hi

[curiousforever]

Maybe a newbie. Nothing diagnosed except PN. But when I mentioned how I start seeing double when I'm tired, plus one eyeball will go off by itself and play sometimes :o a doc mentioned MG. a lot of the symptoms seem to match.

I have 4 kids, my hubby is military...all my kids are boys - ages 6, 7, 9, and 15.

Is one symptom where you're "good" for a few days and then you crash and can barely get up off the couch or the bed? That happened a few years ago.

I know that if I carry a few cans in one hand - after about 10 minutes it feels like my arm is going to fall off...

Plus I have a lot of nerve pain...and muscle spasms. I fall over if I close my eyes, and sometimes when I stand up. If I squat down - I can barely get up and if I cross my legs, they both fall asleep to my hips.

Is any of this possibly related?

[GodDreamer2007]

Hi Curious,
Yes, you are describing some things that happen to me. But one thing to remember is that Myasthenia is very much a "Snowflake" disease. It affects our immune
system differently. What happens with me is, for example, I'll clean one day, and the next, I'm so tired, and can't seem to have energy to do anything. I have days when I can't read. My eye lids will get so tired, and I'll have to lay down, or close my eyes for a half an hour, and it will be like that all day. Or, if I have to go to the doctors one day, which is an hours drive from where I live, it takes about two days to feel strong again.
I can relate to your nerve painl. I have that too, but mine is from a back injury. I have permanant nerve damage that goes down both legs. One thing, I've learned is that, if you have one auto immune disease, usually there is another lurking, and then the symptoms overlap each other, making it hard to diagnose which is which.
If I may ask, what is PN? Double vision is a common one amoung mg'ers.
But mine is with my breathing, and generalized weakness. I do get double vision, and it is truly annoying. LOL, sometimes I walk around with one eye closed. Not very attractive, but it works.
What meds do they have you on? Anything?
Best Wishes
Lizzie

[Juanita]

but not all of them. I was diagnosed about 6 years ago with a positive blood test. But I knew something was really wrong just before the diagnosis when I couldn't swing a hoe to plant some seedlings - something I had done easily about 6 months before - I couldn't lift the hoe very high and my arm felt like it was going to fall off after about 2 seedlings. Also, I have made bread all my life, but all of a sudden, I couldn't knead it by hand anymore. My muscles in my upper arms and back just ached after about 1 minute of kneading.

I had double vision when I was first diagnosied, but mestinon and cellcept kept most of my symptoms in control until about 18 months ago - had major crash with breathing and started IVIG about every 6-8 weeks.

As GodDreamer said, we are all different. It doesn't seem to be the same for any two people! But, we do have some things in common, muscle weakness, extreme fatigue and with most of us, eye problems.

Good luck with getting a diagnosis, it can sometimes take a while to get a final diagnosis (6 months for me), but keep hanging in there and keep asking the questions!

[curiousforever]

Thanks.

I'm going to ask for the blood test...

I'm on neurontin, cymbalta, toprol (I have tachycardia), oxycontin, and zocor.

I started the steroids but had some reaction and had to go to urgent care who told me not to take them anymore....

what scares me is i take after my grandma. we both had/get migraines. she died from scleraderma.

[GodDreamer2007]

I'm so sorry about your Mom. Don't give up in finding out what is wrong. It can take a long time to figure it all out. The average person can go anywhere between 2 to 7 years to find out what is wrong with them. So, if it gets too much, come here, vent, and know this is normal.
I was one of those weird rare cases that everyone knew but me. I thought they were all crazy. The only thing I could find on MG was Ocular, and at the time, my eyes were fine, so were my eye lids...so I thought. My daughter said every night around 5pm, my eyelids would sag a little, and she had wondered about them, but I had never looked in my mirror when I was getting tired, just curled up on the sofa. I've since had many times when double vision has been a real pain in the neck.
You may have to have many many tests, and some repeated over and over. I'm sorry to say...
Please keep us updated
love and (((hugs)))
Lizzie

[curiousforever]

Thanks!

I don't think I'd be as frustrated if my pain was controlled. I don't see my doc again till the 1st.