Trust me - it was a crisis - I was unable to breathe on 3 dif occasions for about 1 min. each and started to black out - I don't know why or how, but after that I was able to breathe a little bit through my mouth. On the last one, Mike called my dr. who made me go to the ICU immediately! Fortunately I did not require intubation -that is the worst - actually, not being able to breathe is the worst.........
Do you also have perfectly well meaning family members/friends who tell you to "get out more", "exercise" or "go to the sauna"? That absolutely drives me crazy! I know they mean well, but they really haven't taken the time to try and understand what we with MG r going through.........It's so frustrating! I know they love me, but they just don't "get it" - I don't know if they ever will......
I also have family members who swore I was "faking" in order to get attention - my sisters-in-law - and thought I'd never hear about it. I did. They don't come to my home anymore, which is a GOOD thing! The funny thing is that we always hosted all the holiday/birthday parties and I thought that things were OK until this. I was sadly mistaken. I was so ticked to hear that they were STILL gossiping about me while heading up to see me @ the ICU that I told my hubby they were not allowed - with friends/family like that, who needs enemies........... OK, I've vented enough.........
Take care!
Erin
Quote:
Originally Posted by MissyGirl
I think almost ANYONE who gets MG will probably never see remission. I personally have met only one person in 10 years.
Your pred dose was decided by your doctor. There are different protocols as well as different competence levels of doctors, different patient reactions, etc. What your doctor did does not sound unusual.
MuSK is a specific type of MG: Muscle specific tyrosine kinase (MuSK) is a surface membrane enzyme that is essential in aggregating AChR during the development of the neuromuscular junction. Its role in mature muscle is not yet clear. Recent studies have shown that antibodies to MuSK are present in 40% to 50% of patients with generalized seronegative MG.
"Crisis," btw, doesn't mean a "bad day" or a "flare up." Crisis is an emergency or near emergency situation when the following are present: Profound weakness of oral motor or respiratory musculature making swallowing foods impossible and handling of saliva difficult or difficulty breathing. When there are profound swallow issues, it takes very little for respiratory failure to occur. Hospitalization is recommended, and intubation is often needed for respiratory support. Simply feeling very weak and having difficulty is not a crisis, but an exacerbation. Only about 7-10% of people with MG ever have a crisis requiring intubation (thank goodness!)
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