I see the specialist at the end of this month. He will run another EMG and we will see how it goes. In the meantime, I have lost much of the use of my left arm too so it makes it so hard to do a lot...

Well, Mestinon causes me terrible diarrhea, and makes me nauseated. but I continue to take it. I was told that if you are lactose intolerant,you'll have these kinds of problems with it. ( It has Lactose in each pill) I take special meds to help control it. But not the script I was given to help with the diarrhea is causing me stomach problems. Just a vicious circle I guess.
What's Cyclic Cushings? I'm curious, as I have Cyclic vomiting. It's horrible. I just got over a bought last week, thankfully I didn't have to go to the hospital or anything. When I was first going to the doctor, they thought Cushings cause my cortisol was so high, but now it's all over the place.
Love Lizzie

Cyclical Cushing's is where you have high cortisol readings sometimes, but normal at others. So the tumor cycles in hours or days or weeks. It is extremely hard to diagnose as you will have all the symptoms of Cushing's but endiots will look at the abnormal test and say oooh and then look at the normal test and say oh! the abnormal test must have been lab error as they are blind to your symptoms that are freaking flashing in front of their eyes. So as your life is crumbling away for a decade or more, you cannot get any help as some of your tests are normal. Do I sound bitter? Cortisol should never be high and a normal test should not "wipe" out an abnormal test if you have symptoms or even if you do not as I was thin for many years. Eventually I came within 6lbs of doubling my body weight ("well, you must be a overeater in denial then, let's put you on anti-depressants") and now I am pretty much permanently disabled from the effects of the cortisol and being panhypopituitary as the stupid docs ignored all the signs as my testing was inconsistent. So I was not perfect testing, they just wanted me to go away and get sicker and I sure did almost to the point of dying yet my tests still were only mild at best. Do they ever think that it is the tests that are a bit off? No. I suppressed on the dexamethosone test ergo I must not have Cushing's. That pathology cannot be right.

Cyclical vomiting... cortisol all over the place? I have friends that vary from cortisol too high to too low and go from Cushing's to Addison's so that may account for the vomiting. It has happened. You need a good doc and a lot of testing to catch it. 24 hour urine tests, 8am and midnight serums, saliva tests, 10 hour urines (that is how they figured I cycled at night, never slept and that concurred with my sleep study).

I am not lactose intolerant that I know... I have to drink tons of milk now that I have a PTH problem (joy). If that happens... man... I am hoping they can treat this MG thing as I need my arms back. Now I am starting to fall. This is not fun.

Why can't things be easy??
My cortisol levels have been too high, too low, and non existant. But when I go and get retested it's fine. I've had the 24hr urine done, and all was fine. Except I was a bit dehydrated. At the moment, I've been nauseated, for well...forever. Seriously, it has been months that I've been battling nausea. But I've had other things going on. For example, Cellcept, caused my kidney's to start to shut down, so I had to go off of that. Kidney's were inflamed. I do have and endocrinologist, and she is very careful check everything, all the time. But the last couple of times, cortisol, has been perfect. The 24 hr urine was done in 2004, before the mg diagnosis.
Literally in two weeks, I have to have a colonoscopy, and (what is it called when they do it down the throat? can't thinkrolleyes Anyways, they're doing them both on the same day. Said it would be easier on my body..
I hope they're right. They want to know why I keep having these cyclic vomiting episodes. I guess they're worried about me having an auto immune intestinal disease, like microbiotic ulcerated colistic (sp?)
Thank you, I'll have to ask when I go back to my endo in november.
I already have 3 rare off the wall medical problems, what one more..:cool
I'm a narcoleptic, Myasthenic, and I've had Dysautonomia for years.
I hate my health
love Lizzie

Hi,
My names Adam and i was born with MG which kinda sucks. But still i have never met anyone else who has it no matter how hard i try. I am almost 20 now and am sufferening from depression also, and the 2 together are quite dominating in my life at the moment. Well i just wanted to say hello and perhaps i will be able to give and recieve information and adivce that could benefit us both.

Thanks for reading
Wallace x

Well Lizzie... have they checked your renin and aldosterone? And have they done an ACTH (or cortsyn) stimulation test? That may tell them a lot if you are vomiting... Wretched endos... I had to be sick so long that now I am perma-sick.
That dysautonia... that could be related... I take a lot of salt and florinef. (even though I can't spell!)

Adam!
I cannot imagine being born with this (yes, it does suck) but it seems like there are a lot of groups out there and you should be able to find someone near you...
I suffer from a lot of crap... somehow you need to get the depression under control whether it be from meds or meeting people... I know meeting other people with my diseases on boards and getting things under control did a world of good for me.
Hang in there and glad you came aboard! Why not post something in the intro so everyone will say hello?

Hi, I have no idea if they have check the alder?? can't remember now how you spelled it.
Next month they're checking for Lupus. I have no idea what's going on, I just know, I'm nauseated all the time. It's very wearing.
Adam,
Hi, welcome, jump in as much as you like. I have met one person, in person with MG. It's an unusual feeling. I have spoken with another on the phone, again, a weird feeling.
Love Lizzie

Keep us posted on results, Lizzie!
And welcome, Adam! Very nice to meet you, and I look forward to reading your posts.

So I went to the expert... my EMG there was largely normal (LOL)... but he still found me strange. My eyes are ok so that threw him off but I cross too easily but can hold them up. He is running a bunch of bloodwork and I go back for a SFEMG in late October. He is thinking it cannot be one thing but may be MG with fibromyalgia, polymyetis (sp), or something more muscle related. My Cushing's probably "treated" it and when that was resolved with my adrenals being removed, that is why I lost all my strength all at once. It could be that my endocrine issues wasted my muscles really badly... but he is doing tests and no diagnosis was made as yet. At least he said that whatever it is, he would not give me steroids. Thank you! I liked him.

I wanted to give an update. I just had an SFEMG of the arm (my eyes are normal) and it was abnormal showing mild to moderate MG. He did run another set of tests including the MUSK tests, however, I do not have the results. He is sending me for a muscle biopsy next. He is waiting for all results to be in before a diagnosis is final but it may be mild to moderate MG or a primary muscle disease.