Abby, I agree completely with what you're saying...but that may be because I am one of the MG'ers who experiences comparatively little inconvenience from MG and am quite a bit older than most here. I am pretty sure if my life were impacted to the degree of many of the others in this forum, I would have difficulty seeing MG as anything other than horrible.

But, I also think it is important that everyone who visits this forum realizes that there are two sides to the coin (so well put, Abby). My concern at first was ..would my MG progress to the point I would have a crisis or need aggressive treatment (which to me means anything more than taking Mestinon!)...and if so, how long might it take? So many here were having such a difficult time...it was kind of scary for me.

I would simply like to say that I'm lucky enough to represent 'the other side of the coin'. It's been almost 3 years...and while I notice a few bulbar issues that weren't there 3 years ago...everything is pretty much the same. And I can still do most everything I want - just geared down and for shorter periods of time and with a little help from my generic mestinon!

I still worry about progression..but I learn so much from people in this forum. I feel like I know what kinds of things to watch for, things to do - and not do, how to recognize signals of deterioration EARLY so I can pull back and hopefully avoid a real problem.

So, for what it is worth, there is another side of the coin - we just maybe don't post as often.

I disagree with you about that. If you look at stroke in http://clinicaltrials.gov/ct2/result...cr=Openhttp:// you will find 1311 on-going studies.
If you look at MS http://clinicaltrials.gov/ct2/result...osis&recr=Open you will find 282 studies.
parkinson http://clinicaltrials.gov/ct2/result...nson&recr=Open

So, it is not neurological diseases which are neglected but MG specifically. And the question is why? it is not because it is rare, because there are as rare disease which receive much more attention, and it is not because it is a neurological illness.
If you ask me, the reason is the way in which this illness is perceived.
After my first crisis, my neuorlogist, an MG expert, told me that nowadays every patient with myasthenia is in remission and can lead a completely normal life. I was very glad to hear that, and saw no reason to doubt what he said (mostly that it was also written in my medical text-book).
Since then I have learned much about this illness, and mostly how far from the truth this statement is. I also do not think that the less optimal course of my illness was because I didn't put enough efforts or wasn't positive enough or any other ****. Just like the lack of recovery of some of my patients is not due to any of those reasons. In fact I admire some of them for their courage, determination and resilience.
The neuorlogist who said this to me, has no motivation to search for better treatments for this illness. I seriously doubt that all his patients are in remission and doing well. More likely, those that are not do not feel comfortable telling him that they are not.

I agree that it is important to know both sides of the coin. It is good to know that you can have MG with relatively minor symptoms and it does give hope.
Yet, it is also important that people will know that MG can be a very serious and significantly debilitating disease.
Like you yourself say, knowing about the way it can be, gave you more confidence and knowledge about how to recognize early worsening and avoid further deterioration. It did not create unreasonable concerns and fears.
Research aimed at finding better treatment approaches for patients with more severe diseases, will also give more confidence to you.
Knowing that patients with more severe disease receive adequate care and support from their physicians and the society, will also give you more confidence.

Man, did I EVER open a can of worms?!?!?!?!

VERY interesting to read everyone's point of view. I say that WHATEVER you feel or think is VALID -- whatever is right for you, is RIGHT. I was just saying what I think/feel.

What I have noticed FOR ME -- is that IF I stay RILED UP and UPSET about having "the beast", I just have worse symptoms. If I stay calm and "accept" that MG is now a part of my life -- MG "usually" seems to calm down. NO, it never goes away. Never, ever, EVER! But, I manage to deal with it.......most of the time.........unless I'm having a rip-roaring pity-party.

Like Annie and a couple of others on this board, I don't have many options -- Mestinon is "it". So, my attitude IS the key to managing my disorder. If I get upset and stay upset -- I am ONLY hurting myself. So, I CHOOSE not to stay upset. Is this easy, NO!! I pray a LOT!!

So, some of you may say -- oh, jana must have a very "easy" case of MG. Well, maybe I do. I don't know. I can't say more than a couple of sentences without losing my voice. I cannot run more than about 6 steps without gasping for air. I cannot count to 10 without running out of air. I cannot blow up a balloon. I cannot hold my breath underwater AT ALL. I got excited about finding a lost item the other day and started clapping my hands for joy -- almost passed out. I don't know -- maybe I'm healthier than you -- or maybe I'm worse. All I know is this -- I CHOOSE to be optimistic. Maybe I'm STUPID. Probably so. Wouldn't be the first time. Or the last. But, so far, I haven't been intubated. Would my method work for you? I have NO idea. I don't know if you can MAKE yourself have a certain attitude. Maybe I was just born this way.

If I'm stepping on toes AGAIN, sorry. Not my intent. If you feel I'm doing more "harm" than "good", I'll shut up or leave. NO biggie.

BTW, when I almost passed out from clapping for joy, I closed my eyes, started concentrating on each breath -- started "visualizing" a serene scene in my mind. I didn't move until I felt my heartbeat slow and my breathing calm down. When I have a breathing problem, I STOP in place and refuse to move until it passes. I don't care how it looks to other people -- I'm in my own little world until I recover. Yep, I'm pretty "strange" -- I don't care much what other people think (as in their "judgements" of me). But, I guess you have already figured that out. THAT may be part of what helps me cope, too. NOT being so "tied" to "conventions". I march to the beat of my own drummer.

For what it's worth, I do not think you have a mild illness. In fact, based on your description , I think you have a fairly severe illness which significantly disrupts your life.

I also think that it could possibly be better managed. But, of course I do not know the full details, so can only speculate on that.

Your attitude, in my opinion, is the key to managing your life, not your illness.

why would anyone think that you are stupid, or be annoyed with your decision to be optimistic and calm about your illness, or your life? And what harm can be caused by letting people know the ways in which you have found to deal with it? so, it may possibly help them adjust better to their illness.

Like I said, people can find the way to lead a very good life with MG (or with cancer or even with ALS), this does not say anything about the severity of their illness.

MG can be anywhere from mild, hardly noticeable ocular symptoms to severe life-threatening respiratory symptoms and the entire spectrum in-between.

Just like cancer can be a localized lesion with full surgical cure or a metastatic disease, and the entire spectrum in-between.

This has been a very interesting post of thoughts and experiences from fellow MG'ers. I have been living with MG and Stiff Person Syndrone for two years and am unable to take Mestinon. When I had my first episode of sever spasms a week or two after my thymetomy, they immedicately started me on Mestinon. Thank God my husband had stayed with me throughout the night because it wasn't long before my lungs stopped functioning and I started drowning in my own saliva. He was suctioning my mouth while the doctors were standing around not knowing what to do. I ended up in ICU on an inubator and about seven IV's for a week, almost had heart failure but survived. My neulogist specializes in ALS patients, he happened to be on call when I ended up in ICU and took over my treatment from there. I was at a teaching hospital so I had several different neulogist seeing me during my stay in hospital.

I have tried IVIG at least 5 times and one treatment of plasmaphreses with no response. So I'm left with living on drugs that in my thoughts simply dumb me down so that I don't get too upset or can go to a restaurant without becoming so stiff from the noise level that I can't walk.

Just before Christmas I realized that one of my prescriptions (valium) was going to run out so I tried to start the process to get his office to approve the renewal. In my opinion they were not very responsive to my request and finally I became upset about the situation while talking to one lady in his office. I apologized to her for my reaction but it is hard to get someone to understand that if I don't take my medicine the results can be devistating to me. I just sound like a drug addict which is what I have become. I know my neuro was on vacation during this time but because I was upset my husband sent him an email asking for his help. Of course his email returned a message that he was out of touch for a week.

Well, I had my three month appointment the second week of January and my neuro's attitude was quite cool. He pulled his chair close to me and for the first time said that there was nothing that he could do to make me better and cure me (something I'd already figured out). He also said that maybe I needed to find a professional to talk to because I'm angry, upset about my life change, etc. Well DUH! This is something that we'd talked about for two years but because I caused a fuss about my prescription during his vacation I feel that he is dismissing me as a patient.

Sorry for such a long post, but it has been such a frustrating experience for me and now my neuro is throwing up his hands and making me feel like I just need to go away because he has real sick patients with ALS and a chance to help them since he's been approved to use the stem cell treatment.

For the past two years he has been a cheerleader for me, always seems amazed that I survived the Mestinon drama. Not anymore.

Southern Bell

Before I had a diagnosis, I got to this point with my neurologist: he didn't know what was wrong with me, wasn't willing to give me experimental treatments without a diagnosis, and couldn't think of anything else to test me for. He was telling me to come back in six months--that was the extent of his "management" of my illness.

I thought, "This is it: I've reached the end of the road. I've gotten as much from the medical establishment as I'm going to get."

But I was wrong. I don't know if this is only my neurologist, or if it's typical, but since he couldn't do anything for me, he was more than happy to pass me off to another neurologist. It was in the best interests of both of us. He found me an ueber-expert in Boston, who diagnosed me.

Is there a chance you can get a new neurologist who isn't willing to just give up like that?

I'm so sorry for what you're going through.

Abby

Unfortunately.......trying to choose words carefully, hoping that I'm gonna say this right.......there is quite a bit in the medical literature linking MGers to psychiatric "problems". It isn't "fair", or in my opinion, TRUE.....but, I sort of understand how the docs and the studies got this "impression". MGers are worse when stressed and better when calm. I can, for instance, "turn on a dime". I can go from not being able to sqeak out a single word to being able to say a full sentence. Wow, a WHOLE sentence!! NOT being sarcastic, here, REALLY!! But, to a doctor who is observing me, this MUST seem like I am NUTS!!

As previously noted, when I am calm, MG is bearable. When, I am upset, MG is bad -- and it is like the dog chasing its tail -- the worsening symptoms get me MORE upset, and I might "appear" hysterical. I'm sure that this would NOT put me in the best light in my medical practitioner's eyes. Is this FAIR? Of course NOT! Is this LIFE? Unfortunately, YES!

So, Southern Bell, if you are ASKING for an opinion........I would suggest that you willingly GO to a "professional" and "spill the beans". I think that the "professional", when given all of this overwhelming info, would, without a doubt, see that YOUR response to the situation was perfectly normal, reasonable, and SANE! And, I think that your acceptance of his advice would speak VOLUMES to your neurologist. Resistance, after all, sometimes just "bites us in the butt" -- and makes us look GUILTY, when we are, in fact, INNOCENT.

BTW, I'd be willing to bet that your neuro's office staff made a BIG DEAL about this -- probably someone with a lot of "pull" did a lot of tongue wagging and got him all stirred up.

Hope this makes sense.

I've been thinking about this thread.

I actually felt bad about what I typed, and I'm not going to reread it.

I realize that I actually am doing relatively okay as far as my MG symptoms go. I have ups and downs, but the ups and downs are stabilizing somewhat so I don't have those terribly weak days in bed so much. I am thankful for that. I don't have trouble breathing and I haven't had double vision for a while now. I do pace myself and can do very little...if I pushed myself I suspect the scariest of symptoms would return. I don't want to test that anymore.

On the other hand, I am far from normal. I've been struggling to learn how to live with MG and I am figuring it out. I'm making major life changes and am becoming a more relaxed person.

I have a big next step though that is causing me much frustration and at times fear. I need a job or a means of support. I don't have that.

I've been denied for disability twice and can't get myself to reapply. I feel guilty!

If I had financial support in my situation, I'd probably be saying that MG isn't that bad (for me). But since I don't have support other than my retirement account which I am living on at 40 years old, I am afraid for the future and I must say MG is terrible given this situation. I can't work and I've tried! Every time I try to do anything regularly I crash.

I've been avoiding doing things, ignoring that I don't have a future, and I am truly doing okay. I am hoping that MG will heal somehow if I take it easy for a while, and stop trying to work...I know chances are very low that I will go into remission, but it is my only hope right now.

If only I could figure out how to earn money without pushing myself too hard.

IF perhaps MG hadn't caught me at a time between jobs (and it wasn't my fault I had to leave my job, but that is another story), I would have been able to work with my employer so that I could keep working. Now, I can't imagine anyone wanting to hire me. I will be looking for a job next year however, I have no choice. I do want to work, I'd love to feel useful again somehow. I suspect I'll likely be living on welfare if I can't find a job (I can't get welfare now because of my savings account). Oh, I hate thinking about the future. MG has taken away my future! I hope I will be telling a different story next year. I wish I had support in finding a job that I can do and an employer willing to hire me.

So what I am saying is that I think part of how we judge how bad MG is, is by how much support we get by others including society in general. It is because I have no support that I am saying my MG is bad.

I may of course be wrong, but I think you may have misinterpreted what he said.
To me it sounds like he was trying to be honest with you about your condition. He was also acknowledging how hard it is to deal with this emotionally, and felt that he may not be the right person to help you with it. I don't think he was very sensitive in the way he did it, and possibly made you feel his own frustration with the situation, but it doesn't sound like he was giving up on you or dismissing you as a patient.

Many physicians find it hard to discuss the limitations of medicine. They don't realize that even when there is no further pharmacological treatment there is still a lot you can do. They see their patient's (normal) emotional response as anger at them.

If I were you, I wouldn't discount two years, just because of one less good day. Physicians are just people. they too have their own emotions, frustrations and sometimes just a bad day.