In process of getting diagnosed..
 

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 :hug:

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

Actually I like the doc... only I have never been diagnosed with anything so easily so maybe that is it! I don't think he has treated many with MG as I had to tell him the extra tests... so that tells me unsure. I just don't like the family history of ALS and me not fitting in with MG so well as my eyes are fine. I just have a lot of questions. If I had had one blood test that showed it, well... but nothing.
I see him the end of the month to discuss meds and the thymectomy which I don't think he wants to do.

The doc says he thinks I have MG despite the bloodwork. He is giving me a trial of mestinon. In addition, he wants me to see other doctors in NYC that are specialists that are a motor neuron group at Columbia as well as a rheumatologist at Mt Sinai. He says I am a bit complex since my eyes seem to be ok but my arms and legs are weak. I am not keen on the steroids and he knows it and so did not push it despite my husband pushing for me to take more. I lived with Cushing's for at least 12 years and it destroyed my muscles and I blame it for being in the sorry shape I am in now. So at least he wants to send me off to better docs. I am seeing another local doc today to see what he thinks.

Hey Rumpled
Good to hear you are getting somewhere. Have you started the mestinon, are they working? How much and how often are you taking them(hope you dont mind me asking) Hope all these visits to doctors helps,
take care
redtail

I was given 60mg of mestinon. I can take them every 4 hours but I only have 30 pills to try. It did not really do much. I took it for the first time yesterday. It knocked me out. The other doc basically took 15 minutes to tell me he could not help me at all - something about being too complex. LOL. I guess I have to find some center that will take me on but I am afraid that it will be another 12 year battle like it was for my Cushing's. I don't know if I have that energy in me. I barely had it last time. Why can't I have something easy like a cold? Sorry for whining...
I will try more mestinon today. See what happens.