MG Follow-Up Study Data
 

I wanted to share some information I found. I enjoy seeing actual data about MG, especially the remission and improvement rates. These quotes are from the website http://www.thedoctorsdoctor.com/dise...nia_gravis.htm

J Neurol 1997 Feb;244(2):112-8 Abstract quote
One hundred consecutive patients with myasthenia gravis (MG) referred between 1985 and 1989 were analysed for epidemiological characteristics, evolution of early signs, delay in diagnosis, yield of diagnostic tests and effects of treatment.

The female to male ratio was 1.6:1.0. Sixteen patients had a thymoma. Ocular MG occurred in 14. Associated autoimmune diseases were found in 15 patients. In 34% of the women and 10% of the men the diagnosis was delayed for more than 2 years. In the first 3 months progression was more rapid in men than in women. Anti-acetylcholine receptor antibodies were found in 94% of the patients with generalized MG and in 29% of the ocular patients. The neostigmine or the edrophonium test was positive in 84% of the generalized and in 60% of the ocular patients. Electromyography was diagnostic in 71% of the generalized and in 42% of the ocular patients tested. Thymectomy was performed in 56 patients (12 with thymomas). Fifty-one per cent were treated with one or more immunosuppressive drugs, at any time.

After a mean follow-up of 9.6 years after onset remissions had occurred in 43%, considerable improvement in 25%, moderate improvement in 20% and 12% remained unchanged. There were no deaths due to MG. Thirty-six per cent remained dependent on immunosuppressive drugs. Medication-free remission was most frequent (35%) in the early-onset (< 50 years) group. Side-effects of pyridostigmine were noted in 34% of 99 patients, of prednisone in 65% of 49 patients, and of azathioprine in 54% of 28 patients, but these necessitated stopping the drug in only 1%, 10% and 14% respectively.

and

J Neurol 1990 Oct;237(6):339-44 Abstract quote
A multicentre retrospective study was carried out on the characteristics and course of myasthenia gravis (MG) in Italy. Data from 1152 patients, fairly representative of the myasthenic population seeking medical advice, were analysed for diagnostic criteria, clinical aspects and therapeutic approaches. Mean follow-up was 4.9 years. The disease was correctly diagnosed within 2 years of the onset in 80% of cases.

Onset of symptoms peaked in the second and third decade in females and fell between 20 and 59 years in males. At first observation 87% of the patients had generalized MG. Maximal worsening was observed within 3 years in 77% of patients. At the last follow-up, 35% of cases were symptom-free (pharmacological remission 24%, remission without treatment 11%). The more severe the disease at the first observation and at the maximal worsening of symptoms, the lower was the proportion of remissions. Steroids were given in 54% and immunosuppressants in 18%. Thymectomy was performed in 72%, mostly in women, younger than age 40, and with generalized MG.

Thymectomy seemed to improve the course of the disease, mostly in patients operated on shortly after diagnosis and those with generalized mild-to-moderate disease and with a normally involuted thymus. MG was lethal in 4% of patients, principally men, older than 40, in grade 3 or worse at first observation, with a short history of disease, and with thymona.

Susan, Thanks for posting these.

I like cold hard facts too but I still find studies like these deceptive. It's not very clear, you know what I mean? Yes, they say that 35% experienced drug-free remission (1st article) but they don't say for how long. And it was done such a long time ago.

The second article is even less clear. The fact that mostly women had a thymectomy is curious. It sounds like they must have an "alogrithm" for who to perform them on that might include mainly women. And a small percentage of patients reached drug-free remission and we don't know how long that lasted. With MG, you never know if it is temporary or not because the disease is only "on vacation."

There are some studies that speak to quality of life, which I find equally as interesting. MG is only ONE component of someone's quality of life and well-being. It involves so much more than what a disease takes away from you, including state of mind, financial situation, ability to cope with stress, etc. It's not all "interconnected" with MG.

http://www.ncbi.nlm.nih.gov/pubmed/21082698

Here is the "MG-QOL15" list. After filling it out, I realize that my "QOL" is in the toilet. As if I needed a checklist to know that.

http://publishing.yudu.com/Library/A...esources/5.htm

Hit "their" print button on the page to get it printed. It's 7 pages long. They also have treatments listed and other relevant info.

I also like looking at any articles the Oxford guys have done. ;)

I think it's really useful for us to browse PubMed from time to time. But what is more useful would be new drugs/treatments, nicer neurologists and more useful testing like photographs of our faces. Outside the box thinking and treatment helps me more than studies. :cool:

I have to wonder how the odds of remission with MG is in comparison to the odds of winning money at a casino. It all seems like a big crap shoot.

Thanks.

Annie

Yes, this is one of the papers I have been citing, but mostly this-

"The disease was correctly diagnosed within 2 years of the onset in 80% of cases".

which means that 20% of the patients, having a potentially treatable disease, that should be treated as early as possible, are not diagnosed even after 2 years!

"The more severe the disease at the first observation and at the maximal worsening of symptoms, the lower was the proportion of remissions."

I would think (as the authors of a review citing this paper did) that some of those patients, had they been diagnosed earlier (and not after more then a year), would have a better chance of remission.

"even with treatment the proportion of remissions was lower in patients with more severe disease at the first observation. the authors interpreted this as suggesting that early diagnosis and intervention may improve prognosis. only 58% were correctly diagnosed as MG during the first year of their illness, and 80% within 2 years. (M&N, april 2004, p. 484)".

Also, take into account that patients like Chloe Atkins that never fulfill the diagnostic criteria for myasthenia are not included in those statistics!
And I do not think any one knows (or cares to know) how many patients like her there really are, that do not have the emotional strength required to fight this, and just succumb to their illness and live (or die) with the diagnosis of "functional/coversion disorder".

If you take into account that about 50% of patients with a neurological illness (eg-those that are referred for evaluation in a neurology clinic, by other physicians) are diagnosed as conversion/functional disorder, because like Chloe Atkins they do not have "objective" evidence for their illness, you may have some possible idea of the extent of this problem.

AnnieB,

Thanks for sharing the info. I really like the QOL (quality of life) form.

I found it depressing to fill out the MG-QOL, but at the same time it makes me better aware of just how much MG has changed my life. I think I often try to deny just how bad it is. I think it would be helpful to fill out this form occasionally, for myself.

The good news is that after filling out this form and comparing it to what I think I would have marked when I first got MG, I have improved in three areas. My eye troubles are much less. And, mostly due to change of habits, I generally don't have trouble with personal grooming. Thirdly, I have much less trouble walking, I think this is mostly because I have learned to walk more slowly and carefully...I do have trouble if I try to walk fast, I still run into things, trip or lose my balance.

I have thought about this form and I am considering using it to determine which area of my life I need to work on. Some of these issues can be overcome by change of habits. It takes a lot of time to change habits and learn new ways to live. I know I am still overwhelmed with all the issues MG has brought into my life (one of the questions on the form) and thinking about it like this, by breaking the issues down into categories, is helpful.

Today I decided that I am going to come up with my own list using this QOL questionaire as a starting point. I really need to find a way to make my life better. I feel as if I spend every day taking pills and resting, planning my whole life around my MG symptoms. It's miserable. Everything I have worked for all my life is gone, I need new goals, something to look forward to ...

I wish there were better treatments and diagnostic tools...
I think having nicer doctors would be the best improvement of all!

Re: QOL: I think mine has improved since I stopped ending up on the floor so much. I'm not stronger, but I have learned somewhat how to avoid collapsing. When I am that weak, I just need to get to the nearest couch or chair before I go down, and I do that by locking my knees and walking with stiff legs. That works because the reason I end up on the floor is that when I bend my knees, even just a little to take a step, I don't have the strength to straighten up again--so I go down.

Abby

Yeah, but you guys, neurologists say you can live a completely normal life with MG. :Noooo:

Finding myself in mainly the 4's and 5's was depressing. I can be in denial about it all on a daily basis but to see it in black and white is too real.

AnnieB, that's what my neuro said...I still haven't figured out how a person is supposed to live a normal life, because nothing is normal about MG. I like the shaking-the-head-no smiley.:D

Abby, I am like you...I don't think I am generally stronger, just learning new ways to live and to react.

This is a question that really bothers me. how many patients do live a normal life with MG? and by normal I mean real normal.
Because it makes a big difference, if people like me are a very small minority- a very rare extreme of a relatively rare illness, and then it is very hard trying to convince of the importance of finding better treatment approaches, or if most people with MG are like that.

I am not sure any one has the answer. I am also not sure that there aren't many more patients with MG like me (and Chloe Atkin's book made me think it ever more) that don't even know they have MG as this is not even considered, or that their MG is "ruled out" even if it is suspected.

alice

After I had my test, my husband was in there with me, he asked the doctor who gave the test how will this affect me if it came back positive. He said, " she can live a normal life as always. I have patients that still play football, baseball, and their life has not changed." They are better than I am or either I am more of a whimp. Going to work everyday is just about all I can do. Cooking supper, cleaning, etc before bedtime is out. That certainly isn't the normal life I had before. I ask the same question, what is normal. I missed the boat somewhere. :) Desert Flower. I can relate to your post. Something has got to change. I'm tired of being tired and trying to find a better outlet. I'm just tired of people at work thinking "get over it." By gosh, I am trying and heaven forbid don't even think about saying "I am really tired today." Anyway, everyone try to have a good day today and take care of yourself. busy

The fact that someone with MG plays football or baseball (or tell their neurologists that they do) does not mean that they have a normal life.
I lived a "normal life" for more then 3 years- I continued to work full time as a physician, bring up my two sons, and even go to conferences abroad. but, my life was very far from normal. I would frequently "crash" in the middle of clinic, or have one of my patients ask why I ran up 8 flight of stairs, instead of taking the elevator (needless to say that I reached this level of shortness of breath just from walking from the elevator to him room). etc.

I recently found out that when my WLE neurologist admitted me for plasmapheresis and steroids, he wrote to the plasmapheresis team that if there is no hospital bed available I could easily have it as an out-patient as I am working and was able to fly over, so obviously am not very ill. At that time I was officially working but not much more then that, and required respiratory support after every minor effort, and obviously during a plane flight.

so, I now take it with a grain of salt when neurologists tell me about their patients that play football and lead a completely normal life.

it is true that you can do almost anything you want with MG, the only question is what is going to be the price. so possibly that avid football player spends a few days in bed after each time in order to recover.

the president of the US came to visit Russia. But, what he was most impressed with was a cage in the zoo in which a wolf and a lamb were happily sitting together. How do you do that? he asked. how did you get those two animals to be in the same cage so peacefully. Oh, this is very easy they replied. it depends on how many lambs you are ready to sacrifice.

At my last appointment, I had a very intelligent young resident interview and examine me prior to seeing my doctor. She asked how MG has impacted my life. I told her that I had changed -- my interests/hobbies were now focused according to my current, limited abilities -- my life NOW is completely different from my life THEN. She seemed to understand. I think she will become a good doctor.

After reading this thread, I wonder........................am I part of the problem?:( Have I adjusted tooooooo well? When I go to my MG specialist, I no longer complain about what I can't do -- I've accepted my limitations -- I'm happy for what I can still do -- and rejoice for the little improvements (usually temporary) that I see along the way.

Attitudes like mine really COULD be confusing to doctors. Right??

I stayed so confused Jana that I don't complain when I go to the doctor either. He asks questions and I answer. Once in a while, I will ask his opinion on something but that is how I am. He is really trying to help me and honestly, I don't know what to say. I am taking the meds and regrouping with tasks. I usually just go in with a good attitude and smiling because he has always been on top of things and I don't won't to rock the boat. I did ask him about the crisis I always hear about and he said if I have not had one by now that I would not have one. So I thought, well, I guess I can handle the rest as I was doing before I was diagnosed. With him monitoriing me every few months and monitoring my meds, I don't know what else he can do for me. My attitutude confuses a lot of people even family because I don't lay around sick 24/7. My doctor told me not to because that was more harmful due to getting muscle atrophy. On my days off and I am really wiped out, I just lie on the couch and rest. I am aware of my every move. I told someone one time this was a battle between me, myself, and I, and there was nothing they could do to help me. What else is there. If I ever have a need where I really need someone other than my spouse, I would not hesitate to call. :hug:

I have a little different thought ....

Since I don't want any drugs other than Mestinon - - hopefully forever---I am somewhat careful about detailing lifestyle changes at appointments - - - - cause I know that will invoke the discussion about trying the drugs I don't want to take!! (We started down this path once, and I'm not willingly going to go there again.)

If (when) I am either unhappy enough with my lifestyle...or if I find myself in a dangerous medical situation...I'll be the first to re-evaluate with neuro. But until then, I keep my own measurements.

Every six months, I reevaluate my abilities on a few certain tasks and lifestyle things so I can be honest with myself about if I'm better or worse or about the same. A few things have surfaced that I find interesting...like I am always 'better' in the June to Jan six months. Really?? or mentally?? Related to hours of sunshine? or MG? Related to more activity? Related to sheer coincidence??? Who knows...it's just the way it has been.

The funny thing is that until I do my 'evaluation' and compare it to the previous ones -- I really don't appreciate the subtle adjustments. And perhaps, as individuals, there is a tendency to overswing the pendulum depending upon what we wish the outcome to be. That seems perfectly human to me. Perhaps some of us could do more and some of us should do less. But the point is - - - it doesn't matter!

I think we do the best we can for the way WE feel about our life and lifestyle...and that just needs to be good enough!

Alicemd, thank you for this. I have been so sick with the severe pain in my face from the myositis and breathing worse causing not only a bad sore throat but loss of my talking I am having flits of despair. That scares me but this my only option is to STOP and rest 24/7. No talking no walking no laundry barely online today thru extremely blurry eyes. And worst no one to hold me. I cant remember the last someone held me.

Annie59


"Also, take into account that patients like Chloe Atkins that never fulfill the diagnostic criteria for myasthenia are not included in those statistics!
And I do not think any one knows (or cares to know) how many patients like her there really are, that do not have the emotional strength required to fight this, and just succumb to their illness and live (or die) with the diagnosis of "functional/coversion disorder".

If you take into account that about 50% of patients with a neurological illness (eg-those that are referred for evaluation in a neurology clinic, by other physicians) are diagnosed as conversion/functional disorder, because like Chloe Atkins they do not have "objective" evidence for their illness, you may have some possible idea of the extent of this problem.[/QUOTE]

Suev and Jana,

I have similar feelings. I don't want to take any more drugs, Mestinon is all I want to take...so I hesitate to keep telling my Neuro about how I am not able to "live a normal life", but I tell him anyway.

He asks how I am doing and I tell him that generally I am doing ok, at least I can eat and brush my hair and take care of myself, and I am still thankful for that, but I can't do much else. He asks what I can't do and I start listing to him things such as work, have hobbies, do things with my kids, do any evening activities...and he'll interupt me and tell me he can't do anything about that, maybe I need to go to a therapist or take more Mestinon. He asks if I'm depressed, I say yes, and explain it is because I rarely get to do anything enjoyable, I spend all my waking minutes dealing with MG. He gave me a card for a therapist.

I think the next time I'll remind him that he had told me I would be able to live a normal life and that I can't. I hate complaining because I am enourmously thankful for a somewhat fast diagnosis and treatment, it saved my life in my opinion. I am mostly just not happy about this statement about living normally. I think it would be better if the doctors were honest and told us that we would need to make adjustments, but that given time we should be able to find a new way to live, maybe even make suggestions to some type of therapist who can help with this.

I am hopeful that I can find a new way to live, but it is taking so long. I have learned how to walk with MG, and learned how to see when I get double vision, I am now in the process of learning new habits to cope with stress and finances (I applied for Soc Sec disability).

These are the issues I wish my doctor would help me with. Suggestions on how to learn how to live with MG. It is obvious to me that even on my best days, I can't live normally. As Alice mentioned, we can do normal things sometimes, but there is always that crash afterwards....I do decide sone days when I feel okay to do normal things, but I have to plan for at least three days of not being able to do anything afterwards, I even have to make sure there is plenty to eat because I know I won't be cooking meals. I've had this crash last for a whole month and that was awful.

Even if I can do a thing doesn't mean I should, I always have to think about the effects every action will have on tomorrow.

I think the key in dealing with MG is living a different life. I'm tired of hoping to be "normal" and will settle for being happy.

I guess my point is that I hope for ideas on new ways to live rather than new treatments. I don't like drugs, they always come with side effects. I do know that there are others with more severe MG symptoms and new treatments are always good, it is good to have choices. I'd prefer a list of suggestions like what I learn here in this forum. I thank everyone here, you have helped me cope with MG more than any other person or website. :hug:

I am overwhelmed with having MG. It seems silly that each one of us has to reinvent the list of helpful things to do or avoid on our own, but that is how it feels to me. And even when I discover new things that would be helpful it takes so long to get into new habits. Just like walking, I've always been a fast walker and I kept wearing myself out...it has only been recently, after about 1 1/2 years that I have been able to learn to walk slowly. Sounds silly, but it has been an enormous help.

Alice, I love the story. I have to consider "how many lambs I want to sacrifice" before I do any activity.

Okay, what started as a simple response turned into a rant. I appreciate everyone who responed to my post. I hope we can all find ways to live happily with our MG. I do believe it is possible, but it takes a lot of work.

Almost everytime I go to my MG specialist, he talks about the need for a support group -- an "in-person" support group in our area. I tell him that I have on-line support -- and he is grateful for that. I think that "some" doctors realize that they do NOT have all of the answers or best suggestions for living with MG. The ones who talk about "normal" lives are most likely quoting a textbook -- IMHO, a poorly written textbook.

I'm sure I've said this here (I know I say it all the time in my "real" life) -- I learned VERY early on that STRESS was the WORST thing for MY MG. There are types of stress that you cannot avoid:
*if you are still working
*if you have children (especially ones still at home)
*if you have a spouse who doesn't understand or care about your illness
*financial worries
*aging parents
(these are all I can think of in my early morning "brain fog" -- I'm sure there are more)

BUT, if you can get a HANDLE on all of the OTHER stresses in your life -- the things that really do NOT matter -- you might be able to help your MG to calm down.

I was SOOOOOOOO Type A -- from my hair, make-up, clothes, house, car, job, vacations, etc. -- I was totally OCD about almost EVERYTHING. I have let almost ALL of this GOOOOOOOOO! My house is now a mess -- I hardly EVER put make-up on -- don't have the arm strength to wash the car. WHO CARES?!?!?! I have LEARNED what is important -- God has seen to that!!! All of that talk about "stopping to smell the roses" -- I do!!

DesertFlower, I know that what I've said here sounds SOOOOOO simple -- and it is anything BUT!! My "new" life is 180° from the "old" one. It is almost like I got hit in the head and had to learn everything from scratch. It took a LONG time to "fall" into my "new" routines.

Like you and Sue, I'm not taking anything other than Mestinon -- so lifestyle changes were my only option -- I was counting on them to work -- and so far, they have! Of course, I'm NOT running marathons -- or dancing at parties -- or exploring the Amazon -- but, I am OK!

Jana, I'm so glad to hear how happy you sound! :D

I'm glad your okay. I have a lot of hope in lifestyle changes. I am trying to keep my life simple. It sounds to me like you have found the place I am trying to get to. It takes so long to change habits.

I agree that stress is one of the worst things. I am finding that things I didn't even think about before can cause stress for me now, if someone asks me to make a plan, even something simple like "what time can I call you?" it sends me into a panic. This seems so stupid it makes me angry. Why do I get stressed so easily? I'm a completely new person now with MG.

I look forward to the day when I learn how to live with MG. My biggest issues now are stress and finances. I can only work and little and even that small amount of work makes it so I can do little else...so I've quit working and am living on my savings account for now, hoping the time will help me discover new options. I hope the soc sec disability goes through otherwise I have to find some other option.

Desert flower,

Many physicians don't like or want or know how to address their patient's life, and the way their illness affects it. At the same time they don't like to see their patients miserable so the solution is to suggest that someone else will take care of that.

when I started my fellowship in hematology I had a relatively young patient with Hodgkin's disease. she was not stoic about it, hated receiving chemo. hated the side effects and was very depressed. So, one day I suggested to her that she should consult a psychologist who could help.

Her response was- Do you think I have the time and energy to start discussing childhood memories now, when I have to deal with this illness. and then she asked me- would you suggest that a warrior in the midst of a battle will go to a psychologist?

In that case, I said to her, let me know how I can help. from that moment on, she started discussing with me how her illness affected her work, her life at home. she discussed her fears and concerns and hopes. nothing was "psychological" or related to what her father did when she was 4. it was all related to what her illness did to her now. I realized that no psychologist could give her the reassurance I could, or address the way a specific medication affected her and try to change it to one with less significant side-effects for her. her physical and psychological state were totally connected and had to be dealt together.

with my on-going support she gradually did better. it took her more then 2 years to recover from the side-effects of the treatment, and the emotional upheaval her illness caused her. again, it was impossible to dissconect it, and it didn't really matter. I suggested a gradual return to work and not feeling guilty for pampering herself.

What I learned from her and other patients I took care of over those years, helped me tremendously in dealing with my own illness, and in not looking for answers in the wrong place. I knew that my emotional responses were completely normal as I have seen them time and again.

I knew I had to find a physician like me, to support me in all this. One who will know enough about my illness, give me reassurance and help me deal with the hardships I encounter. fortunately, I found one eventually. All I had to do was look in the mirror...

The bottom line is that when you have an illness that significantly affects your life, you can't be "happy" all the time. it is completely normal to have times of being sad, and even despair. at the same time, there is also hope, and appreciating the small things in life you took for granted before.

learning to live with an illness is a long process that I believe never fully ends. it involves inevitable physical and emotional ups and downs for the patient and his loved ones. its a big change in your life and it is unrealistic to expect it not to affect you in various ways. we are each different and unique and therefore there is no "normal" and no right and wrong.



alice

Alice,

You've said here something like what I'd like to hear from my neuro, or at least a recommendation from him of someone appropriate for me to talk to, someone who specializes in this sort of situation. I'd like him to admit that things aren't necessarily normal for me just because I have a treatment, maybe even tell me of examples of what other people have done, give me some sort of hope. I'm overwhelmed with figuring out how to live a new life, not truly depressed, although if I continue to be overwhelmed I think it will turn into depression. For now I still have some hope of learning how to deal with this, but I'd like to have a doctor who has hope rather than some unrealistic expectation. It wouldn't be helpful to treat depression for me, but rather to find solutions to the issues MG has brought into my life.

I have a phone number for another neurologist who specializes in MG, I'm going to make an appointment for a consultation. I really don't want to be doctor searching, but I have decided that it doesn't hurt to at least meet him.

I am not a doctor but it seems to me that it is pretty useless to continue seeing my current neuro now, the only thing he is good for at this point is for continuing my Mestinon prescription. He was wonderfully helpful in getting a diagnosis and I am greatly thankful to him for that, but I have reached a point where I need a different kind of doctor. It seems to me like I have become my own doctor. Why should I keep paying him so much money just to write a prescription? If I am paying him shouldn't he be helping me? I don't expect much, maybe a suggestion now and then, or a kind word of encouragement to keep working on finding new ways to live. (as a side note, I told him of how I found that a change of diet has helped, he told me that eating different foods won't have an effect on my MG, but I know that it does! ).

I don't need to be happy all the time, and I enjoy living life with a whole range of emotions, feeling sad makes the good times all that much better...I'd just like to be able to be happy sometimes and not spend most of my time worrying about the future and trying to make it through today.

Thank you for these kind words Alice. I suspect your patients are thankful to have you as their doctor.

Even though I am a physician, I have learned much more about this illness and how to live with it, from other patients then from neurologists.

Frankly, I don't think they know what it means. I don't think any of them is truly interested. I don't think they pay much thought to the question of what they can do to help their patients lead a more normal life. I don't think they understand the kind of life-style adjustments that are required. I don't think they understand or bother to try and understand the tremendous impact of this illness on one's life.

I have yet to meet a neurologist that after taking care of me for a few months or years, if asked, will be able to tell you anything about me, more then my age, and my profession. I don't think any of those involved in my care knew how old my children are, how I manage to work despite my limitations, how I manage the activities of daily living. the only neurologists that actually checked what I can do were those that had to make decisions regarding my dissabilty and driving capabilities. they were the only ones that wanted to see what happens when I exert myself.

I was hospitalized for an entire month in one of the leading MG centers. I was referred there because I had a rare type of MG. you would think that this would make the residents there somewhat interested at least in my illness if not in me. but it didn't. none of them came even once to ask me what my life was like. none of them came to see what happens to me when I take a shower. none of them understood or tried to understand why I require respiratory support after such a routine activity. none of them bothered to come and see me when the concerned nurse told them that I am unable to get back to bed from the chair I was sitting in.

Their approach made me truly doubt their knowledge and understanding of this illness even in less rare and unusual "cases". And if this is so in one of the leading MG centers in the world, what would you expect elsewhere?

if your neurologist thinks that your difficulty in your hobbies, doing things with your kids, or in the evenings is not due to your illness, just because he can't see your weakness when you are in his office, then he understands very little about this illness.

I have learned to be very honest with myself and those around me about my limitations. (regardless of what my neurologists think or don't think about them). I have found innovative ways to do what I need and want, but sometimes I just prefer not to do anything and just rest.

I have learned that in order to deal with the hardships and losses of this illness, I have to have something to compensate for it, at least once a week. and if there is nothing that happened and was good enough, or if there were too many frustrating experiences, I try to "create" something.

It can be buying something nice for my 2 year old niece, it can be flowers, it an be listening to my son play the cello. what ever makes me stupidly and childishly happy.

and there are times when I just go to my room and rest, when I feel that all my batteries are empty. I don't want to see anyone or talk to anyone. I just want to lie quietly and think or not even think.

last time I did that my husband got concerned, as I just lay in bed and did nothing for two days. my son came to visit and asked me why I wasn't coming to join them. I said to him that when you have an illness in which everything is an effort, sometimes all you want to do is rest, and I am trying to see what will happen if I just lie in bed, without eating, or doing anything.

My son said that it sounds like an interesting experiment, but he doesn't think I could do it for long. He was right. I got up the next day, feeling much better and ready to tackle everything again.

living with this illness is not easy-not for us and not for those around us. its a daily struggle of finding the way to do what was trivial for us before.

maybe some patients do achieve a full remission ( I have yet to meet one of them, but possibly they do exist), and do not have any symptoms of this illness anymore, but then they don't have to live with it, and can't be given to us as an example of how well they deal with their illness, as opposed to us that have to deal with it on a daily/hourly basis.

talking with other patients and seeing how this illness affects them, can be very helpful. some have solutions that can work for you and some just make you feel less lonely knowing that you are not the only one that has to deal with this.

Hi Alice MD,
Although I do not have MG I relate to the lack of compassion and misunderstanding of symtoms and their effects that many of us living with various neuromuscular disease are met with. I have been trying to get a solid dx for a number of years and have been met with various levels of contempt, abuse and negligence, if the face of 5 EMG's postive for myotonia and a muscle biopsy that showed moderate atrophy - not to mention my progressing weakness, numbness and illness over a 6 year period...

but I went to a 2nd neurologist and he was dismissive and told me he had great news I was fine the EMG's and biopsy did not matter

I just had Fibromyalgia, and that my hyperefexia and tremor, inbalence was just normal for a woman of my age..38...So I understand the feeling that it is just completely impossible to explain, one experience to someone who has deceided they know what is wrong with you.
It is hard to keep a sense of autonomy when one is so completely demeaned and given no options.

I am sorry, I just saw your post now. All I can say is trust yourself and keep on searching for a physician that will be able to help.
It is sometimes very hard to keep your head above the water and think clearly, under those circumstances. Most patients will nicely fit into known boxes called "diagnoses", so many physicians just don't bother with those that don't. There are about 6000 different rare diseases, that affect very few people, are not well described in text-books and are mostly used for intriguing "multiple choice" questions in board-certification examinations.

most physicians are trained to concentrate on the "bread and butter" of their profession. are constantly told that "what's common is common" and gradually lose the curiosity to gather a deep and true understanding of their patient's symptoms. But, some are not. some see the patient not the disease, some want to truly find the way to help. and they do exist.

Yes quality of life .....good point.