Hi Steph,
I know we talked back and forth the other night regarding my posting on my pulmo visit. Just wanted to say welcome to the group!!! I know you'll love it here. This forum has helped me so much and we have so many knowledgable people. I can always get plenty of feedback on any question I have.
Take care,
Kendra

Hey Pat,

Did you ever bring up the cholesterol medications to your doctor? Just wondering what they said if you did...

Ttys!
Nicky

That's terrific news Pat! So glad everything checked out OK.

I'm fine - but noticing my eyes and tongue are getting wonky on occasion...which is new....and weird feeling. When it happens, I just take more Mestinon and that works. I'd be concerned if it wasn't for what I've learned on this site!!

I see neuro on Monday and will probably just be told to up the Mestinon.

Thanks for asking...and glad your tests found happy heart and lungs!

Sue

Nicky...I did ask the cardio about taking the Lipitor and he said with my family history and my high cholesterol the benefits from taking it far out weigh the risk. I see both my pcp & neuro next month and I'll ask them as well. Thanks for asking and I'll let you know.

Sue...Sorry to hear you have a few more little symptoms going on, but glad the mestinon is helping. With this crazy disease you never know what new little symptom will pop up out of the blue and sometimes go away just as fast as it came. Those are the ones I don't mind so much. It's the ones that hang around that bother me. lol

Take care and have a nice day!

Hugs,
Pat

Hi, You've gotten some good advice, and I can't add too much, except, I'm an MG'er on Oxygen, not twenty four seven, but during exercise, and sleep, and right now, cause I went shopping with my Mom, and walked too much. (I'm 45)
MG has weakened my lung muscles.
Also, I need to ask you if they have done an echo cardiogram on you to check your pulmonary pressures. This is extremely important, I can't stress this enough. Pulmonary Hypertension should be ruled out, and right away. Please ask them to check.
Please let me know what they say.
Oh, and please please don't be afraid to ask for this test. This is your body, and your life, and your health. I'm so worried about you.
Oh, and welcome...
Love Lizzie

Hi Lizzie,

Yes that is the first thing they checked by doing a heart catherization and everything was fine including my arteries.

The reason I am on oxygen 24/7 is because my saturation levels drop rapidly with any movement. Technically I should only be on oxygen once I stand up, but since my sats drop so quickly my doctor wants them to be 100% or 99% at all times. They have told me that if it is too much while I am at rest I can reduce the flow or take it off.

Thanks for the advice though. It is nice to hear about other people going through my same problems since it is soooo rare.

Steph

Although it's not fun having breathing problems, I'm so relieved that you don't have Pulmonary Hypertension. A heart cath is pretty absolute, so I was so happy to see that's what they did for you. Mine first showed up on an echo, and then through a heart cath.
Using Oxygen is a pain, but am grateful it's there. Do you have an Oximeter? If you don't, it might be a good idea to check into getting one. I have a BCI one, and what I did was take mine into my pulmos office just to check it against his. Here's a link. (in the link, I have the yellow one)
http://www.portablenebs.com/tripleoximeter.htm
Remember anything above 90 is normal with Oxygen. And ofcourse no ones oxygen levels should ever go below 90.
I'm so thankful that PH isn't your problem. Do they have any idea why yours is dipping so low?
Some of the portable tanks are getting lighter, and are much easier to hang off your shoulders.
You are in my prayers.
Love Lizzie

Hi Lizzie,

Sorry for the delay but I have been feeling MUCH better. I realized that rest was part of the main problem I was having. But to answer your question, I do have an oximeter, spo 5500, and fortunately my sats haven't dropped under 90 in over a year. This is probably because I haven't been working for that long and the only exhausting activity I do is moderate excersising.

As for why it dips so fast is the same reason why others with MG can't walk up a flight of stairs, they're just too weak. I have noticed that without oxygen my sats drop from 100 to 96 when I walk 50 feet, but with oxygen the lowest it goes is 98.

Thanks for your concern,

Steph