[SharS]

I just wanted to check in and let you all know I haven't disappeared again - just feeling really weak and not able to type much. I'm still reading the posts each day to keep up.

I don't know what's going on with me. My chest feels like an elephant is sitting on it and I can't breathe at all if I get up and hardly breathe even sitting. I have to prop up in the bed. My neck is also extremely weak and I have some kind of weird eye pain going on. I did sit outside and sprayed myself with Off mosquito repellant yesterday but that wouldn't effect MG would it?

If I don't get better tonight, I'm going to have go in tomorrow morning and have my IVIG. I was trying to hold out and space them 2 weeks apart instead of once every week, but I don't know.

I get so confused and paranoid about taking too much Mestinon. I think, ok, maybe I'm taking too much (60mg every 3 hours). It's been 4 hours since my last one - thought I would see if it helps to not take it, but I feel even worse now. The whole breathing thing is so scary.

Sorry for the long post - guess I'm a little worried.

[AnnieB3]

Shar, NEVER use mosquito repellant again!!!! Did you know that catnip works just as well?

Those pesticides, and it is a pesticide, acts like Mestinon on steroids. It inhibits acetylcholinesterase and increases acetylcholine. That's not a good thing if you are on Mestinon because you could have a cholinergic crisis. The other thing pesticides do is to irreversibly destroy the neuromuscular junction!!!

You absolutely should go seek out help. At the very least, call your neuro. If you still feel like you can't breathe in, go to the ER right away. Do not hesitate in doing so!!! They need to check your arterial blood gases as well as O2 stats and breathing tests. Tell them that you exposed yourself to pesticides and got worse afterwards.

http://en.wikipedia.org/wiki/DEET

Mestinon kicks in about 20-30 minutes after taking it. It will wear off about 2-1/2 hours after taking it. So you get about 2 good hours of it. If you are weaker off of Mestinon, then it is making you better by taking it. If you are weaker on it, the opposite is true. Make sense?

This is nothing to mess with. You need to seek out help. And stay away from the pesticides; they are not safe for people with MG (or anyone else in my opinion).

I hope you will feel better soon.

Annie

[JCPA]

I agree with Annie on this SharS.

Don't mess around with this. You need to get checked out tomorrow if possible.

Let us know how you get and I hope you get better soon!

JJ

[Pat 110]

Hey Shar,

Sorry to hear you're having a rough time. Not being able to get a decent breath is very scary. If it continues I hope you'll go to the ER tonight...you don't want it to get any worse. Take care and please let us know how you're doing.

Big Hugs,
Pat

[redtail]

Hi Shar,
so sorry you are in a bad place at the moment. It seems like every one above me has given good advice. Don't ever be afraid of phoning your neuro to tell them you are bad, its their job to look after you and help you!!!!!
take care of yourself,
kate

[erinhermes]

Hi honey! I'd definitely go in for more IV IG - sounds like you NEED a boost!

If you EVER have breathing problems, please do not hesitate to go to the ER and let your Dr. know immediately! There is nothing scarier than not being able to breathe - I know whereof I speak - unfortunately.

If the mestinon works, then by all means take it every 3 hours. I sometimes take mine every 2 hours or so - your body will let you know when you need to.

I think the first year is always the hardest. I know it was for me. I was scared
all of the time, that is until I spoke with Dr. I an made him PROMISE that he would NEVER allow me to get that sick again - ever. I then made him look me in the eyes and promise again - he did.

Since then there have been many "bumps" in the road, but I truly believe in remission. People all over the world go into it daily - they are just not on this site b/c they are out enjoying being well again!

Do you have a back up system in play? One where you can call a friend or family member if you experience shortness of breath? I did and it really helped me feel safer! I also made sure I was NEVER alone the first yr. - to the point where would have someone standing outside of my bathroom when I took a shower. It may sound over the top, but after 3 crisis situations and 8 days in the ER made me a bit leery.....

There is NOTHING wrong with being worried. MG is scary - plain and simple. I was afraid of everything, but when I started on Paxil, my anxiety went away. Don't get me wrong, when I feel really, really weak I do become frightened, but it is nothing compared to before.

Just let your Dr. know that you NEED a boost and get some of that "liquid gold" or "go-go juice" and you will feel better really soon!

Hugs and prayers your way!
Love,
Erin

Originally Posted by SharS

I just wanted to check in and let you all know I haven't disappeared again - just feeling really weak and not able to type much. I'm still reading the posts each day to keep up.

I don't know what's going on with me. My chest feels like an elephant is sitting on it and I can't breathe at all if I get up and hardly breathe even sitting. I have to prop up in the bed. My neck is also extremely weak and I have some kind of weird eye pain going on. I did sit outside and sprayed myself with Off mosquito repellant yesterday but that wouldn't effect MG would it?

If I don't get better tonight, I'm going to have go in tomorrow morning and have my IVIG. I was trying to hold out and space them 2 weeks apart instead of once every week, but I don't know.

I get so confused and paranoid about taking too much Mestinon. I think, ok, maybe I'm taking too much (60mg every 3 hours). It's been 4 hours since my last one - thought I would see if it helps to not take it, but I feel even worse now. The whole breathing thing is so scary.

Sorry for the long post - guess I'm a little worried.

[SharS]

Just want to let you know I'm leaving for the hospital. I was able to breathe a tiny bit better being in bed all night but still was having very heavy breathing. The minute I tried to get up to get dressed, it started getting worse. My neuro said come on right now. He's going to do an IVIG and see what's going on. I'll keep you posted.

Thank you, Annie, for the info about pesticides. I should know better and probably do, but just don't stop and think!

[mrsD]

I use a natural repellent, made by OFF... It is a Lemon/Eucalyptus oil spray. Works pretty good, but not 100%.

It might be an alternative for those who attract mosquitoes!

I think DEET is pretty awful, and potentially dangerous for most people in fact.

[suev]

And - believe it or not - - Bounce (the laundry towels)!

You can rub it on your clothes and then hang the sheet on the back of the chair you're sitting in and it works pretty good too.

I attach a bounce sheet to my belt loop whenever I pull weeds in the garden - and have very little skeeter trouble.

Sue

[AnnieB3]

Shar, I hope you are getting really good care. Let us know how you are doing when you're better.

I remember rolling around in vermiculite (the carcinogenic stuff put in attics a long time ago) when I was a kid. It was so "pretty and shiny." If you don't know what you're doing or don't know it's bad, it's sort of hard to stop doing what you've always done!!! So don't beat yourself up about it. I'm just really cautious about any toxins since I did a neon installation by a hill next to main river in our state in 1981 (art project) and realized I was surrounded by toxic dump material!

Take it easy!!!

Annie