Hi all,
Another question, after reading everything on the board I just wondered , I know to go to the er if the symptoms warrant a crisis.., but does you small town community hospital know what to do., ??????

What a GREAT question! I live in San Antonio, but sadly a lot of people really don't know all the much about MG, so I would go in, but ask to be airlifted to a larger hospital. Do you live near a big town?

If you EVER have problems breathing, that warrants a trip to the ER - no doubt about it!

There are lots of meds that we cannot take due to the MG, so make sure EVERYONE knows that you have it - get a bracelet or make sure EVERYONE knows you have it before you go in...........

Hope this helps!
Big, big hugs!
Erin

Whirlwind, That is a very good question. It is a good idea to go there when you are feeling WELL and ask the staff what they would do for an MG crisis. Ask them if they do breathing tests, arterial blood gases, if they contact your neurologist and/or pulmonologist, etc. Ask if they have a writeup for their MG crisis procedures.

When I had my MG crisis, the staff of my somewhat large city hospital screwed up big time. They did not put me in the ICU, which is where someone having a crisis should be. When your breathing is that bad, it needs to be monitored constantly by a nurses station. Usually neuro units do not have that capability.

And they now have three options to handle an MG exacerbation, as far as breathing goes. You can have oxygen, which you should have right away. They can do Bi-Pap to help you breathe. And lastly, they can intubate you. It's great if they can avoid intubation by using Bi-Pap and plasmapheresis or IVIG.

Steroids are not really considered to be the best approach to a crisis because you can temporarily get worse before you get better.

Just call the hospital, find out who the right person is to talk to and ask lots of questions.

Annie

Wow Whirlwind!

This is an excellent question that I guess we should all remember to mention to all "newbies".

I live in Denver, CO and 3 of 4 hospitals I've been have in an awful lot of people that wouldn't know what to do. Luckily, the Masthenia Gravis Foundation of American has several brochures available for MGer's and one of them is designed to stay with you. It includes information for health care professionals. Here's the link to that brochure:

http://www.myasthenia.org/docs/MGFA_...rgencyMgmt.pdf

We should all have one on us at all times, I think. Just in case.

MGFA has lots of good information. I encourage you to visit their website and just explore all the different tabs, etc.

http://www.myasthenia.org/index.cfm

Hope this helps you!

Love, Becky

I just came through a Myasthenic Crisis. When I went to the ER and told the triage nurse that I was having a Myasthenic Crisis, she looked at me like I was speaking another language. I waited in the ER waiting room for 4 hours while my breathing deteriorated. Once I was back in an ER bed, I was seen by several residents and hospitalists. I asked each one if they had ever treated Myasthenia Gravis. They all said that they had only read about it in school. This does not inspire a feeling of confidence when one is laying in a hospital bed trying to breathe.

Fortunately, I was admitted to the ICU and a neurologist was called in. I was put on IVIG and the crisis passed. But your fear is certainly a legitimate one.

Call your local hospital, ask them, just how well prepared they are for a person with a rare disease such as MG.
Now, if you have already gone there, and had a bad experience, call the hospital, and speak to the person who deals with these things...every hospital has one.
Tell them in detail, and then say you want something done. They will more than likely have a alert for training for your disease.
Tell them, you want a progress report, and if you don't get one with in 6 to 8 weeks, you will call your states department of health, and issue a complaint.
The Board of Health, "HAS" to do a thorough investigation.
Actually so does the Hospital, when you call and complain.
You can complain and still be nice about it. I had to once, when I had an emergency, It took 3 hours to see a doctor. I was brought in by an ambulance. The EMT was so worried, he wouldn't leave me until a doctor came and looked me over, as my breathing was awful.
they didn't even so much as give me a mestinon when i asked for one. Nothing, nada..
Anyways, to make a long story short, I had the Myasthenia Gravis Association send the hospital a packet. The investigation showed that there needed to be severe improvements.
Know your rights!
And again, you can complain with a calm voice, but serious tone. Freaking out, is never taken seriously, even though it is warranted.
This is a problem for so many of us. Not right.
Hope this helps some.
Love Lizzie
P.S. You can have the MGA send a packet to encourage them to learn more too.

Great suggestion Lizzie. I think I'd better get on that with Death - umm, I mean PLATTE, Valley Hospital. This forum is the best. See, I wouldv'e never thought to be proactive on this and make them learn the possibility exists. And I know there is at least one other Myasthenic near, because my pharmacy, in this relatively small town had Mestinon in stock! Wish they could tell me who it is, so we could compare notes on docs in the area.

Hey Leaningin! It is soooooo scary to know that very few "health professionals" know anything about MG

As you said, it does not inspire confidence @ all!

Thank God you made it through your crisis!

What meds are you on now? What are they doing in order to PREVENT another crisis?

Big hugs!
Erin