I have a question for yall (some of you may have seen me on here before - diagnosed with CIDP, though none of the tests overwhelmingly confirm that, so I always wander about other diagnostic possibilities- espeically since I have so many MG symptoms).
I have been doing really well since my second IVIG dose back in january.. however, I came down with a cold this past couple of weeks, and I"m now realizing just how much better I had been feeling... suddenly I can't pick up my kids anymore (i couldn't for months before the IVIG).. my fingers are feeling "floppy" again.. My shoulders and hips are just like jello, as is my trunk muscles.. It amazes me that literally 4 days ago I could swing my kids, and now it's like they weigh hundreds of pounds, my shoulders just can''t do it... My legs feel like I have concrete blocks on them and my face will barely smile (though shockingly my swallowing is better since my last IVIG- getting it every 2 weeks)

Anyhow, my question is this - almost a year ago when i was really sick, i remember my muscles being almost uncomfortable with weakness- like a vibrating weak feeling.. even my tongue..especially my shoulders when I walk,... when I should be swinging my arms when I walk my muscles won't do it.. I tried lifting my arms to do something today and they were SOOOO shakey.. I feel like I'm sliding back to where I was a year ago.. Anyone else have this symptom??

YES! I had exactly that….really shakey jello muscles you describe to the point where I wondered if it was noticeable to others!

Another person with similar:

http://www.mga-charity.org/forum/mg-...eeling-in-body

About the ´lack´of movement:
I saw it as my body saving energy on´luxury´ movements like with the arm swinging you mention; a small spring in your walk; bouncy feeling in your heels when you go from seated to standing position when you´re healthy and energetic (which is easy to take for granted until you are not)

Sounds like it came on so fast, hope it´s not going to stick around long
Good luck to you -

Anacrusis

thanks so much!!! I appreciate your reply and the link - I don't feel so alone in that now!
Another wierd question - do you ever feel like your lips are puffed out?? I noticed after each of my kids were born, for a few months my lips seemed bigger (I know totally strange sounding)!!! I thought huh, maybe it's the hormones, but hey, i'm not complaining - people pay money for this haha.. now that I think back my face was a bit weak each of those times.. now everytime my symptoms flare my lips seem bigger.. I think I don't have the muscle strength in my face to hold my lips in??!?! Ever heard of this??
Have you been diagnosed with MG officially?
THanks again, and best to you too!

I think my facial muscles are very weak to the extent that it has changed my appearance. My right eye looks sort of like i have a black eye (not necessarily so much that it is black but that is just how it looks now for over a year that I am certain of). My lips don't look bigger but perhaps it is just generalized weakness overall.

Weird I know.

Thanks Steph C- My appearance has defintely changed.. my change in eyelid creases was the first thing I noticed when I got out of the shower one day to put on my eye makeup.. I thought huh, strange.. guess I"m just tired, guess I just feel horrible and weak due to being a Mom of a newborn and two kids under 16 months!!.. ha.. i wish that was all it was!! I feel like I look frowny.. yes I have bigger lips, which is great haha, but I look tired with my droopy eyelids and mad or something in my eyes.. not very attractive, but hey thats the least of my worries right now!! :0!

Are you still able to whistle? I´ve heard that some have problems with that. I have to admit weakness in my facial area was limited to masseters and suprahyoid muscles under the chin. Tongue felt WAY too big for my mouth and when I would read bedtime stories to my child I was fine at the beginning of the book but sounded like a drunk by the end of it. At my worst I was falling over into my dinner plate in front of guests as my trunk muscles could no longer hold me up towards the end of a meal. So there you are bny806…. plenty of us with strange symptoms - you are not alone!!

I have 2 suspected seronegative MG diagnoses from 12 months ago. And due to a ´comedy ´of errors, with one unfolding after another, I ended up having to wait a whole year to get my upcoming SFEMG. In the meanwhile Mestinon, ice, rest of specific muscles all help. Whereas antibiotics, heat, repetitive use of specific muscles, provoke myasthenic weakness during a flare up.

Wishing you renewed strength asap

Anacrusis

Thanks Anacrusis!
I can still whistle now.. however before my first IVIG i couldn't puff out my cheeks anymore.. I came home from a long day at work and couldn't hardly seal my mouth - drool out the corner of it and everything- again attractive!
I also could barely read to my kids at night.. my speech was slurred (some words more than others).. and I would get so out of breath.. i would keep reading, but would be so out of breath I would almost faint.. I kept pushing it because I was 30 years old... and should be able to read a simple kids story to my kids!!! That was cured with my first round of IVIG! Sometimes, I forget how bad off I was..
I also melt i the heat!! I will go outside (I Live in texas-so it is HOT).. and next thing I know my eyelid is obstructing my vision, hips and shoulders weak.. I sure don't feel like I'm 32, but more like 92!

Have yall tried steroids??? I went to the dr today (just my PCP).. I have 1 week until my next IVIG.. and have a lot of work this weekend.. I have NO idea how I'm going to make it, but gotta keep my job for the insurance and everything else (and I want to keep working)!!
My PCP suggested we try a short burst of steroids (6 days only).. in the last 16 months through all of this, I have never tried any steroids.. my neuro mentioned it ages ago, but she didnt seem to have a lot of faith that it would "fix" me, she liked the IVIG idea more, but would have been up for steriods too - she kind of left it up to me,, Anyhow, I'm worried.. what if they make me weaker!?!?! But, what if thats our answer, it could get me through the inbetween times!
Thanks, hope yall are doing well!