Did they give you a reason for the hearing loss? Did you know that people with undiagnosed Celiac Disease can have that happen? Have you been tested for that?

No, the diuretic would not "interfere" with the PFT's.

It's just that some drugs make MG worse. If, and I mean "if," the diuretic makes MG worse and you have MG, your PFT's will be worse. But it wouldn't interfere with results. Make sense?

This is going to sound stupid but it's not. Sometimes Meniere's or just plain old tinnitus or vertigo can be caused by pinching of nerves in the spine. My Mom had vertigo, had physical therapy and was better after a few sessions. She hasn't had it since. Just an example. Doctors often throw drugs right away. Not that drugs aren't useful but it's easier than trying to figure out "why" something is happening.

The hearing loss is due to the Meniere's disease they think. I go to a chiropractor already who is great. I have wicked tinnitus and a gair amount of dizziness but I haven't had vertigo since last July I am happy to say. . .

I have been tested for Celiac, I don't have that.

I checked the heartrate issue this morning. 60 at rest and 111 when I stood up.

debra

Does the ptosis and weakness occur with your migraines?

What I do when I have a lot of questions about what is going on with my body, I write it down, and ask my doctors about it, and get detailed information from them.
Take some one with you, so you have another person there to help ask questions, and to help remember the answers.
It seems to take forever to figure it all out, but it sounds like your doctor is on the ball, and it's so important to get accurate info from your doctor.
Also, another way to get some good info, is to visit as many internet sights as possible relating to Myasthenia Gravis.
What I've done is printed out info, and then had my doctor read it, and see what he thought about it.
There are some great sights out there that can further help you. Please please check them out.
When I was first diagnosed,I was told to educate myself in every aspect of this disease, and really it has helped so much.
And don't be shy about asking what other MG'ers feel when they do certain activities, and such.
You can write me any time, and I'd be more than happy to help in any way I can.
I know you're in a whirlwind right now, and I know how crazy it can feel, so you hang in there.
Love Lizzie

Debra, That's quite a jump in heart rate for just standing up. Usually the body can adjust itself and will not have a jump higher than 30. Usually, according to medical sources, it's a lot less - like a 5 - 10 increase. Make sure you let your internist know of that.

I hope you get answers soon.

Annie

Jaimee--I have the ptosis and the weakness all the time and the migraines only about 1 x month right now. . .

Lizzie--Thanks. . .I am trying. It's a lot to read and take in, especially while on an emotional rollercoaster but I am working on it : )

Annie--I notified neuro and the test results are still not in today but they are expecting them any time. They want to see them before they order anymore tests but they have it all down.

Yesterday, I lost the ability to walking the afternoon and it lasted until morning--definitely my worst day yet. And I could not even lift either leg off the couch. I cried a lot. It was a very bad day.

At this point, I am hoping for a definitive answer so we can move forward fast. I am really scared.

debra

Debra, You couldn't lift either leg off of the couch? How long did that last? No wonder you are scared. Were your arms weak too? Was it hard to breathe?

If the answer is yes to all that, you probably should've gone to the ER. The inability to move a limb is a sign of an MG crisis. It doesn't matter if you don't have a definitive diagnosis yet. Please go in if that happens again.

Annie

I don't mean to be confusing . . .I mean I could not lift either leg in the air off of the couch to test the strength which we normally do each evening. They were not paralyzed or anything. My right leg was the main issue and the knee would not hold. It had no sign or symptom, it just would not hold any weight and I would just fall with no warning.

My arms tire easily with repetitive motion but I have never tested them except that one fatigue test where you hold them out for a minute or 2 and I couldn't do it. They dropped before time was up and I was breathing heavy. This was a week or so ago.

I am breathing ok still thank goodness.

debra

Well, when I had my crisis, I couldn't lift my legs up either. I still think that is worth calling your neuro about. Don't dismiss this kind of situation. In MG, it can get weak so slowly that you don't actually notice. Then other times it can tank rapidly, especially when you are as weak as you described. If it got to the point of your legs being so weak they were "paralyzed," you would probably be near death!!!

I'm not being dramatic. MG is a fickle disease and will turn on you quickly. If it happens again, call your neuro or go in to urgent care. Please.

Annie