Not sure where to post my introduction -- but hello to all. I received a diagnosis a few months ago after a lot of negative testing. I was beginning to think no one understood how horribly tired I was. Then at last I had a SFEMG and it was conclusive -- all the things that were going wrong for me were most likely due to to MG.
I had been having lots of trouble with double vision, three times had prisms added to my prescription. When my eyes went double another time I was sent to a pediatric opthamologist and he did strabismus surgery and it has helped a lot. I still get some double vision, but at least now I can drive.
I had complained of fatigue, trouble swallowing, shortness of breath and while coping with the eyes I saw a cardiologist, neurologist, pulmonologist -- you know how that goes.
Finally the second pulmonologist got me on a cpap machine, which made sleeping possible for me again, but still was struggling with shortness of breath. That's when pulmonologist #2 sent me to neurologist # 2 and we finally got the mystery solved.
Honestly the day we drove to the SFEMG test I told my husband, this is the very last test I am going to do. If they don't find something, I am giving up and just going to -- what, I don't know, but do something that didn't involve embarrassing doctor visits. But as it turned out, the last place you look, you find the answer. 🙄
I am still not in a stable state yet, trying cell cept, Mestinon, and not doing to well with the breathing muscles. I don't know what the future brings, I am pretty scared to be honest. First I was sad, now I am feeling worried about the future.
So enough about me. Any advice is certainly welcome.

Well it is good to hear that you have finally got a clear DX and are being properly cared for.

It will take a while for the Cell Cept to take effect. Mestinon is much quicker but much shorter effect. Pay attention to your breathing muscles, if in any doubt go to the ER. Breathing is the most important thing, and the one thing that can cause serious problems.

Get plenty of rest, and avoid stress.

And if you have any questions ask them here, there is usually someone who has been in that situation before.

Hi, Lily. Welcome to the forum.

I know that MG is overwhelming, but it's a manageable disease, especially if you educate yourself on how it works and what to look out for. And information will help you feel less afraid. MG can be scary, but there are ways to make it better.

There are basically three things that should prompt you to dial 911: An inability to swallow, an inability to take a breath in our out well, and a sudden increase in generalized weakness or an onset of generalized weakness.

As to the swallowing issue in your other post, if you can't do it, you need more help.

It can help to bend your chin downward in order to swallow, but if your swallow isn't working anymore, well, only a doctor will help.

That feeling of something getting stuck in the esophagus is not fun. Neither is squirting liquids out of your nose or choking on air or having what I call a "MG cough attack."

Speaking a lot during the day will make both the bulbar (neck/throat) and breathing muscles weaker. You might have to rest or take a nap after talking too much to recover those muscles. Or take a nap.

Sometimes MG will put you to sleep. There are times after I run an errand when I literally cannot stay awake and my body feels like a lead weight. The body wants what it wants.

Many things can make MG worse. Some drugs can, so go to www.myasthenia.org to learn more. Stress, infections, lack of sleep, and many more things can make MG worse.

The worst thing for me (and many other people) is anything that makes my body hotter, whether that's the weather, an infection, exercising (ha ha, as if that happens much), or a hot shower. There's a physiological reason for that, if you want to know what it is.

Are you taking any other drugs? Are you working? Knowing what can make MG worse does help to keep it under control.

Pushing yourself is a bad idea. The worse you get with MG, the longer it takes to recover. So if you can pace yourself, alternating activity with rest, the better off you'll be in the long run.

Don't hesitate to go to the ER if you get worse. Have an action plan, just in case.

It's a good idea to see a pulmonologist when you feel your breathing is getting worse. They work together with neurologists in a hospital when a MG patient has a crisis. They can also help you fend one off, by knowing what your baseline readings are, doing an overnight oximetry or arterial blood gas if you are getting worse, or just recheck MIP and MEP to see how well you are breathing in or out.

Cellcept can take a while to kick in. If you need more help, you might need IVIG, steroids (temporarily), or plasmapheresis.

Communicate with your neuro whenever you need to, don't just wait for that yearly appt! Get a diagnostic letter from him that you can put in your chart at the hospital or other doctor's offices that you see. Have him come up with a "what if" plan in case you do get worse.

I hope you will get stabilized soon.

Annie

My doctor started me on mesonon for the drooping eyelid and now on cellcept. I am really surprised that he suggested prixms for your glasses. I was told because of the constantly changing nature of the double vision any changes to glasses would not work, and this has definitely been the case. I put up with the double vision for about 4 months until the cellcept started taking effect. From what my doc says, he could effect a much quicker stabilization with prednisone but prefers the slower and safer journey with the celcept. So far he is right on. Be very careful with prednisone...it can cause major damage in your body. Oh and mestonon does nothing for double vision...just the droopy eyelid. I am now off of this and only take it if my eyes start to burn and get droopy. Good luck and hang in there.

I recently was diagnosed with MG. After crisis intial tx was Prednisone 60MG daily for 3 weeks. I literally had a psychotic break, no sleep, no filter on things I said to people was readmitted to MGH and spent week in Psych unit detoxing from Prednisone. This is a nasty drug and needs to be carefully monitored. I have been treated with MEstonin and two sets of infusions and for the last month my symptoms have been negliglible. I developeda severe rash all over my body a week ago and it tis itchy and very uncomfortable. So I am on a medication holiday. Stopped the Mestonin. However the heavy head and extreme fatigue symptoms hve sarted to re occur. I have also found that CellSept is not paid for by my Medicare/United Healthcare Supplemental insurance and that there is a generic. Has anyone had experience wih generic or suffered a horrible rash as a hangover from the prednisone?

I got an ezcema like rash on my legs after my loading dose of IVIG In the hospital... it appeared about a week or so later if I remember correctly. .. Good luck!

finedavid, Do you know what brand of IVIG they used? Sometimes you have to switch to another one in order to not have an adverse reaction.

Yeah, Pred can cause steroid psychosis in some people. Even a very small dose does that to me.

Contact the manufacturer of Cellcept. They might have a financial assistance program. Or call your insurance company and tell them that you can't do steroids, etc. and NEED to have it to survive!!!

How are you doing, Lily?

Annie