no Ach
 

No Ach antibodies my go between doc says that this means I do not have myasthenia gravis. And we'll have to wait to see neuro to find out what is going on. And to stop mestinon..... Maybe everything is fine. keeping my fingers crossed.

Sometimes the tests come back neg. Does the mestinon work? if it does then I would ask my Dr. if I could keep taking it.

Hi,
my bloods are negative too, but mestinon is the only thing that lets me function on a somewhat limited level.

If you find you are worse off the mestinon it maybe worthwhile talking about staying on it.

If you have problems with your breathing when you stop taking the mestinon call 911 or 999, depending on what country you are in!

Good luck
Rach

The mestinon makes my eye and face better. Everything else I keep wondering if maybe it's just all in my head. Maybe I just think it's better. That's the honest truth. I just don't know what to think.

it happens!!
 

Cooley, If the double vision is better when you take the mestinon, you should ask your Dr. to allow you to stay on it. Your neuro appt. isn't until Oct. and you shouldn't have to suffer in the meantime. I am sure this is so frustrating for you, but hang in there, we are all pulling for you. Take care.;)

Hugs,
Pat

Hi Cooley!
 

Cooley, There are so many variables here that can affect the results of those tests. These are conditions under which the test may be negative:

• If you have an IgG subclass deficiency. MG Antibodies are IgG. Celiac Antibodies are IgA. Each autoimmune disease has it's own little immunoglobulin.
• If you have been on caffeine, though no studies have "proven" that. Caffeine is a cholinesterase inhibitor, just like Mestinon is.
• If you are at the beginning of the MG process.
• If you are on or have been on Mestinon in the past two weeks. Recent studies show that the effects of Mestinon last longer, after it has worn off (which is only a matter of hours). Mestinon has also been shown to suppress the humoral immune system, which produces antibodies. It acts as a immune regulator.
• If you are on any immunosuppressant drugs, and that includes things like Flovent and Advair.

MG is a clinical disease which is backed up with test results. A negative Acetylcholine Receptor Antibody Test does not mean you don't have MG. Did they run the MuSK Antibody Test? They are working on finding other antibodies that may be involved in MG too.

Did they do an EMG or Single Fiber EMG? RNS? Tensilon Test?

A response to Mestinon, especially over time, is indicative of MG.

An MG expert would not rule out MG based on negative antibodies.

Does anyone ever get tired of this nonsense? Why don't doctors, the ones with "real" medical degrees, get this stuff?

Annie

Hi Annie
 

Ive just got a t-shirt from But you dont look sick it says

"my chronic illness is more real than your imaginary medical expertise"

Im thinking of wearing it to my next neurology appointment!

Love
Rach

Lol..........