Dr. Suess

"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"

Monday, April 04, 2005

Pearls and Dreams

Pearls and Dreams

OK, next time, I do research before the test not after. Maybe not. I'm tired of research, tired of tests ... maybe it's just as well. I'm fine now.

The echo tech was very chatty, very friendly, very very sweet. Would love to take her home with me. About 10 minutes into the test, she got very very quiet, and then took out the video out of the machine, got up and got a blank one, and said I needed my own video recording. The other one, was one for the full day for that doctor's patients. Not sure it was good that I needed my own. I've had a couple of echo's before, I saw one valve that was doing a fair amount of bouncing around when she had the sonogram thingy right over the spot on my chest that hurts the most ... hmmmm. Some of the rhythm sounds she recorded sounded freaky.

Ok, before the next part, please know that as scary as it might sound, after the first minute or two & I heard my neuro's name shouted over the phone, I was not scared. I'd been in myasthenic crisis many many times, I knew they had the rescue meds & knew I'd be ok. It was very very surreal. It was extremely surreal, but I wasn't scared at all, perhaps I should have been, but I wasn't.

My MG and thalium tests ...do NOT get along ... I could not tell you if the test was painful. Too busy watching the chaos around me from a body that would not move, talk ...or evidently breath judging by the number of people who were yelling at me to breath. They had to call my neuro in the middle of it.
I can remember being completely unable to move even my eyebrows, barely able to keep my eyes open, but wanting to so they'd know I was awake, them yelling about my blood pressure as they were taking it from both arms and one leg (without latex free cuffs because they didn't have time to get the extra latex free cuffs) and yelling at me to breath. I had this very odd sense of calm when I realized they were calling my neuro.

On the crash cart before the test, I'd seen the name of the IV form of mestinon, can't spell it, but know it when I see it, so I knew they had it and had it in the room. So they had the right med, they were calling my doc and I was just watching the chaos with this very odd feeling ... wondering if they thought it odd that it was MY stress test and they were the ones stressing out.

Hind sight, I'm VERY glad that my son asked the children's ministry to pray for me yesterday !!!!

Anyway, I won't know more till the cardiologist gets back with me. The only thing they've said is "if we ever do this test again, you'll be done as an inpatient or 23 hour admit" .... uh ... yea!
I'm just feeling lucky they let me go home!!!!!!!

For anyone curious ...no, Don did not take me ...no ... he didn't ask me how it went even after I fell coming up the stairs when I got home and dropped the half full gallon of milk. I told him that if I have to have another one it has to be done in patient. He hasn't asked me why.


  1. Oh dearie....here is a big hug for you: ((((((((HUG))))))))....so sorry! I hope things are better soon! Do your homework...with internet it is pretty easy to research...and see what you might be able to do for yourself too. Doctors poke us so FULL of meds! Then the meds give us trouble...and round and round we go! I am TRYING despertly to get my blood pressure down so I can get off the meds...so far...well, not so good...but I am going to keep on researching...and I encourage you to do so too!

  2. Elizabeth, 30 years ago, MG was fatal. Not just sometimes fatal. If you got it in more than your eyes, it was fatal.

    There were no natural treatments that worked. It's one of the oldest known neuromuscular/autoimmune diseases, if not the oldest. Yet, there was nothing they could do for it but watch people die from it.

    Even Dr. Weil (MD turned Naturpathic doctor) says if you have MG, stay with modern medicine, there just isn't a natural option, and most natural things will make it worse, not better. Most will boost the immune system, which increases the immunity that damages the muscles.

    I've personally known 3 people who've tried naturepathic medicine to treat their MG. One was the founder of the Oklahoma chapter of the MG foundation ... and she died because of the natural treatments. The other two, also died.

    I simply am not willing to take the risk. The meds that I am taking are high risk drugs, they do carry risks in and of themselves, but ... the risks before they were developed were a 100% guarenteed death sentence.

    There have been many many myasthenics that I've been in contact over the years, all over the world, thanks to the internet, many of them have tried alternative ways ...and not one person tries them for long before winding up on a respirator. No one. We have a list of 380 people, a survey was sent out, of the 380, 328 repsonded, of those, 267 had tried alternatives. Of the 267 that had tried alternatives at the time of the survey, 260 had had complications of their MG, 243 of them a respirator. Of the remaining 7 that did not, within 6 months of the survey, they emailed the person who did the survey saying to change their answers, each one of them wound up on the respirator and were now using the 'standard medicines'.

    For MG, it's just too risky to not use the chemicals.
    Even those who've tried some of the alternatives in conjunction WITH ..still wind up BOOSTING the bad part of the immune system and having complications.

    There might be many many many things that alternative medicine works for. Myasthenia Gravis is not one of them.

    Thank you for thinking about me though, I do appreciate the thought, and will be praying that it works for well for you!