Jen,

I don't have an official dx of MG or MS, but they are both on the table right now, and it is looking like i may have both. (brain lesion and oligoclonal bands point to MS. ACHR antibodies and striational muscle antibodies point to MG. Extreme paraparesis points to either one or both!) So I can relate, even though I'm just getting started with all of this.

I can sympathize with your fears about respiratory crisis. I had a respiratory crisis that sent me to the ICU about two months ago. Afterwards I was really worried when my breath felt short and I talked to my pulmonologist about it. He had the same advice as Annie just gave; and it really helped me. Have your incentive spirometer close by and know what range is normal for you. An inspirometer measures your lung capacity. That way if your lung volume severely decreases from your normal range, you will be the first to know about it. You can buy one really cheaply on amazon, or your pulmonologist can probably give you one. (search "incentive spirometer" on amazon or google to see several options. Some as cheap as $7)

Using the spirometer regularly also exercises your lungs and makes them stonger to reduce your risk of respiratory crisis. If you have decreased activity levels, this is actually a really important thing to do.

Another thing, as Annie mentioned, is to have a pulse oximeter. I got one for $35 and it's great. You can even find them for $20 (search "pulse oximeter" on amazon or google) Knowing your oxygen saturation levels will tell you how well your lungs are doing and how much oxygen your body is getting. This will be a way for you to feel reassured when things are fine and to be warned when they are not.

When I feel short of breath, or I am worrying about my lungs because they hurt, feel tight, etc, I pull out my spirometer to check my lung volume, and then pull out my oximeter to check my oxygenation. If both are fine, then I can genuinely because I am not just trying to "not stress" about it (which i was doing before). I actually know that I am fine. It really helps. You would obviously still want to make an appointment with your pulmonologist if something feels off, but you will know you are not in crisis if your volume is good and your oxygenation is good.

Best of luck to you, and hope to see you around on the forums (both MG and MS!)

Mandy