Hi Everyone!

Let me apologize in advance. This is going to be a long post. No laughing , but I just figured out that there was more than one page to this post, so I’ve been missing out on a lot! So, wondergirl & AnnieB3, I finally see your links! LOL.

---Stellatum
I will send you a PM (I think that means Personal Message) regarding my symptoms and we can exchange stories. Fortunately, you are still allowed to take the mestinon. I was told not to take mestinon for 2 days prior to my SFEMG, but I have stopped taking it now. My SFEMG is not until Sept 29th. I will only take it if I start to have severe breathing problems. I want to make sure that it is all out of my system before the SFEMG.

I worry that your getting muscles twitches while on the mestinon. This does not happen to me. Have you discussed this with your neuro?

In my case, I think the mestinon helps significantly and I do worry about going off it for breathing reasons, but I’m willing to chance it. I don’t want to have any reason that the SFEMG might give a false-negative.

I’ve been doing a lot of research on neuromuscular problems. Send me a list of your symptoms and how they started, etc… And I will see if they ring any bells. No promises, but it couldn’t hurt.

Prayers for diagnoses for both of us! Best wishes, Lindie.

--AnnieB3
I want to know mestinon’s effect on healthy people because I want to understand the neuro’s rationale for taking me off the mestinon if my SFEMG is negative. In my opinion, the mestinon SIGNIFICANTLY increases my strength. He has NEVER seen its effects on me. If my SFEMG is negative, I think he is going to try and say that there is nothing wrong with me (i.e. I’m a “healthy” individual). I was hoping to find data that mestinon would not increase strength in a healthy individual or would have a deleterious effect.

Unfortunately, thus far, that does not seem to be the case. It appears that a deleterious effect can occur only if too much mestinon is ingested. However, 30mg 3 times a day, does not appear to be too much and can apparently improve the strength in a healthy individual. This does not help my case. Right now I am only being allowed 30mg 3 times a day. Thus, he could argue, if my SFEMG is negative, that the improved strength I get from mestinon is not significant or is caused by the placebo effect.

Who is Dr. Howard?

--Wondergirl and AnnieB3
Okay, now I want to get in on the “trashcan” diagnosis subject. MG is definitely not a trash can diagnosis. The problem is that people like wondergirl and me who are struggling to find out what is wrong with us do often get trashcan diagnoses, such as fibromyalagia, anxiety, depression, conversion disorder, chronic fatigue syndrome, etc… Not because these diagnoses are "trash" in any way, but because they are given without thorough investigation into your ailment. These diagnoses are often given when a doctor doesn't know what is wrong with you and has thrown his hands up.

Unfortunately, once you are pigeon-holed with one of these diagnoses, especially, if it is psychiatric based diagnosis, no doctor takes you seriously or will truly investigate your symptoms.

I think this is where a lot of wondergirl’s frustration comes from and so does mine. I KNOW that there is something wrong with me and I know it is NOT one of these trashcan diagnoses. I want a doctor to stop feeding me trashcan diagnoses and do the job that I am paying him for—finding out what is truly wrong with me. I can handle whatever it might be, but I need to know. I can’t fight something if I don’t know what it is. Without a definitive diagnosis there is no real treatment and without real treatment I continue to suffer.

I agree with AnnieB3 that MG should not be a difficult disease to diagnose, but it is. In part this is because every MG patient is different and unfortunately, doctors have a recipe for MG and if you don’t fit every category in the recipe they will withhold diagnosis. Also, a lot of doctors, especially neuros (I’ve found anyway), think they are Gods and know everything. Very few of them do the job we’ve hired them to do—investigate our illness. They go off of their own knowledge and if everything about your disorder is not in their knowledge base, well, they wash their hands of you. Additionally, very few actually listen to their patients and are detailed or thorough in their analyses. To make matters worse, unfortunately, we live in an age where diagnostics are all the rage. Without a diagnostic test that confirms the ailment, doctors will deny diagnosis. In my opinion this is a problem because doctors are more and more relying on tests, which can be fallible, to tell them what their brains should be telling them. Don't get me wrong. I do think diagnostic tests are very important, but they are not the be all and end all of medicine. There comes a point when a doctor needs to stop looking for diagnostic confirmation and start looking at a patient clinically. Doctors need to think and brainstorm about what is going on with their patients instead of waiting for some test to give them the answer. If it walks like a duck, quacks like a duck, and looks like a duck, then you shouldn't need a special test to tell you that it is a duck. Granted a test could confirm to you that it is in fact a duck, but what if the test comes back negative? Would you actually look at the duck and say, well, the test to confirm that your a duck as come back negative, so I don't think I can definitively say that your a duck. Come on docs, start using your brains!

As far as I’m concerned, the DOCTORS, make getting a diagnosis more difficult than it should. As a patient, this is beyond frustrating.

AnnieB3’s suggestions about keeping a log of ALL your symptoms, taking photos of your face, and doing research are all great suggestions. I do all of them. Unfortunately, my experience so far is that the doctors don’t want to see your symptom list or your photos. Nor do they care about YOUR research. YOU are a nobody, THEY are the doctors. Perhaps, I’ve just had bad luck with doctors, but I’d really like to know when my luck will change because it’s been 13 years!!!

AnnieB3’s suggestion to see other doctors such as a plumonogist and a neuro-opthalmologist is also a good suggestion, one that I am in the process of doing. However, thus far, I have found that what the other doctors have written about you in their reports will follow you, even if you see doctors in different fields. It’s medical bureaucracy.

I am NOT okay with not knowing what is wrong with me. But I don’t focus on the “what if's”. I focus on what is true for me. I don’t think anyone should try to “prove” that they have a particular ailment, what if you are pigeon holing yourself? What if you are wrong? Right now I would like a GOOD doctor, who listens to me, looks at my symptoms list, looks at my pictures, isn’t an arrogant know it all, who is thorough investigator, etc… because that is the only kind of doctor that is going to be able to figure out what is going on with me. The problem is that I don’t think this kind of doctor truly exists. I’ve only been looking for him/her since 1997.

BTW, ending up in a myasthenic crisis seems to be what has worked to get some people an MG diagnosis. I must have the worst of all luck because it didn’t work for me. I’ve been hospitalized twice for breathing problems that match an MG crisis and would have been hospitalized at least 2 more times if I hadn’t taken 60mg of Mestinon (without my doctor’s permission) when the breathing problems hit again. Despite the fact that my records clearly state that twice all of my stats (heart rate, O2, etc…) dropped drastically low during my first breathing crisis (they said that this happened when I “fell asleep”, but I do wonder if my diaphragm simply gave out) and that mestinon significantly relieved my symptoms (both breathing & weakness in other parts of my body)----I am still being denied an MG diagnosis.

Can you tell that I’ve simply had it with the medical system?

Sorry to be so negative everyone. Apparently I had a lot to get off my chest.

Sincerely,
Lindie