I just got diagnosed.
 

Hi, I really don't understand MG. I read about it but it is very confusing to me. My Neuro gave the repetitive nerve test and diagnosed me pretty much on that. He took bloodwork, one came back about AB's and it was ok. He said the other would possibly take a month. Do you guys know what kind of blood test that is? He is not very talkative at this point. I think he is just waiting until everything comes in. He did start me on meds. The generic of Mesitionin? I do feel somewhat better now. I just had the chest xray for the thyoma check. Can anyone out there give me some ideas of what the future holds for me, I am 49. I am raising 2 handicapped children, with the help of my husband. How bad can this get?
I really need to know.

Hi Barbara,

welcome to the forum!!!

You've found a great place to get answers and support.

I can't help you with the bloodtests, I really don't know what would take a month.

Are you on any other medication other than Mestinon??

What are your symptoms? Its so hard to say how your MG will play out, it affects us all so differently. As you will learn, we are all on different medication doses, and have different ranging symptoms, even though they may be very similar.

I was diagnosed 6 years ago, had double vision, , difficulty swallowing, difficulty walking and using my hands arms, I'm sure there are other things, but can't remember at the moment. Now Iam much better, but still do struggle at times.

I hope this has helped a little, be sure to ask lots of questions, even if they seem silly, most of us have been through it all, and may be able to help you.

I hope you get some answers soon
take care
redtail

Hello there!
 

Hi Barbara and welcome to Neurotalk! It is a great site with lots of really smart and caring people who are willing to answer and questions!:D

I am so sorry to hear you have been diagnosed, but recent medical advances have really made it possible to lead pretty normal lives (if there is any doubt, read Kathy's latest blog - it is awesome)........it will not shorten your life. It may make it more trying @ times, but there are lots of meds out here that really help.:D

It sounds like you had the antibody test. I know my test was waaaaaay high, but not everyone has that.

I should tell you that I am recently diagnosed myself (March of last year and had my thymus removed in April...........

Before I was diagnosed, EVERYTHING was hard - everything! I couldn't walk, talk, breathe (only a few times and only for a short time), couldn't even tie my own shoelaces or get out of bed......it was awful! I thought I was going crazy!

You should take heart that you have been diagnosed and given meds NOW - it will make all the difference!:D

The really frustrating thing about MG is that you don't know how you are going to feel from one day to the next........

Remember to rest when you are tired - do not overdo it! That is not the thing to do with MG. You cannot "work though" the tired. It will make you feel worse.

Some people only need Mestinon, while others (like myself) need steroids in order to feel better............

You WILL GET THROUGH THIS! It will be a pain in the butt initially, but with a good neuro, you will thrive and feel better:D

There may be days when you cannot get off the sofa, but there will be others when you feel like superwoman!

You will also need a good support group, since so little is understood about MG and people can be thoughtless @ times.

I just finished a round of IV IG and was able to get all of my housework done, dinner made, the works! That stuff (for me) is go-go juice!

Hang in there and let me know if you need to talk!
Erin:D

I don't really know how long I have had it. I just started getting really tired and weak and my eye drooped. I thought it was my sleep apnea. When my sleep apnea doctor saw me He said I should see a neuro doctor. For years I had many things that the doctors thought were TIA'S. I have nystagmus which developed in my 40s and strabismus in my eyes. I now think it may be due to a muscle weakness in my eyes. My arms and legs seem to be getting weak also. My neck and back are starting to give me some pain and stiffness. This sounds like I am whining I am sure. Sorry

No Barbara it certainly doesn't sound like you are whining!!!!!!!!!!!! It really is a great place to get things off your chest, as we all know what you are going through.

I know when I get tired and muscle fatigued, my neck gets sore and stiff, I think its from trying to hold my head up.

Thanks guys, the information helps

Scary times Barbara; I went through the same last April/May.

I think the bloodtest that takes a month is for the acetylcholine receptor AB (or at least mine took a month or two to get results back. ) The general AB or white cell test is quite quick with results within a day or two. Specific AB tests like the acetylcholine receptor take some incubation time in specialized labs. I don't know how long MuSK AB tests take to come back; you may have had that sent in as well.

Unfortunately, nobody can really tell you how bad it will get for you. Most everybody has different levels of disability caused by MG. It sounds like your neuro is on top of things though, you should be well managed and be able to lead your life mostly unchanged. Expect days when you're dead beat exhausted; listen to your body and rest when that happens. Your husband will need to pick up some more slack and help more than he's used to with your two children and you to get through this.

Best of luck and feel free to shout out any questions you have.

Cheers,

Brian.