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Unread 02-18-2013, 09:45 PM   #11
AnnieB3
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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.


Annie
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Unread 02-20-2013, 08:33 AM   #12
slashman48
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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.
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Unread 02-20-2013, 02:44 PM   #13
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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.
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Unread 02-20-2013, 03:00 PM   #14
AnnieB3
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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

Last edited by AnnieB3; 02-20-2013 at 03:20 PM.
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Unread 02-20-2013, 03:35 PM   #15
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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.
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