Since December 2013, I have had extreme fatigue and muscle weakness in my limbs. Also experience trouble swallowing and shortness of breath. My neurologist was at a loss but decided to try Mestinon. Symptoms have improved some but I now have twitchy eyes and muscle cramps from the med. I was told that 5% of MG patients test normal. How can I just accept that diagnosis without proof?

Hi, Denise. Welcome.

Which tests were done?

Since you're short of breath, have you consulted with a pulmonologist to have breathing tests done, especially those specific to MG such as MIP and MEP? If not, I highly recommend that you do that!

Do you have ptosis or double vision? If so, you can see a neuro-ophthalmologist and they can assess if DV the ptosis is fatigable (which is specific to MG/CMS).

How much Mestinon are you taking? Don't make changes without speaking to your neuro, but sometimes it helps to begin with a lower dose initially. The use of Mestinon can be tricky and too much of it will make an MGer worse. The twitchy side effects might wear off after a week or so. How long have you been taking it? The cramping might be from too much of it.

How long have you had symptoms? Sometimes antibodies don't show up until later in some people. Did they do the AChR and MuSK antibodies?

I would have a hard time accepting a diagnosis without some proof, too. But that doesn't mean that proof doesn't exist. There's also the anecdotal proof of taking a photo of your face before Mestinon and then after taking it, to see if any ptosis of eyelids or eyebrows (or nose) improves.

If your symptoms get much worse, such as not being able to breathe in or out well, you need to dial 911. And if you have MG, you shouldn't be out in the hot weather because that makes MG much worse.

Have you had your B12 level or thyroid checked?

Sometimes it really helps to have doctors other than a neurologist assess your symptoms. It reassures you, and gives you more evidence of a disease. Plus, a pulmonologist is vital to have to periodically check on you. They also know that when you're short of breath that you need pulmonary tests right away, and can usually have standing orders for that, whether you have an appt. or not.

Is your neuro an MG expert?

I really hope you can feel better and have more evidence. In the meantime, take it very easy!

Annie

Thanks, Annie! I am seeing a Neuromuscular specialist tomorrow. You raise some good points as I have not seen a pulmunologist yet. I have had blood tests for every conceivable problem (including MuSK antibodies). But you also raise a good point in that my symptoms started in January and I had most of the tests in February so maybe it was too soon to show up. I will mention that to the doc tomorrow. Thanks for pointing me in a couple of other directions and for the kind words! You take good care of yourself, too.

My first blood work was negative but 6 months later it was positive.
Mike

REALLY positive! Can't you share some of your various antibodies with Denise?

After my second test being positive, as time passed on I became positive for 4 antibodies stiational, calcium, binding and modulational. I'm pretty much a mystery to my doctors. My mother and 2 of her sisters had MG. My sister now has it. I am lucky to not have a crisis yet. I am currently on cellcept and mestinon. They help me make it through daily life nothing more. I am a shell of my old self.
Mike

My neuro told me that somewhere around 10 percent of MG sufferers are negative on all tests. They are diagnosed by presenting symptoms and response to mestinon.

These are also Symptoms of Lambert Eaton
i started with weak muscles, weak diaphram and knees giving out as well as a hard time swallowing
a good neuro would also check you for Lambert Eaton Syndrome
and also get a lyme test and a western blot test for lyme as well.

blood work and the EMG confirmed mine..



The following tests may be ordered to confirm the condition:

blood tests: to look for antibodies against VGCC (anti-VGCC antibodies)
electromyography (EMG): to test your muscle fibers by seeing how they react when stimulated. A small needle is inserted into the muscle and connected to a meter. You will be asked to contract that muscle, and the meter will read how well your muscles respond.
nerve conduction velocity test (NCV): your doctor will place electrodes on the surface of your skin covering a major muscle. The patches give off an electrical signal that stimulates the nerves and muscle. The activity that results from the nerves is recorded by other electrodes and is used to determine how quickly the nerves react to stimulation and how healthy they are.

Hey, Denise. Have you heard anything from your docs yet?

Annie

That is what the specialist in the hospital told me. He diagnosed me with Tensilon but all other tests have been negative. The problem I am having is that no outside neurologist will treat me. Apparently they don't believe in the 10-15% negative MG.