Waiting for diagnosis
 

Hi everyone, waiting for my MRI & MRA & blood work results from yesterday. Had test for Acetylcholine receptor Ab profile which came back negative. Have classic symptoms of Myasthenia Gravis though. Started with arms & legs weak & extremely fatigued all the time. Then about 2 months ago progressed to right eyelid drooping, right eye twitching, head drooping & bobbing, trouble speaking and my jaw would get tired when eating. When I would talk I couldn't think of the next or right word to say and the volume of my voice was way lower. It got worse when I was working 10-11 hrs 6 days a week for a couple of weeks straight. During this time I was also giving my dog insulin shots and taking care of my mom who is 77. Sometimes I can barely get up out of a chair and find it very difficult to walk normal. I guess working overtime all the time ( driving Bobcats, Fork-lift, front-loader etc.. ) is just too much right now. Doctor wrote me a note not to operate heavy equipment, which of course work said "no restrictions", which they sent me home. I could of worked on the sort-line which other people have done before. Seems like they treat everyone different there. Just hate waiting for results to come in.
Well, I feel a little just letting all that out.
Thanks everyone for letting me vent.

Hi, and welcome. I don't know how you were doing all of that even before you got sick. I'm exhausted just imagining it.

If your AChR antibodies came back negative, they should also test your blood for MuSK and LEMS antibodies. Also, I hope you're getting a CT-scan of your thymus gland to make sure you don't have a thymoma.

If you have any trouble getting a diagnosis (because your blood tests negative), the next test would be a single-fiber EMG (SFEMG). A lot of us here who are seronegative (negative blood) were diagnosed on the basis of this test. Not every neurologist can do this test--you have to find one who specializes in neuromuscular diseases.

Your symptoms sure do sound consistent with MG. I hope someone has explained to you that MG can tank really fast. If you suddenly get a lot weaker, or have new symptoms, or have any trouble breathing, or find you can't swallow, these are medical emergencies. Get to an ER or call 911. An MG crisis is life-threatening.

Please feel free to ask questions here! I'm glad you found us.

Abby

I agree, waiting is not so much fun in the shadow of MG. Aside from being downright scary, it's complicated. "Yes" can mean "No", positive can mean negative. I never thought I'd see the day when I woke up to the news that I had a tumor (thymoma) and was actually happy to hear that I need surgery (since that could end my MG). Well, it happened today.

I hope that somehow I will be OK and that this experience could have a silver lining. I'm wishing that for all of us. Somehow, we'll all be OK.

I hate to rain on your parade but removal of thymoma doesn't mean a cure for MG. As you read and learn more you will likely learn that your MG is likely to continue for some years. I hope this is not your case.
Best to you
Mike

Have a test next week to check muscle in my leg. Sometimes have a little trouble breathing, but have allergies & asthma so that could be causing it too.
I can deal with it if it doesn't get too much worse. Also hate the runaround at work. Some people are able to do light duty then others are not allowed. Once I get a diagnosis I can see where things are heading. If they won't accommodate my illness I might have to see about getting on Disability. Probably once I sign up for Disability they'll then give me an easier job to do. Well, thanks for all the replies and always look at the bright side.

Oh Boy! It is hard enough driving a car when you have muscle weakness - never mind operating all that machinery during the course of a whole day!

Good luck with diagnosis and treatment......

Yeah, it was hard just climbing the ladder to get into the loader. Plus watching the other equipment running & people walking around behind you. It's at a Recycling facility, so there's trucks dumping constantly. Also drove home a lot after working with one eye closed. It throws your depth reception way off. And the whole time they (management) thinks your're just lazy.

If some people´s bosses and worst enemies could just experience this type of dreadful weakness for just one single day -
Then that would be enough....:(

Yeah, don't want to wish anything bad on anyone, but if only management had to endure what most of us workers do. At least where I work they seem to be able to leave early anytime they want. If they could be as sick as some us on here for just one day and not be able to leave early they might be more a little more understanding.

Hello,

I hope the doc's determine very soon whether it's MG or not. I know from experience how frustrating the wait can be. I had very similar symptoms to what you're experiencing. My left eye drooped, left leg and left arm were very weak. I walked with a limp due to left leg weakness. I was diagnosed after 5 months of exams, tests, and prodding. Finally, I had a thymectomy performed in April 1997 and went into remission for almost 11 years. In 2008 I started having problems again, although not the exact same symptoms. Finally after diagnosis confirming I was out of remission, I'm on a daily regiment of mestinon. It helps some but I still struggle with my left leg weakness which causes a limp, weak eyelids and fatigue which is exacerbated by the heat in the summer. For some people, mestion isn't necessary after a thymectomy.

I wish you the very best.