I asked my Neuro, and he advised me to have it. I thought about it lots, and decided I really don't want to go through a bad flu, so had the vaccine.
I'm with Lizzie, we each know our one body, and with that as well as advice from our Neuro/GP should decide(not that it makes it any easier.)

I had the flu shot in one arm and the pneumonia shot in the other arm on the same day and had no problems. I am not going to get the HINI vaccine, though - too nervous about it. My regular doctor wants me to have it all - he is worried because of the breathing problems I've been having this year. I agree with everyone else, listen to your doctor and your body and make a decision accordingly.

I've been reading all the posts, but am out of town again at my daughter's in Richmond, VA, and not strong enough to be posting - but am keeping up and thinking and praying for all of you!

I think the problem of H1N1 flu shot or not is partially based on the fact that they are 2 different kinds of H1N1 flu shots: one with an "additive" (I'm not sure whether it's the right word) and one without...
The objective of the additive is to boost the effect of the vaccine and this type of vaccine is not recommended for people like MG'ers (most likely under immunosuppressants) unfortunately, it is far more frequent than the other (without additive).
It is thus highly advisable for those of us who want to get the H1N1 flu shot to know exactly the type of vaccine you are getting, otherwise, skip it!
Maurice.

Hi Brian, this is why the one expert said "The only this predictable about Myasthenia Gravis, is it's unpredictability." (two years ago, at the MG conference"
Not often, but some Neuro's will okay the flu shot, but many don't. I really have come to believe that it all depends on their personal experiences with their patients.
My Neuro is a Neuro Muscular Specialist, Has many many MG patients, and is a director of his cities MDA. But even among MG specialists, there will be verying opinions.
It's one of the reasons it's so important to know your own body.
How long have you've had MG? And how bad?
Much Love,and prayers
Lizzie

I've had it for two years now. How bad depends on who you ask I couldn't eat very well and lost 140lbs due to MG, but my limbs are not severely effected.

My current neuro is a generalist, that's why I went to see a MG specialist last week. He's an associate professor of neurology at the University of Western Ontario. He researches MG, teaches other neurologists and carries a practice through the University (teaching hospital). He was the medical editor for You, Me and Myasthenia Gravis ( http://youmeandmg.com/ ) Me, I'm going to believe whatever the man has to say about MG.

That said, You and your neuro know you best. If your neuro says you shouldn't have it, then you shouldn't have it. If you feel your MG is not very well controlled (i.e. it doesn't take much at all to push you over the edge to a week on the couch), you shouldn't have it. For the others who are wondering, I passed along the information provided to me by Dr. Nicolle.

Hi Guys!

I had both shots, the H1N1 and the Flu vaccine on the 29th, I have already been vaccinated for the pneumonia one in 2007. My doctor said it was safe for me and I made sure I did not get the nasal spray H1N1 since that is the LIVE virus. I haven't had any problems yet and it has been 3 days since.

A word of caution, the H1N1 does burn when it is injected.

I am so used to needles to where I only make a face SOMETIMES, but I did say OUCH when the nurse inserted it.

I hope everyone is doing well,

Stephanie

Brian, It's great you have good communication with your neuro, and you have faith in his knowledge. That's a huge step in the right direction.Too many people have gone for years with an uninformed Neuro. And Myasthenia is a crazy disease, and it can take a couple years to really figure out all the signs our bodies will give. And then just when you feel as though you have it all figured out, wham...something new pops it's ugly little head. So being able to have faith in your doctors knowledge is truly a blessing.

Working together with your neuro is so important. It's a team effort. I never had the problems most people have with diagnosis, or with getting a good neuro, but I've experienced it in other areas, and it's not fun.

When you do get the flu shot, please watch your body carefully for signs of breathing issues, feeling more fatigue than normal. My guess is that your neuro hasn't had many of his patients go into a crisis from the shot, and I pray that continues. It's an awful thing for the paitent, and the doctor to go through.
I suspect you'll be fine, otherwise, your doctor wouldn't allow you to have it.
Please forgive some of us for being so concerned when it comes to getting the flu shot.
As some of us have had life threatening problems, and don't want to see you go through it. We've made it our buisness to educate others with MG on what can happen.
I for one, can't ever sit back and not say anything. But it does sound like your neuro is diligent, and will keep and eye on you. I'm sure he's given you a list of things to watch for...a "just in case list". I'm always getting those. Just tuck them away in a folder to pull out when you need them.
Love, and best of wishes
Lizzie

Brian,

You lost 140 lbs? That's a crazy amount of weight! Over what time period- two years?

I think that I lost about 20 lbs, but my weight is back up again, thank God...I only have minor problems with swallowing, though...Eating causes me problems because of a weak tongue, mainly...

Did they ever suggest giving you a feeding tube?

Yeah, this flu shot is throwing me for a loop...I suspect that I might be able to handle it since I get infections like it's no one's business already on account of the prednisone, and I don't go into crisis from those, although my speech goes up in flames...

I think that I will ask my GP, but he seems to always agree with everything my neuro. says...

I lost 140 over 10 months last year (between Jan - Oct). I'm back up about 10-20 now though

Thank you everyone again for all your responses. You guys are the best!

Big Hugs,
Pat