I'm still undiagnosed, and I'm wondering if you have more normal days or more bad days? If I truly had MG would I be able to tell it every day? I still have some days where I feel totally like my old self. And then that muscle fatigued feeling sets in other days and vanishes either after hours or after a day or 2. I totally question things on my good days.
On that same note, I'm wondering if I have to have all my tests run on my "bad" days for them to be positive!? I'm especially wondering about the single fiber EMG which might be my next test. But also for bloodwork....my ACh blocking abs were 23 where 0-25 is normal. I'm wondering if on a really bad day they would have been higher? And I know I'm lucky, but even on my bad days I can still function, I just really don't feel like it...I want to lay my arms in my lap and just sit there. It's very odd.
Thanks everyone.

You're kind of making yourself crazy now.

Acetycholine Receptor Antibody tests change over time. They DO NOT reflect the severity of the disease. Some antibodies are circulating ones and some are tissue bound, thus the change over time. Can't predict it either.

The hallmark of MG is fatigability, but it is also known to be highly unpredictable. Yes, it does vary greatly.

As far as the SFEMG, it can pick up weakness that you might not even "know" is there. Yes, they should test a weak muscle, but it has been positive in patient's who aren't even clinically weak (that is from an expert on MG).

You could wear yourself out for the test, but be cautious of going too far down that road.

Have you written down all of your symptoms and when they occur? That would help.

Do you know that it takes an average of one year for a man to be diagnosed with MG, but an average of 7 years for a woman to be? Yeah. So before you put your total trust in any neuro, remember that. If it were such an easy disease to diagnose (sexist blinders might help), they could diagnose everyone within a matter of weeks.

MG is a clinical diagnosis (thus the clinical exam) that is backed up with tests. A negative test proves nothing.

There's always the matter of a Tensilon test or a Mestinon trial. Has anyone mentioned that?

Which AChR antibody tests did they do? Did they do binding and modulating? Hardly anyone, including Mayo, does blocking anymore. Do you have your test results?

Try to be patient. You can't know the truth until you know it! Do you read the last page of a book before you read it, too?!

Annie

Sorry your not feeling well.. it is no fun going through something like that and not knowing is more than just a little frustrating!


I personally, never have a "normal" day...well, never normal when compared to my old self.. I now have my new "normal".. and I have had lots of those days.. more of those days than bad.. though I don't label it a bad day until i am pretty awfully weak!

I was very very active prior to getting sick.. and today I couldn't walk around the mall without taking breaks.. i'm coming out of a flare however.. but on good days i don't hardly notice walking however running or any sports are out of the question even on good days..

I have just had to accept what my new "normal" is and learn to be grateful for it.. though that doesn't mean there won't be tears occasionally when my body is limiting me so much.. but again I'm thankful there are things I can do that help

Good luck!

Thank you for that info bny806...that is what I was wondering. I'm definitely not trying to minimize anyone's struggles by suggesting that any case of MG is mild. I just know there are many who have daily struggles to breathe, swallow, and walk and others who seem to have days where they are not "normal" but they are still able to do what needs doing, albeit with a rest here and there. I appreciate your insights. Thank you.

I used to have normal days. But I can only take Mestinon. Others who take IVIG or immunosuppressants do have normal days.

And if you aren't diagnosed or on drugs yet, there can still be fluctuations and "normal" days when you don't notice symptoms. As I said, hormones can influence that.

Have you had your thyroid checked? And please do get your B12 checked! It's a very common deficiency. A person needs B12 for acetylcholine synthesis. And don't accept 400 as normal. Most people need to supplement around age 40. For some, even younger.

Annie

yes, when i am not in an exacerbation i can work, take care of kids and even do some home improvement projects.. but never feel like my old self

As Annie said - hormones are a big thing for me.. I have not had to track my period the past 5 years, as about 3 days before it starts I have a worsening in symptoms like clockwork, and I was also B12 deficient