Hi, Moortje. Welcome!

I find it ironic that you are in the country of the man who invented the SFEMG, and yet you can not receive proper care!

http://www.sfemg.info/Team.aspx

How long have you had symptoms? It might be possible that you have a CMS (congenital myasthenic syndrome). Or MG. Or LEMS.

I'm sorry that you weren't taken seriously. I laughed out loud when you said that the doctor said that it wasn't anything special. I wouldn't consider MG to be "special" either!

Antibody tests can fluctuate. There are both circulating antibodies (found in the blood) and tissue bound antibodies (busy destroying tissues). A patient can have a high antibody level and a negative SFEMG or have no antibodies and have a highly positive SFEMG (according to an MDA director/MG expert I saw).

It seems as though your weakness does fluctuate, is the right? That's most indicative of MG/CMS/LEMS.

MG double vision is called "binocular," and, when you close one eye, the double vision goes away. Have you tried doing that?

You can see a neuro-ophthalmologist for tests to determine if you have fatigable ptosis (drooping eyelids).

I highly suggest that you see a pulmonologist as soon as possible! I'm frankly very concerned about your breathing. You sound as though your oxygen saturation could be low. Have they ever checked your O2 levels with an oximeter?

What about pulmonary function tests, including MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure)? Those tests show how well you're doing at breathing in and out.

A pulmonologist can also do an arterial blood gas. They might do an overnight oximetry to see how your O2 is while you are sleeping. It can drop dramatically in MG patients who aren't doing well (or in sleep apnea).

To say that you don't have MG simply because you don't have positive test results is nonsense. Did anyone say if you are clinically weak, after a neurological exam? MG is a clinical diagnosis backed up with tests.

Do you have copies of all of your test results and doctor notes? If not, get them.

Stay the heck out of the hot weather, because that can make MG much worse! Some drugs can, too. You can find more info here:

www.myasthenia.org
www.mdausa.org

You need more help. Not being able to swallow, breathe, or move well is an emergency if you have MG. You can't know for sure how badly you will become or how quickly that might happen. Here in the US, we dial 911 for an ambulance to get us (if a MGer is smart, that is!).

They can check your O2, do an ECG (hypoxemia is hard on the heart and brain), do an arterial blood gas, breathing tests, etc. In case an emergency room doctor stares at you, not knowing what MG is or what to do about it.

What else can we help you with? I really hope you will receive more care soon, and have more tests to better define what's going on.

Annie