Can someone please explain the test you can do yourself to see if your breathing is in distress? I read about it here, but I'm still not sure I understand. Do you breathe in, then count when you are exhaling?

I missed my night time Mestinon dose, so I've gone ten hours without any. I felt like I had a reaction to my afternoon dose (so I was reluctant to take my night dose). After talking with a fellow board member (and friend), we realized that it was probably because I hadn't ate or drank much with the dose. I was feeling so anxious. Of course, that could have been a coincidence too as I've been under a lot of stress these past few days. Anyway, I'm having a little bit of trouble breathing. I did just take a Mestinon along with some food. So, hopefully that will help.

Thanks for any help.

I have a document that talks about it but here it is:

You take in a normal breath and then as you normally breath out you count as far as you can. A mistake I made at first was being in distress from the breathing so I would rush the counting. Do it in a normal way. I was 16 will I was waiting to get to hospital area. A student did this test to me. Strangely no other doc there has done it with me.

My understanding is that 10 is a point at which you should be in ER/ICU. I believe it was a respiratory tech with MG that told me this.

http://www.ncbi.nlm.nih.gov/pubmed/20825771

http://www.google.com/#hl=en&sugexp=...f657eb4d8c6f0d

Here is a paper and search of other ones. I didnt find the one written by the neuro I have.

Annie59 take care

Thanks so much for this Annie. You explained it very well. I hope you are doing well!

I had no idea. Thank you! Just found out that I won't be receiving IVIG infusion tomorrow. Due to ice and snow, UPS did not deliver to our little town. It might be a long weekend!

I would like to add that counting can be deceptive. I realize that an "objective" measure would be nice so that you can be reassured - or not - but MG is not so easily calculated.

A sudden change in how you're doing or a significant increase in weakness in breathing or overall or in swallowing should prompt a trip to the ER.

That first article, Annie59, is as it relates to pediatric patients. It's best to speak to a pulmonologist about guidelines for breathing.

Shalynn, What kind of reaction did you have when you took that afternoon dose? How much was the dose? It may not have been the fact that you didn't take it with food. I hope you will discuss this with your doctor.

Annie

Thanks for the reminder Annie. I do know that this self-test isn't 100% accurate. I'll be sure to get help if things get real bad.

I guess the reaction I had was more of an anxiety attack. I only took 60 mg. I've been taking 45 mg three times a day and I was finally going to up my dose. I had taken the 60 mg the day before and I did fine. I had also taken the 60 mg that morning and did fine too. I may be wrong, but I think it was more of a coincidence than a side effect from the med. I have had a few very emotional days and I haven't been eating right. I'll be sure to call the doctor if it happens again.

Thanks for your help.

Shalynn, My body is sensitive to things at this point more than ever. I learned the hard way that stimulants some in so so many things and forms we dont know and it is not the same for everyone. I am sure that many of you drink coffee. For me one cup of coffee and even 45mg of mestinon would have me hanging from the ceiling singing Dixie!! Shorlty after I was put on mestinon and was very green at all this I had a very very bad morning with my breathing. I called my neuro and he said come to ER. I got ready, was out of my usual soda as I had been in the hospital so I grabbed an organic soda in the back of my pantry. By the time I got into the ER I could tell I was doing better. Surprisingly better. There was something in the soda that had inceased the affect of the mesitnon. That was the first time that had happened for me but it has not happened from time to time. I am sure many people dont have this but I do. Given the farm chemicals in the local water here in Iowa it wouldnt be surprising if I glowed at nite.

My thought is that you may be having something like this going on.

Annie59

Caffeine has a similar effect as Mestinon, although it is not as effective in controlling MG.

I have found that drinking a cup of coffee when I feel my worst, especially in the afternoon helps a lot. It boosts the effect of Mestinon or helps me through time between Mestinon doses on those bad days.

And if I drink coffee when I take my Mestinon when I am feeling pretty good, makes me get too much Mestinon and I feel nervous and jittery.

One related thing I discovered is that if I drink coffee every day, its positive effects become less, so I am not drinking it every day but only when I need it, the help it gives me is very reliable if I skip days between cups.

I am now drinking green tea in the mornings and sometimes in the afternoon, this seems to help keep my MG stable. I can't really explain how it helps very well and I'm not completely sure if it is. Green tea doesn't give the Mestinon effect a boost but rather seems to make my MG symptoms a little less severe and also seems to keep the Mestinon from making me nervous, as if the green tea is helping to spread the Mestinon dosage out rather than it kicking in so quicklly...but only a little, so I am not sure of the effects...it is as if it keeps me more in the middle where I'd like to be, not nervous and not weak which are the two situations I keep ending up in with MG and want to avoid. I am wondering if it is something else in the green tea besides caffeine that is slightly helpful. This green tea drinking is a new experiment of mine, I am always looking for things that help my MG, even a little.


Annie59, about the farm chemicals...they are really really really bad for MG.

I drove by a cotton field that had an airplane spraying nearby and didn't think I was going to make it home, and when I did I went straight to bed after taking additional mestinon and slept all afternoon and into the next day, waking a few times for a snack and more Mestinon, I think I slept about 16 hours. I felt awful for at least a month. I will avoid driving near those fields in the spring from now on.

Do you live near farms? If so, you should consider moving...I know that seems extreme, but it is something to consider.

Another thought...some people are extremely sensitive to the pesticides in our foods, those organic foods are a good idea for those of us with MG but maybe more so for you. From what I've read I think you are already eating many organic foods, maybe you should eat more organics.

I am wishing you guys the best, I hope you feel better.

Thanks for the post about green tea. I will try it sooner now. I had heard there was something in it that counters the caffiene. Dont know what. I dont know what substance was in that organic soda. I cant remember if it was decaf. I think I assume it was.

About the farm chemicals. When I was young my bedroom window faced the field where the chemicals where laid down by the plain. Atrazine was probably was being used then. Not good. I dont live near a field now but when I started bottled water use back around 2007 I checked into the local water supply report on chemicals. I was suprised by what was making it into my water. Sure it tasted fine but at what cost. Now when I get contact with local water I can feel it. I dont drink tap water on a day to day basis and feel I am better for it. I do eat organic for the most part.

One of the obvious signs to me when I dont so organic is hyper, stimulation and sleep disturbance all signs of the nervous system part of some of those chemicals.

Annie59