Looks Great, Heather!

Good Job!!!

[size=14]   My doctor was writing me a letter (from the TMS "Emergency Room Protocol" documents) to carry with me to the E.R., when she discovered a contradiction about muscle relaxants.  The text on page 19 regarding tolerated muscle relaxants and ones to avoid is the reverse of the chart on page 22 regarding muscle relaxants.  

Does anyone know which are really the muscle relaxant "Drugs to Avoid" and which are the muscle relaxant "Drugs Typically Tolerated"?  Be sure to mark this problem in your packet.

I heard back from Valerie Slee at TMS.  She said to please change the chart on page 22 of your TMS Emergency Protocol packet to say:

Pancuronium and vercuronium are typically well tolerated.[/font]

AVOID Atracurium, Doxacurium, D-tubocurarine, Metocurine, Mivacurium, and Succinylcholine.

These were mistakenly reversed!!  They will change their posted version as soon as they can.

I wouild also like to mention an other thing we should all do that will help us during an emergency. An EMT told me to do this!!  I called our local 911 EMT call center and gave them information about me as a "patient with special needs". Now, if I call 911, this will pop up immediately and they have my information before they arrive

I also called our local electric company and let them know I am in a life threatening situation if the power goes off (In summer , the AC) so if there is a power outage, they will put my residence at the top of the list for repair.
Hugs,
Ramona

It would be funny if it werent so serious LOL..The EMTs and Hospital staff are recognizing me and remembering me--that helps.. and they grab the notebook to pass around.. I love it that they are learning.. and it helps my episodes be less severe with their knowledge base growing. Thats the best part.
Hugs
me

In the case of a SM episode, Epi stabilizes your mast cells so they aren't dumping mediators into your bloodstream that cause the tachy in the first place.  Actually, I do notice an initial "buzz" with the epi, but it very quickly slows everything down and shuts down the episode.  After using epi, you must lie down and remain quiet for a while, which will reduce the chances of a heart problem.

Now, this is all assuming that what you have is SM or MCAD/IA.  If carcinoid syndrome and other similar problems haven't been ruled out, then you might not want to take epi, as it could cause worse problems if you have carcinoid.  If you have been diagnosed SM or MCAD/IA, other things have been ruled out, and you feel like you're going to pass out, the epi can save your life.  

If you have a good mast cell expert doctor, you might want him/her to explain more about epi when you're in there.  Of course, it's a trade-off because passing out isn't so good for you either.  There are several other things you can do if you feel faint.  One is to squeeze your knees together.  It raises the blood pressure.  You can also lie down with your feet elevated, or you can sit down and put your head between your knees.

When you first feel the episode coming on, take extra H1 and H2 histamine blockers with a glass of water, and then sit down.  You might head off the faint feelings.  I know what you mean about symptoms coming in "waves."  It's really awful!  I usually take 1/2 mg. Ativan if I feel afraid of what's happening.  Of course, check with your doctor before trying anything new.

Here's the best one I've found:

http://www.nejm.org/doi/full/10.1056/NEJM199306033282204#t=articleTop

Although this article is from 1993, there hasn't been a lot of research about this antibody!  I've seen one article about asthma... nothing about anaphylaxis.  It also shows up in some people with lupus and scleroderma (two other systemic autoimmune disorders), but nobody is sure why or exactly how this antibody functions in the human body.

Heather