Oh, boy, do I know and feel your pain and frustration!

You should see that ONE photo of an MG patient on that TWO page spread in their medical books. Okay, sometimes it's two photos. It's an exaggerated photo. And they get the oddest looking people (no offense to them) for the photos. I also think the photos are decades old.

MG and, therefore, ptosis, can be anywhere from mild to severe to dead. My ptosis didn't get to the point of not being able to open my eyes more than a slit until my MG crisis. Some people have that happen daily. Idiots.

Students are taught in medical school that what they are being given are the "right" answers. Period. If they were taught all of the variables of pathophysiology, diseases, presentation and treatments, they'd be in school for 20 years. That's why there are specialists.

If one of those four doctors who said mild ptosis is not indicative of MG is a neurologist, they need to go back to school.

Have you seen a neuro-ophthalmologist? Sorry, I can't remember. They have objective tests to figure out if you have double vision, if it's the binocular double vision of MG (goes away when you close one eye) and if your eyelids and/or eyebrows fatigue/weaken.

I took a photo of my face before my MG crisis and a couple of weeks after treatment. I looked like I'd had a facelift. Before, my entire face - even my nose - drooped. I like to call it nose ptosis. What excuse would all of your doctors give for my nose to droop? Humidity?

So, if you haven't already, take some photos of your face before and after having Mestinon. Make sure the tilt of your head, the lighting and camera exposure are the same each time.

This is all so incredibly stupid that I feel like taking another shot at enacting new legislation. This behavior by doctors is ABUSIVE. Workers are protected from abuse. Children are too. Why aren't patients protected from abusive doctors?!! Medical boards often side with the doctors when faced with such allegations. No, they shouldn't have an unfounded complaint that turns into a "witch hunt" but they have got to stop hurting their patients. They've sworn not to, right? "Allegedly."

Call your insurance company and see if they have any patient advocates.

Hi seishin

Even the practitioner who took my SFEMG back in September was totally convinced I had MG symptoms during the actual test even though the test turned out negative.

The neurologist on the other hand told me I needed at least ONE positive test before I could get a diagnosis and Mestinon wasn´t going to cut it since it can work like a placebo effect.

I can go back for a tensilon test to´prove my MG´anytime - but then, who knows, I´m quite sure I could manage to fake that one as well I was told I could continue taking Mestinon as placebo effect
(He did not believe it could be working when only taken on a symptomatic basis)

Luckily I´m feeling better and will of course be thankful for that quite soon.

Anacrusis

PS
I so dearly hope your upcoming SFEMG is positive - it will make life much easier. Then we can ban the test after you have had it

A negative SFEMG is like coping with another disease on top of the one you already have

I figured as much. Earlier edits of my post indicated a similar conclusion.

It comes back to that concept "curiosity of spirit". I work with cancer patients, and when I encounter a rare cancer, I get intellectually excited by its uniqueness and try to learn more about the cancer. I'd think these doctors SHOULD be excited to see me! It should make their month!

I want a complete role-reversal where the doctors are going all out to schedule an appointment with us! Given MG's rarity, doctors should be climbing over each other, begging for a chance to stake their claim at diagnosing this & being involved first hand. It'll be like one of those reality show spinoffs,.. "Who's deserving of the rose? Who's shown me the most respect, heard me, demonstrated a willingness to stick out their neck, do research & ask questions? Who recognizes nose ptosis when they see it? Okay, You! Third from the left! Step forward! You win 'Beee Myyy Doctorrrr!!'"

He needs to go back to school. 'Nuff said, I can't talk about that man.

Thank you, I'd not heard of this. I've made a note in my MG bible to revisit it.

Hahaahahaaaaa!!!!

We're in mind-meld agreement. The fact you're already such an advocate for us on the board, and with your wealth of knowledge,.. that would be beautiful to see.

I haven't contacted this group yet, but I hope they can do something to help: Advocacy for Patients with Chronic Illness
http://www.advocacyforpatients.org/

Also, a friend has directed me to ADAPT. In the 80's, they chained themselves together during rallies fighting for the passage of the Americans with Disabilities Act (ADA). They are also very active in Medicaid reform. www.adapt.org

MG'ers would make the perfect protestors for reform. The Powers would have a heck of a time dragging away our limp bodies....

I hope the upcoming neurologist is of a similar mindset.

Grrrr!!!!

Yes, let's!

The emotional strain is the hardest part.

Couple of other things, Seishin

It took a year and a half to even get an SFEMG because the first test was a repetitive nerve stimulation test
and they called it a SFEMG by accident in my journal.
Also I slept in wool underwear the night before the test (it was September) I woke up at 3 a.m.
Managed to ´enhance´ lots of already existing myasthenic weakness with just heat and lack of rest.
Was difficult getting up the stairs in the hospital, weak legs, weak arms, choking on spit during test, voice changes whilst talking to practitioner that they remarked on, mild ptosis which is rare for me.
So I was perfectly primed for the test. Nevertheless...

SFEMG of frontalis above the eye

Was still negative

Annie may have figured it out for me. Somewhere on this board (this thread? a different?), she mentioned an antibody test for congenital MG, and I believe that's what I have. I've had typically mild symptoms of MG since at least age 3, as well I have Autoimmune Polyglandular Syndrome (APS) Type 3C, which is hereditary & closely tied to MG.

I've mentioned APS and the "age 3" business to every doctor I've seen, but they were as ignorant as me in the sense none of us knew there was an antibody test for it.

KNOWLEDGE IS POWER!!

There is no antibody test for CMS because congenital myasthenic syndromes (a group of over 100 mutations) is a genetic disease, not autoimmune. There are blood tests to look for the mutations.

Congenital MG simply means that you've had autoimmune MG since birth.

CMS is "congenital" because you've had your "genes" since birth.

CMS and MG have different causes but can have similar symptoms.

Some people with CMS have too much acetylcholine or none at all. Others are like MG and don't have enough.

Does that clear it up?

I would like to say "it's cleared up", but I am still a confused puppy.

Having the symptoms all my life is muddling it in my head. I'd like to think a CMS blood test could pick this up. But I guess the APS connection makes MG the more likely culprit.

Back to square one (although I'll still ask the neuro about the CMS blood test).

Since I have been home from my fall, I have been calling the SFEMG facility everyday for a cancellation since i have to wait on the list until June. Well, it must have been my lucky day. Someone cancelled and I got bumped up to Feb 26th. So I am going to use the above list to prepare. I am seronegative so this test is crucial for my diagnosis. I just started mestinon. I am afraid they will not progress with my treatment -- cellcept, thymus scan etc -- unless they get some positive results. Should I ask them to repeat the antibody test? They were last done in early November and were negative.

thanks, kathie

First I tested positive for modulating antibodies then neutral and then negative, so you might want to take the test again. When I tested negative I was drinking a lot of caffeinated sodas. The last test was positive for modulating antibodies and the test I took was the anti ach receptor antibody test.