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.

Hey, Slashman. Welcome. Do you have any other name you'd like us to call you?

A good MG expert and pulmonologist can tell you the difference between MG and asthma symptoms. Allergies are all about avoidance or the proper treatments. Allergies shouldn't cause symptoms similar to MG at all, although the drugs like Benadryl can make MG worse! I have all of those things too and it's easy for me to tell what is what. If you have MG, which it sounds like you do, there's a lot to learn about it.

Do you have a pulmonologist? If not, and you're diagnosed with MG, get one. You should have breathing tests done for a baseline and then again when you are getting worse. Pulmonologists work with neurologists in a hospital setting, for example, when an MG patient has an MG crisis. An MG crisis is where you can't breathe in or out well, are generally weak or can't swallow well. That's the point, as Abby said, when you need to dial 911.

If you do get worse, it doesn't matter if you don't have an official diagnosis yet. You really need to seek out help in an ER because MG can "tank" pretty fast, especially if you're not on any medications yet.

I know what you mean about "management" but many of them did get there by working those same jobs. And you'll find that a lot of people can't cope with someone they know getting sick because they don't want to contemplate that ever happening to them. They are afraid of being sick, so they "mock" someone who is. Sad.

I hope you do take it very easy. This is not a disease to mess with. It gets worse the more you do (and relatively better with rest and drugs). The more you push, the more it pushes back! ;)

Jmount, I'm glad you are doing relatively okay. I'm sorry you're out of remission. I'll bet it felt great while you were in it!

Slashman, Please keep asking questions. And call your neuro if you get worse or dial 911. Extremes of heat and cold can make MG worse, as well as things like an infection. Get enough sleep and take a nap if you need it! Sleep is like a prescription for MG - without it and you get worse. I hope you'll get answers after your test. Hang in there! It's not fun being sick but MG is manageable. The more knowledge, the better too.

:hug:
Annie

Thanks, Annie. My real name is Bob, but most of my friends call me Slash. Yeah, I'm pretty much taking everything thing easy & one step at a time. Did notice I have trouble with my hands & fingers lately. It's getting hard to pick up objects & hold things. Also harder to move my eyes side to side. I have had breathing tests done before this with my Allergy Doctor. I'll have to keep him & my family well informed with my diagnosis. Thanks for all the replies & well wishes.

Now I'm having trouble with the Neurologist's office They had me take 4 weeks off work & now they won't fill out my FMLA papers. There's no way I'll be able to work so I don't know what to do. Maybe I just contact FMLA. If I contact work they'll probably fire me.

Have FMLA send the paperwork to your doctor's office. This is unreal. You can't be fired for a "disability!" It's against the law.

You might want to remind the neurologist that it IS a federal law, allowing you to take that time off. ;)

I like Slash.

The allergist's office is an "ok" place for breathing tests but what you need when you have MG is MIP and MEP at a pulmy's office. I'm concerned that you are doing this badly. When I had my crisis, I didn't realize that (before being admitted) I couldn't squeeze the fingers of the urgent care doctor.

Don't hesitate to go to the ER for more help. And this stress sure isn't helping! It's so great to feel threatened by your disease, doctor and job situation. Not good.

I hope you get help with all that's going on. Or get someone to help you. Hang in there.

Annie

I'm gonna try and make an appointment with my primary Doctor tomorrow since he referred to the Neurologist. Maybe he can fill the FMLA papers for me. Or knowing him he'll call the Neurologist's office and straighten them out. Might be time to get a better Neurologist.