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A MGteam Member asked a question đź’­
Tucson, AZ

I've been struggling with SOB for a while now. Recent diagnosis and only on mestinon. Today I woke up achy and not sure if it's the beginning of a cold or allergies? I am feeling terrible though. I gaslight myself a lot and I'd like to know when I should go instead of waiting last minute? I don't want to go if it's still able to breathe, but I don't know when it would be considered "ventilator" late. Any advice would be appreciated 🙏🏻

October 3
 · 
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A MGteam Member

Sending prayers your way Ariana.

October 4
MGteam

First — please don't gaslight yourself. With MG, shortness of breath (SOB) is something to take seriously, especially with a new diagnosis and an illness coming on. Infections are a known trigger for myasthenic crisis, which is a life-threatening emergency where breathing muscles become too weak to function properly. Go to Show Full Answer

First — please don't gaslight yourself. With MG, shortness of breath (SOB) is something to take seriously, especially with a new diagnosis and an illness coming on. Infections are a known trigger for myasthenic crisis, which is a life-threatening emergency where breathing muscles become too weak to function properly. Go to the ER immediately if you notice any of these:

- SOB that is getting worse, not staying the same
- Difficulty swallowing
- Feeling like you can't take a deep breath or get enough air
- Talking becomes difficult or your voice changes
- Weakness spreading rapidly
- Feeling panicked about your breathing — trust that instinct

Don't wait until you feel like you *can't* breathe at all. By that point, more than 20% of people in myasthenic crisis need intubation right in the ER. Also, make sure first responders know you have MG. Carrying a medical alert card or wearing a medical alert bracelet can make a real difference in getting the right care quickly.

When in doubt — go. It is always better to be sent home than to wait too long. 💙

October 3
A MGteam Member

Muchas gracias!

October 19
A MGteam Member

Buenas tardes Ariana. Si tienes dificultad para respirar, tienes que ir al Médico, lo más rápido posible. No quiero preocuparte, pero dentro de toda esta enfermedad, lo más preocupante es la falta de respiración y dificultad para ingerir los alimentos. Nosotros tenemos que evitar que nos de gripe. Yo tengo 18 meses y estoy mucho mejor. Tomo.180 mg de Mestinon, 100 Azatioprina, 5 de Prenidsona. Y cada 6 meses 1000 mg inyectable de Rituxinab. Tengo un 95% de mejoría. Y los más importantes es pedile mucho a Nuestro Dios Todopoderoso. Orar mucho. Un fuerte abrazo y mil bendiciones. Cuidate mucho. Ve pronto al Médico.

October 4

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