[Tracy9]

Today I learned I got my second positive test. I'd had one negative after my first positive and my second neuro was therefore questioning my diagnosis. I simply moved on to another neuro, as my symptoms are so obvious, and the Mestinon helped so much, there was just no question. My first neuro didn't question it at all but he moved to CA so I had to find someone new.

Anyway, after spending a week in the hospital with an exacerbation, my test in the hospital (they were checking the level) was positive. For some freaking odd reason I felt my heart sink. Was I still posessing some level of denial that I didnt' have MG when I know I do? I mean, I just spent a week in the hospital with it!

For some reason, it seems it's bittersweet. They also diagnosed me with asthma in the hospital. My peak flow today in PCP office didn't even make the chart, it was so low. I'm so sick of getting another new diagnosis every time I step into a doctor's office.

Also, my MG has really worsened over the last six months, especially lately. I can no longer unscrew caps off water bottles, open the microwave door, and I'm having much greater difficulty chewing and swallowing.

Happy 50th birthday to me! Shouldn't that have been 80th????

[AnnieB3]

Tracy, Happy 50th! Did anyone get you a tiara? JCPenney has one that's adorable. I think it's a must! It's sort of a tradition in our family.

I know what you mean. So much time and energy is spent getting a diagnosis that, when you finally do have one, you all of a sudden have to shift from the problem solving to the "problem." I don't even know if that makes sense I'm so tired.

I'm sorry you had to spend more time in the hospital. But, as you said, it ended up being a good thing since they retested you.

Two months after I started Mestinon, I got asthma. I'm pretty sure it's from the Mestinon. People who have asthma should be careful using Mestinon. I had bronchial hyperresponsiveness before, so I think the Mestinon just pushed me over the edge. What I've found is that the Flovent I'm on helps my MG, so I really don't mind. I know, it does suck having more than one thing going on.

I hope you'll find a good pulmonologist or allergist to check your asthma yearly or every six months. Did they give you a rescue inhaler? My allergist has also approved an upping of my dose during an upper respiratory infection. It really helps.

I hope you have a neuro now who can talk about other treatments. It doesn't sound like you can get along on Mestinon alone. You aren't pushing yourself too much, are you?

Congrats, I guess. And I'm sorry you feel older than you are. We all totally get that.

Annie

[Tracy9]

No tiara! I refused to even celebrate. No nothin'. Maybe at another time...who knows!

Such helpful information...I did not know Mestinon could cause asthma! And I agree Mestinon and IVIG alone are no longer cutting it for me. I am going to ask neuro about plasmapheresis. I wish he would consider thymectomy. I dont' want more drugs.

I totally overdid it the other night. The problem is I am primarily bedridden so overdoing it means doing just a little. I went to a church event and was in a folding chair or walking around a little for about 3 hours. The next day I was in so much excruciating pain I could not even walk to the bathroom. I was so weak I couldn't even hold my head up while on the toilet, my hubby had to stand in front of me so I could lean my head on his stomach while peeing, lol!

I have to have all of my body supported just about at all times. I mean I can get up for a little bit but not more than like, 1/2 hour max. I can't support my upper body. This really bites.

[AnnieB3]

Tracy, You shouldn't even be sitting or doing anything "out" for one minute let alone three hours. MG goes down hill fast, not slowly, when a person is as bad as you are now. You can't push the activity envelope at all.

You have to get together with your neuro, either by phone or in person immediately. From all that you're saying, you're on the verge of a full blown crisis. Once you go there, it takes so long to come back again. You need more meds. Just get on the phone or, better yet, have someone do most of the talking for you!

What if your hubby wasn't the prince of the world - which I think he must be for caring for you so well - and you were alone? You'd fall to the floor, hit your head and no one would find you!!! I'm being serious. You need help now.

I'm sorry you aren't doing well. It is a scary feeling. Call your neuro and/or dial 911!

Annie