I've never seen anything addressing this particular point. Answers may exist, but I haven't found them. Actually, the question has at least three parts. The first is asking about generalizations covering the entire spectrum of those with MG. The second asks the same question as it relates to those within each specific band of the spectrum: AChR+, Musk, Seronegative, ocular and gMG. The last relates to individuals: Is my next flare going to take as long to resolve as my last flare? I'm sitting… read more
That's what has worked for me.
Hi Robert, I haven’t found any hard duration timelines, but I have found some patterns - for me the summer heat and the winter freeze are my ‘kryptonite’ also sudden sharp sound cracks…I tried to describe some of my own patterns in a recent Substack article, sharing them here in hopes they may be a help…
*I tried to share the text, but MGTeam said it was too long…
https://open.substack.com/pub/bobriain/p/krypto...
Thanks, Heidi, for such a relevant and detailed reply. If I understand you correctly, you're saying that early recognition and early treatment will shorten and minimize a flare. Did I get that right?
Hi, I've had 3 crises and was hospitalized for one bad flare as well. Here's what my experience has taught me:
1. Track your symptoms. Through this, I've learned that falls, increased fatigue, neck pain/weakness, and bad choking episodes always occur as an early flare sign. They're such consistent signs that my husband knew I was having a flare before I did.
2. Seek additional care early. Of my early flare signs, I now know that bad choking and falls are a "sign of no return." Those symptoms will always lead to severe food and breathing problems. I've learned that seeking care at the choking/falls level makes it so my flare isn't as severe, long-lasting, or deconditioning.
3. Know your effective rescue treatments. For me, I can do a 10-day burst of Prednisone to pull me out of a small flare, sparing a hospital visit. IVIG is a wonderful pre-surgery treatment for me. If I do end up hospitalized for MG, PLEX is my must-do.
4. Keep an MG go-to book. Mine has a brief medical history, medication list, doctors names, recommended treatments (like those I listed in #3), the Cautionary Drugs list (from MGFA), and the Emergency Guide for MG. My work knows about my yellow book, as do my friends and family. It travels with me.
All this takes time to learn. Be patient and forgiving with yourself.
First, so sorry to hear about your fall and the flare it triggered — that's a really rough combination to deal with. Hopefully some of this helps while you're waiting it out.
General flare duration across the MG spectrum
Honestly, this is one of those frustrating areas where hard data is thin. MG is famously Show Full Answer