Wow Annie, you are awesome. Great info you have posted. Are you sure your not a Dr? You seem to know more about things then they do..LOL

Wow.. Thats a lot of information. Thanks a lot Annie, for starting it and the rest for adding more info! Can totally understand what you're saying about getting a good doctor. We're so in need of one!

Thats a lot to take in, and I sure do hope you're all feeling alright now! I wanted to give up on all the tests sometime back as there were just so many to do, and couldn't see it stopping anytime soon. But as all of you have put it, its necessary to keep things in check!

This is a very important subject, and I am so glad to see Annie bringing it up here.

Another crucial factor is electrolyte status. I've noticed that many here use Prednisone at times, and this drug can seriously lower potassium and magnesium levels.

When this happens, cardiac arrhythmias may occur, and blood pressure may go up. If you use any other drugs, like methadone for pain, SSRIs, or TCAs (tricyclic antidepressants for pain) and many others, you could develop a long QT situation.

Here is a website from the University of Arizona, which specializes in this subject:
http://www.azcert.org/

Some people may be genetically prone to this effect, but others without the genetic tendency can also have a QT event if they become too low in potassium and magnesium.
In fact a very common drug called Propulsid was taken off the market because of this interacting with diuretics which deplete both electrolytes. When doctors failed to respond to the warning letters from Janssen and FDA, it was pulled off the market. It was a very useful drug for GERD and gastroparesis, and nothing remains quite as useful. It was unfortunate, but does illustrate how sensitive the heart can be.

One does not need high doses of magnesium and for MGers here, really high Mag is not indicated. But keeping at the RDA level, will lower BP and help with heart functions considerably.
Chosing foods high in potassium can help too, if you are on Prednisone. One warning sign before the heart is affected, would be excessive fatigue and muscle cramping.
The new revised intake for daily dietary potassium is now 4.5 grams. One quick way to get potassium is with V8 juice. It has about 800mg/12 oz can.

This nutrition site is very good for showing food contents:
http://www.nutritiondata.com/facts/v...roducts/9873/2
This example link is for edamame beans-- very tasty flavorful way to get your minerals and some protein. Them come frozen/cooked and you just defrost in boiling water for a couple of minutes, and they are great in salads, etc.
Search any food, even some processed ones are on that database.

REad and reread your post and was amazed! You see, the same thing happened to me in the ICU -heart stopped a few times and woke up to find a young dr telling me that I my need a pacemaker..............Could not believe how quickly everything went downhill while I was in the ICU - thank God I was there! He really saved my life!

What causes your heart to stop like that? Is there anything that can be done for it?

Big hugs!
Erin

I just know that one of you super smart people will be able to answer this one for me.......I was talking to my neuro - who is also a neurophysiologist - and he said that MG does NOT effect the lungs. So why do so many people with MG have breathing problems?

I have never had that problem until I was so weak that I went into "crisis" mode - then I almost blacked out - scary stuff!

MY type of MG effects my energy level first, followed by the whole wonly eye thing, then the swallowing, etc.......breathing was the LAST thing to go......

I have general MG - is that what the rest of you have?

Can anyone answer the breathing thing? I'ts driving me nuts!

Thanks
Erin

Hi Erin, Here is the short version,seeing I have Pulmonary Hypertension, I can answer this one. The lungs are Not weakened by Myasthenia, But the Muscles working the lungs are, in turn, causing breathing problems in the lungs.
So, yea, he's nit picking a bit, but he's right.
Hope this helps
Love Lizzie

I'm not 44.
LOLOL...Yes I am, must have been in denial at the time. I should have wrote "I'm Now 44"...lolol... OOOhhh..lolol..my mind is going.
Love Lizzie

Every since i've been on prednisone, i've had high blood pressure, my blood pressure is around 140/115. Sometimes I forget to take my blood pressure pill, so that's when it's high. But when i do take it, it's still kind of high 140/90or so. I hate being on blood pressure pills.

Hi, Prednisone will cause High Blood Pressure. Has your doctor said you need meds to control it? You may need some. It's so important to keep blood pressure under control, even if it's pred. induced.
Love and hugs
Lizzie

My cardiologist said to me that the brain (or the heart or kidneys) don't care what causes high blood pressure. In other words, it's great to figure out the cause of high BP but the rest of the body suffers in the meantime.

Tracy, Why do you hate BP drugs? BP drugs are quite complex. Beta blockers aren't good for people with asthma. Calcium channel blockers are relatively contraindicated in MG, as are beta blockers. ACE Inhibitors can cause renal failure in those who have renal artery stenosis. Depending upon underlying conditions, they can either be really great or not. Maybe you should talk to your cardiologist about why you don't like them and look into another one.

Joanmarie and Connie, that is very sweet of you to say. And, yes, I'm very sure I'm not a doctor, nor would I ever want that responsibility. Let's leave that up to people who went through the schooling and know what they're doing!!!

Thanks Mrs. D for adding valuable info to the conversation.

Lizzie, I thought your typo was really funny. It's hard to type with MG and I think the "mistakes" are wonderful.

My BP is doing things like spiking to the 200's, so I'm having some more tests done. And I'm having what is called orthostatic hypotension AND hypertension. Yes, a tilt table test is in my future. I sure hope it isn't an autonomic problem. I'd rather have a pheochromocytoma, because they can pluck a little tumor out of the body and "fix" the high BP. I doubt it's that but who knows. It's very rare.

I'm sorry I didn't reply right away. It's been a hard topic for me to think about, being in the midst of it. I'm not the kind of person who gets scared but this has made me crazy scared.

Annie