it as ankylosing spondylitis, which takes years to confirm as they need to compair x-rays taken each year. After about two years I started to realize I didn't fit AS, but with each new complaint the rheumitologist would say something like, "of course you have trouble keeping your eyes open, arthritis causes fatigue." It wasn't until I couldn't physically open my eyes that they started to realize it wasn't actually fatigue, but a muscle issue. And as previously mentioned, the neuro I was seeing was no help.

Hi StephC

Hope you are having a good day. Those are great intentions :)

Internet

I think we all do our bit by writing here. I certainly know from personal experience that without the use of internet I would without any doubt not be having an upcoming referral for an SFEMG or been on a Mestinon trial. In fact it is very likely I would have continued to believe the doctor who insisted myasthenic muscle weakness was psychosomatic and the neurologist who said I needed to use my muscles a little more and everything would be just fine. Internet research has made me more daring to stand up for myself in the face of closed minded medical professionals. Do I think I will ever change their thinking? I´m certainly doing my bit and writing some kind but informative letters which probably won´t change any doctor´s dismissive attitude for the better - but at least I´ve actually done something.

MG Forums

Posting on forums is not my favorite way of communicating, nevertheless, every time anyone posts on an MG forum they are doing their little bit. I deliberately posted a while back about an unusual myasthenic reaction to sedatives, because I found no similar information on the internet (except with responses to antibiotics) and felt in a way it was my duty! Someone somewhere may be gathering valuable data from something on this or any other MG forum as we speak. Today´s medical students are younger – they know where to find the best information!

Media

Wasn´t it Sugarkiss who suggested a documentary? (it´s that kind of alternative thinking that is followed through that sometimes gets the biggest result – great idea Ms. Sugarkiss!) How about getting a Michael J Fox type figure on board? What about also including a broad focus on how this is so much a snowflake disease. Or a ´Myasthenic Mystery´ because it ´hides´ itself so cleverly.
At the moment, nothing is funny about having a serious disease but there are some comical elements which can lighten the information overload to the public and simultaneously but effortlessly draw in the docs and neuros to the cinemas!!! In fact on another forum a really nice man landed in the hospital with a breathing crisis, which is not funny, but the way he described how the doctors and nurses were flicking frantically through a manual to find out what they should do with a gasping myasthenic in the ER just by itself made me think of something for television. I do also know two people who are writing books about characters with other related diseases and the simple ideas behind them are really quite ingenious.

In my life at least, I´ve found that it´s exactly those times when you least think you are reaching someone that they have already changed precisely because of something you said or did that you thought was insignificant.

I apologize with being so late with the thank you but - thank you! I haven't been on this forum in awhile hehe :D