Alice, I completely understand what you are saying and have said. HOWEVER, to say someone doesn't have a disease because they can't find clinical proof when they examine - or don't examine - the patient, is utter nonsense. Especially when that patient is on immunosuppressants which makes the disease disappear.

Ptosis is an obvious point of fatigable weakness. It's certainly not due to a lack of effort. And it doesn't mean we need to "exercise our eyelids" more, as if they are deconditioned.

And you know more than most how deleterious it is to make a patient feel horrid, as it appears he did to Melanie. We need our doctors to support us, to reassure us and not to make us even more upset than we are to have a stupid disease like MG. Maybe if all of us worked harder and exercised more and had a more positive attitude, our diseases would go away. Sorry, being very sarcastic. I've been on the receiving end of too many malicious games by neurologists. No, I'm not saying that's what Dr. Nicolle was doing! But Melanie left his office doubting her disease and her sanity somewhat. You know what I mean by that, Melanie. I know you are sane. But this defending one's disease crap can push a patient over the edge. It's not our JOB to do that, it's a doctor's job.

What if you are raped, have all the physical evidence of it at "diagnosis" but then it all disappears? Were you never raped? Was the damage to your psyche never done? Yes, that's an extreme example but it's to prove a point. If doctors keep not getting a patient's diagnosis definitively right from the get-go, then it's not our fault that they keep doubting it. And us. It's a dangerous way to "play doctor."

I had this "fatigue" BS thrown at me at my first neuro appt. It was not pleasant so it is not a good topic for me. Semantic games are not my favorite to play.

Bottom line is that diagnosing and treating a patient are the goals, while that patient is treated with honesty and respect. If MG experts can't even decide what the "gold standard" is for diagnosing this disease or what the standards (plural) are, how are MG patients going to survive being doctored by them?

Annie

Annie,

Re-read my post. We are in complete agreement.

I fully agree with you that this is ridiculous, to the extent that I have sent a letter to the editor of the journal regarding this paper (let's see if they accept it).

It so happened that when I was in the process of submiting this letter, I came across melanie's post, in which she says that she went to consult the same neurologist that is a co-author on this (forgive me for saying this) ridiculous paper.

I was sent home in "remission", after I had unmeasurable vital capacity (clearly documented by the nurse, on the chart I requested, thanks to your excellent advice), due to "lack of effort", which caused me to use my respirator, because apperently I was too lazy to even breath on my own.

fortunately the stewardress on the airplane had a better clinical judgement then the physicians and nurses in the "excellent myasthenia center" I was in and made sure I get the best possible care. (in fact I am conemplating to ask to be hospitalized on a plane, next time I am in crisis. I can promise you that none of them came over to take my respirator mask of, and measure my vital capacity when I was hardly able to breath with the respirator, nor able to resist this in any possible way- hardly being able to move or talk- a torture I do not wish on my worst enemy).

A QMG score that didn't fit what my neurologist thought it should be (showing worsening instead of improvement, when I was in "remission" ) was marked with a big ?! and "doesn't put any effort". And I was encourage to keep on taking the steroids that I "felt" were making my condition much worse. but he "knew" made me much better.

only now, did I see that he had those results, that clearly showed what I "felt". Results that should have at least made him ask himself some questions, regarding this treatment.

So, as you can see, I have had my "share" of expriences, which helped me understand how neurologist think about this illness and about their patients.

And made me want to do everything within my limited abilities to chage this, in some way.

alice

I'm sorry, Alice, if I came off as angry at you. That has never been the case, nor will it ever be since I can see your character as clear as, well, not an MG diagnosis, but as clear as the truth.

Doctors are entrusted with more than our physical health. I wonder if some of them have forgotten that?

I have felt treated worse than a lab rat during the past ten years at the hands of some neuros. At least the rats probably got cheese.

Thanks Annie and Alice for the info and support. Today is a new day and my son graduates from kindergarten today!

Awwww how sweet Melanie. Enjoy this day with your son because time goes by so fast. It seems like yesterday my son was graduating from kindergarten and now he is on his way to High School next year!

I am very sorry to hear how your last appointment went. I am seronegative but I was diagnosed with MG because all other tests were positive, especially my symptoms.

I know you are frustrated but please don't give up. I will keep you in my thoughts and prayers.

Blessings,
Shari

Thanks Shari.

Keep your head up... I know that this disease is frustrating due to it's subjective nature. You look fine on the outside yet inside it's hell! And to have some sanity from a diagnosis questioned is crazy! Even with a positive diagnosis I find it hard to believe some of the symptoms like when I say "It feels like I've been smiling all day - my face is sore" or "I know when I need more mestinon because the back of my calves get tired" I think one of the major unwritten symptoms of MG is FRUSTRATION!!!! I hope you get the answers you seek!

Thanks Aw3sk3r. Yes frustration is definitely a part of MG. Thankfully so is hope.

Hang in there Melanie, we're all pulling for you. You have a wonderful positive outlook and that goes a long way! Take care.

Big Hugs,
Pat

Thanks Pat