I had an EMG and it was "highly suggestive" of MG - and other motor neuron things as well now that I read up (two members of my family have or had ALS so not so happy about this).

Had some bloodwork but not much. Going for a chest MRI on July 9th. I had an xray recently before some surgery and it was clear so he wanted something more detailed. Neuro only ordered seds and acetlcholine blocking antibodies. I don't know if that is enough and I think my sed is normal.

I seem to have very weak arms (both shoulders are frozen which really makes things hard) and legs. Eyes.. well, I have had eye issues with seeing double when I am tired for over 20 years so I am not sure if it is related or my Cushing's gave me a pass for a long time. I am an endocrine nightmare so having another thing -and another autoimmune thing... I am bummed out. Hard to say as this seems to present differently with everyone but... I had to guess what I had and ask for the EMG!

Hi Rumpled

Gosh with all you have to cope with at the moment I hope you dont have mg.

Ive been diagnosed with mg for almost 5 years, and it still manages to surprise me sometimes.
Hope you find out soon you dont have it.
Take care

Rumpled, it's very common to have more than one autoimmune thing going on at the same time. Like redtail, I hope you don't have MG, but it's better to get a definite diagnosis and treatment, than to be in diagnostic limbo. I've coped with the MG since the mid-70's. It's no picnic, but there are worse things out there.
Hugs,

Thank you.
I just had a hysterectomy a few months ago. Before that I had my adrenals removed to cure my Cushing's disease. I have been unable to work since that surgery as I never recovered any stamina. I have also had pituitary surgery, thyroid removed (in two surgeries, as different nodules on the right and left) and various other surgeries. My neuro says that I am not an appointment but a fellowship.
Does everyone have a thymectomy? How do you know if you have MG as opposed to another motor neuron something?
Is everyone so tired? Nap all the time? In pain?

Well, my blood tests all came back in normal ranges but I don't have exactly what they are. My MRI showed that I have thymus tissue but did not seem to have a thymoma but it was done without contrast. I am also skeptical of imaging as well, it has always been wrong for me since it has missed stuff before like a pituitary tumor for 12 years as well as telling my my adreneals were a-ok both before and after they were removed when pathology said they were twice the size as normal... not to mention my thyroid...
But despite the normal tests, the doc wants to say I have MG. Do I need to go for another opinion?

Aww Rumpled,
sorry I havnt got back to this site sooner, I forget where Ive posted messages!! Sounds like you are going through a fair bit at the moment, I whish I had some answers for you. If you dont feel comfortable with what the doctor has told you, (I now trust my instincts alot) I would go for a second opoion, after all whats the worst that could happen, you could find out what you may not want to hear, but will be able to start treatment. Is this doctor saying that he wants to start you on meds?
I didnt have a thymoma, and have had a thymectomy, it seems that mg is so very different for each person.
Yes I get very tired, but my neuro says thats not the mg!! I also have alot of arm and leg pain again, not apparently related to mg, so I just put up with it and go and rest when its bad.
If I havnt answered some questions you want answered feel free to ask, Im a bit brain foggy today.

Hope this helps a little
take care
redtail

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