No problem, Simon! I agree that it helps to much to have others who can relate to our experiences- Excellent news that it hasn't really recurred, albeit to a tiny degree!

Hey Simon,

That is scary when something new like that happens out of the blue. With any luck it will just be a one time thing. Take care and keep us posted.

Hugs,
Pat

I see from others that you are not alone, I too get this at times and my Dr. ran all kinds of tests and said the same thing.. must be MG related. The trouble with MG, in my opinion is that if the Dr. doesn't know what it is than it is said to be the MG. So I myself just say OK, and don't report things anymore, gets me to aggrivated to be tested and told "oh it must be the MG" almost like before we are DXed and told it is in our head. I hope it doesn't come back.

Hi. I'm also in radio. Well at least for one more day. Am quitting because I just never know when my speech will be affected. I take Mestinon 60 mgs three timnes a day and a slow release version at bedtime. Most of the time my speech remains in tact. But the stress adds to my MG exhaustion. I also DJ for weddings and that will have to stop as well. My breathing is also very affected. So I'm just trying to deal with all of this. Was offically diagnosed in September. Was hosptialized then and againa couple of weeks ago for a few days. IVIG to help get rid of those bad antibodies. I understand your frustration adn terror. No one knows better than me how scary this is for someone who talks for a living.

Hey Ellen,

Do you find that your speech is affected in the morning too? I wake up and my speech is BAD!

Nicky

Ellen,
I pray that things get better for you. I have been doing well since the episode, so hopefully it is over! Take care and hope the IVIG works well for you.
Simon

Hi Nicky,
I never know when my speech will be become affected. I had a bout with speech a few years ago, before my MG diagnosis. I also have Lupus or something in the Lupus family and the Docs thought it was from that. A lot of guessing with all fo this. But since my MG diagnosis and my taking mestinon, most of the time my speech is OK until I overuse my mouth or just get too tired. My talking for a living days are almost over. Then we'll see what comes next!

Hi Simon,
I've worked for as long as I can rmeember. Been in radio for 34, 35 years. I'm not too sad that I stopped doing my show. Have a few more gigs to do between now and the end of January. Then we'll see. I hope your speech thing was just a once and done. But stay on top of it. I had a problem a few years ago. Went away. thought that part was under control. Then everything and more hit me in Septmeber. Working on controlling everything. Just want to enjoy my life now. Will be applying for Social Security Disability. We'll see what happens. Best of luck.
Ellen

Hey Ellen,

I forgot to welcome you to the group, so welcome!

Anyway, I know- the speech issues totally suck...I read some of your previous posts and I see that you're on Cellcept. How long have you been taking this? I know that it can take a while to kick in.

I'm on prednisone, and my speech is STILL bad. I'm going for a plasma exchange tomorrow as things are spreading to my breathing...I'm also supposed to be starting Imuran soon too but I havne't gone for the preliminary blood tests yet 'cause I haven't been feeling so great...Too tired...

By the way, I also have something like Lupus too...I have the arthritis, and positive blood tests, but I don't have all of the other symptoms so it's not 'official.' It certainly sucks to have so many diseases, but what can you do, that's life (bit mad at life right now, but it'll pass).

Talk to you soon! Feel free to talk about everything and anything...Sorry that some of your last posts were lost in the shuffle...It can happens sometimes!

Nicky

Hi Nicky,

How did the plasma exhange go? Is this the first time for you? I haven't had Also taking a little prednisone but I'll be going off that soon. The breathing thing is what really gets to me. Can't exert myself without my breathing becoming labored. And the Lupus causes me to break out in an itchy rash. Makes me crazy. That's why I'm on Pred right now. My fulltime job now is just going from one Doctors office to another. Fun! I look foward to hearing from you. Again, I hope you're feeling great after the plasma exchange.

Ellen