Wow. I have tongue weakness and I feel too tired to hold my throat open to breathe sometimes. I use the breathe right strips at night to help. Talking is hard too. Slurred speach comes and goes. It seems to hit me every 2 weeks!
I am seeing Nuero number 3 today. I am undiagnosed and they keep passing me around! My family sometimes gets frustrated with my weak days like I am making this up!
My MRI and vision evoked tests for MS are all normal. I have upper leg and arm weakness but the tongue involvement is the worst!
I also have muscle jerks and I'm scared of having ALS.
I wonder if people with MG get any annoying muscle twitches in large muscles like legs, back, upper arms? It's common in ALS so it really scares me. The good news is I get weaker after using muscles but in the morning I am almost normal untill I roll out of bed for about 15 minutes. I THINK in ALS you are weak all the time.
Maybe this third nuero will have a clue. Just wondered if anyone twitches? I have heard that the mess can cause this but I'm not on any.

Hey Jellyfish,

I often have a lot of weakness even in the morning...I wake up, and am barely able to move my tongue...This is atypical of MG since MG involves fatigueable weakness, so one should be strongest in the morning...But I figure that whatever illness a person is subject to interacts with their own uniqueness...I have other conditions that might be mixing with the MG...It's the same for you...Even though the info. out there re. MG will say that twitching isn't part of the MG picture, it doesn't mean that you can't be subject to other conditions that might cause twitching, most of which are benign...I actually have had twitching in my feet for ages (I think I mentioned this in another post...lol...sorry to be redundant)...I have chronically low levels of calcium, so that's prolly the culprit...The twitching's so bad that my feet go stiff in a really odd position...Like they're seizing...

I hope that the neuro. will be able to figure things out for you...None of the other neuros. have suspected that this could be MG?

Ttys!
Nicky

Neuro number two also mentioned MG. This new neuro saw muscle atrophy but since 6 months ago I was active and for 6 months I have barely moved, I thought that might happen. She mentioned Polymyt???sis (I don't remember how to spell it). She is doing a musk test? And a lot of other blood work. Then scheduled an EMG which I am scared to do. I don't DO pain! But I am always hurting so that's why she suspects Polymysitosis???

Here's Companionship and Empathy
 

Nicky, on this forum, your never alone. And your symptoms are not wierd, just individual. We all care about you. Try hard to take it one day at a time - one moment at a time if necessary, and don't worry about what tomorrow may bring. Your meds should level out, possibly with some minor tweaking. billie

Response to Jellyfish
 

In Texas, if you have slurred speech, you get a trip to the jail, until everything is sorted out. Better write out your dx and carry it with your driver's license. billie

At least a won't slur with a Texas accent. I'm from Indiana! LOL

Hi there
 

Jellyfish,

My dad has Dermatomyositis...It's basically the exact same thing as Polymyositis but with a rash...He has a purplish/maroon rash on his face, knuckles and eyelids...He has a lot of pain in his muscles and difficulty with swallowing....He has difficulty getting up from a seated position and extending his arms out and his wrists are affected too...He's also had interstitial lung problems from the disease....Have you ever had any unexplained lung trouble?

Where is the atrophy? MuSK MG can cause facial atrophy...AChR MG usually doesn't result in any atrophy, but could if there's denervation....Polymyositis can cause atrophy too due to destruction of the actual muscle...

You mentioned that you had a droopy eyelid in another post...This isn't a typical feature of ALS or polymyositis, but is often one of the earliest/first symptoms of MG...

Nicky

I haven't had any lung problems, no rash. Muscle atrophy she noticed was arms, hands, legs.
I did have the weirdest droopy eye. Not really bad, although in some pics I took with my daughter, the affected eye was only a slit in one pic and droopy in other pics. I could notice it in the mirror and my husband noticed it after I made him look at my eyes, but it wasn't really noticable, except to me! LOL
My whole face seems droopy lately, but I just turned 49 so its about time for it to droop maybe! LOL