Hi, everyone. Whenever something new happens, I don't know if it's just some passing thing, or the start of something scary.

I have had a few episodes lately where I'm sort of light-headed or short of breath. I remember this feeling from being in labor (I have seven kids), and eventually learned that it's a short-of-oxygen feeling. You feel like everything around you isn't real.

Anyway, while this is happening, I have no sense of struggling to breathe. I'm not panting, or having trouble drawing a breath. There's no tightness in my chest, etc. I'm not gasping for breath.

I'm just on the look-out for new symptoms. If my breathing muscles are being affected, could it feel like this?

AnnieB, just so you know, I have learned (from you and from my neuro) that this is one thing you don't fool around with. Any real trouble breathing, and I'll go right to the ER. I know that with MG, symptoms can become life-threatening very abruptly.

Abby

Abby, How about an update of what drugs you are on. It could be MG but it could be one of your drugs. Are you still taking Mestinon? Does taking it help?

This is a silly question . . . are you drinking enough water? Changes in fluids affects changes in electrolytes affects MG.

When I had the sudden shortness of breath episodes, it was like how you describe. Sort of like I was in a "dream" state, feeling like I could stop breathing, dizzy and suddenly overall weak too. It was almost like I skipped a breath or two, which doesn't happen since it's all involuntary.

So, what doctors have you told about it?

It's worth getting a once over by your primary doc, with a metabolic panel, etc. You know how other things affect MG. And what about the Graves? When was the last time you had an ECG? Not that you would have a heart problem but it's worth checking. And a complete blood count in case the immunosuppression is causing anemia, causing feelings of being faint.

I hope you can figure out what is going on. Take it easy until you do!


Annie

Abby, I want to be clear this is my experience only. I have had the light- headedness and shortness of breath under circumstances that arent to do with my MG per se. I acutally ended up in the ER with it in Nov 08. I thought then it was likely my MG altho I told ER staff in all honesty I had started a diet change tho I didnt see how that would be it. Also it was my first winter on mestinon and had the usual improvement in symptoms which accompanies me needing to reduce the amount I am on as my body DOES act like it is too much. I was down to 30mg from 60mg 3x a day. They called my neuro and she said go back up to 45mg. My family doc who has lost his way took the easy way out and said give me zanax. The doctor told me this and I said I dont need that that has nothing to do with this.

Now what I know about this is that in the diet change I had reduced my dietary sodium. Now that is a big deal for me as I dont eat hardly any processed or fast food which is one of the biggest sources of sodium. Now that I have inceased my salt into my diet per doctors orders I have none of this anymore. My internist told me I have POTS which if salt and water is out of balance, low I get the lightheaded and even breathing and weaker to alot weaker. I am so glad I know what this is now.

Annie59

Abby, Do you have any problems with your sinuses? I'm just wondering because I do and I sometimes get that same feeling.

I know anything that has to do with breathing can be very scary. It's good that you realize that. Don't wait too long to get to the ER if it gets worse.

Shalynn

Thanks, everyone. I'm taking nothing right now except my usual HCTZ, for migraine prevention. I haven't started the Imuran yet, and I stopped taking the Mestinon--it wasn't helping, and it was bothering my eyes a lot. I have been thinking about starting it again at a lower dose, but haven't.

Annie, I am going to see my endocrinologist soon for a complete thyroid check-up. I am going to call my PCP for a lab slip--I should have my potassium checked. I think my fluid intake is fine. I had an echocardiogram years ago because I have a benign arhythmia.

What doctors have I told about it? You're cute. It was just so mild, that I don't think I would have thought anything of it, except I'm on constant yellow alert. But I need to talk to my neuro anyway (he does this "I'll call you, but if you don't hear from me in two weeks, call me" thing...) to start the Imuran (my genetic screen should be back by now). So I will mention it.

Thanks, all of you.

Abby

Oh Abby did you just stop the mestinon before this came on? I dont think I was clear that moving my mestinon dosage around was part of the problem that November. For me the mestinon can mess with my heart/circulation/bp if I mess with dosage. I have a history of very low bp if that is relevant. I think the mestinon actually helps this. Mestinon in tiny doses is used for POTS. I cant excplain it but I worked it out for me. I could take some mestinon, a small extra dose or the like and the liteheadedness and such would stop.
Annie59

Thanks, Annie. No, I've been off the Mestinon for over a month. I originally quit for the SFEMG and was surprised not to feel worse, so I stayed off (and my eyes are so much better without it). But my neuro suggested I try again, and I have been intending to...somehow it takes a lot of mental energy to change routines. I'm sure you know what I mean.

Brr, it's cold this morning! Friday's the day I teach at my co-op. It's just one class. I love teaching--means the world to me--but it does me in.

Abby

I stopped Mestinon as well because of adverse reactions (blurry vision; heavy eye lids), but then I couldn't breathe at night. So, something had to give. My doctor told me to get back on Mestinon. Eventually, I did but at a lower dose, his suggestion (the lower dose), and I eventually worked my way up to the original recommended dosage.

Occasionally, I might get a bit of blurry vision in one eye, but that is usually because I am having a low stress/low impact day and did not require the usual dosage of Mestinon.

It makes perfect sense to evaluate minor symptoms before they develop into a more significant problem.

If you hear an unusual noise when driving your car, would you take it to the mechanic ASAP or wait until one of the wheels falls or the engine breaks, before you do something? so why treat your own body differently?

I personally think it would be wise to have a full respiratory eval. at this point. either it will show some minor problem or it will serve as a good baseline if something does happen (which hopefully will not).