Myasthenia Gravis Support Group

Hello I am newly diagnosed with MG and set to go into the hospital tomorrow morning for 10 days for some plasma exchange and treatment. So, I'm kinda creeped out by this whole thing and not really sure what I am supposed to do. Can anyone here tell me how you prepared for this treatment? Can I eat before? Take my meds before? My nuero didn't really say, just kinda scheduled me to go in and told me to show up....

Does it hurt... make me sick? make me better? Seriously? I need some info here folks please please please someone reply back on here I'm begging you I wanna talk to someone who has been through it! I can AIM or Facebook chat or just go back and forth on here but I need to hear from people who have had REAL experiences please...

much love,

Angel

Hello Angel, It's possible you are at the hospital already, but please know that at the very least, you are going to feel a great deal better when you're done. You'll be a bit tired, though. The central line might be a little scary, but no worries. I just finished a course of treatment.

-It doesn't hurt

-It makes you feel better

-Have a good breakfast before you head out

-Take some reading material

Feel free to ask more questions--anything you're curious about, or don't understand.

Best of Luck!

omg~ I am here at the hospital they are telling me they HAVE to put that damn thing in my neck they can't put it anywhere else and i know damn well they could do it in my chest it does not have to be in my neck!! That is not going to work for me in the nek!! I move around too much, my neck is overly sensitive as it is and I have a bad habit of grabbing and rubbing my neck anytime I am nervous!!! WTF!!

So so far this morning they have tortured me with the repeated stimulation on the muscles you know the electricity... medieval torture if you ask me... and then the EMG with the fraking needles!!! I want to slap them all upside the backs of their bald heads!it was a most unpleasant experience!! for real! I'm hurting and now they are arguing with me over this thingy for the plasma exchange... GAH! Am I being stubborn here or is it within my rights to say no the neck does not work for me and I know there are other alternatives!

Angel, Believe me when I say I get what you are saying, and feeling. I've had 12 central lines, 10 in the neck. Having a line inserted, generally, isn't a problem. Having it "taped to your neck" isn't the most pleasant experience. Fortunately, they'll take it out when you're done, and removing it takes only seconds.

Do you have a right to say where they can put it?--perhaps, but I would think it a good idea to ask them, because with their experience, they'll have a good idea about what area will be most receptive.

This is a very trying time, I know. I think you are a strong woman, so practice some deep breathing, calm your mind, and pretend that your children are sitting, watching you.

Keep us posted...

I've never done the plasma but the frustration is very familiar. I couldn't communicate other than with a pen & paper this last visit so there were some crazy moments when people were jumping to conclusions. If my wife hadn't shouted down a couple of neophyte doctors I'm not sure how it all would have turned out.. You might even ask for something to calm you and tell them how freaked out you are. I found that when they saw me as a vulnerable PERSON things went better.

well I stuck to my guns and they used the veins in my arms, I have good veins! THANK GOD! IT is my choice! They can not force me, I found this out for sure today. Man this really sucks though, I have to do that whole exchange process 5 more times over the next ten days... I do feel a little better though already, just a little not any big change in muscle movement or weakness yet but I am not feeling the all over malaise as much, the deep down bone ache that I have all the time has eased off a degree or two.

I have the MUSK version of Myasthenia and i'm not really sure how this differs from the other type.... an anyone explain?

'Morning, Angel, I'll post a ver-r-ry elementary explanation of the antibodies because unless we're all going to be scientists, we don't need the indepth explanation. There are deeper explanations on the Net.

With Myasthenia Gravis,our blood test results are either positive, negative, or MuSK. (It's actually anti-MuSK, etc.)

If a myasthenic has a positive AcHR antibody test, the result is a diagnosis of MG, often accompanied by other tests, as you are painfully aware, and clinical symptoms.

If a person is negative to this blood test, then the majority will not get a diagnosis of myasthenia.

If a doctor (and this isn't common) believes that with clinical symptoms and other tests, the patient has myasthenia, then they are referred to as having Seronegative Myasthenia Gravis.

MuSK falls in a sub-category of seronegative because the antibodies are different from the AcHR antibody. Because of this, the treatments may vary, slightly. MuSK is fairly new, so research is ongoing.

From what you have posted so far, I can see that your doctor is following the route for MuSK patients, and I would say that you are in good hands.

Bebes (Mr. Classic ) said, "...I found that when they saw me as a vulnerable PERSON things went better...."

If you were to ask the RNs on this site, they would tell you they understand that people are vulnerable--terribly frightened about the unknown. Most do their best to try to "lighten" your load. For example,

I had pumpkin pie and coffee, a cupcake, and several other goodies during my treatments. These last few weeks. I felt great after.

They Tried to give me the goodies. For a few days they would have been happy with anything that went down the right tube. And they wanted to give me a lotion massage too. But by that time I just wanted to be left alone (I'm also a grumpy grandpa). I had great nurses and and respiratory and speech therapists. But a hospital is a very busy place and people can get lost in busy places.

Here's wishing you the best, Angel