Hey Stephanie,

Did you test positive for the AchR antibodies? Or maybe the musk? Or are you seronegative?

Thanks, I'm confused!!

Ally

p.s. Wow, you have an mg support group? I'm impressed and envious!!

Hi Ally,

I am seronegative but I did have the nerve repetitive test with the needles and with the shocks and that is how I was diagnosed.

I am surprised that you don't have a support group. Have you checked the Masthenia Gravis Foundation of America website?

Stephanie

Okay, thanks for clearing that up!

I live in the Pacific Northwest. We have a chapter but it's very small and meets in another state.

Ally

Hey Jana and Cherry,

Welcome to the group! Sorry I haven't been on a lot lately and have been trying to catch up on posts. Everyone is so helpful and supportive here as you can see. Take care and looking forward to hearing from you both.

Hugs,
Pat

Hi Ally,

I guess I am lucky to be in the Tampa Bay Area since we have Dr. Allan Weiss and our support group meets every month in St. Petersburg occasionally in Tampa.

Have you looked into starting your own group and coordinating it with MGFA? I love my group since we can talk about how everyone is doing with the weather and other things. The group of people on here is very nice too but while I am going through 90 degree weather temperature with the humidity, some of you guys are in 40 degree weather and have no idea what I am going through.

Steph

Hey everyone,

During my recent hospital stay one of the techs told me that an MG group meets the second Saturday of every month at the other hospital in my area and only 5 miles from my home. I called the hospital and got the name and number of the person who chairs them and called him. He said at least 30 people attend and an MG specialists. I'm looking forward to going. He also said if you are unable to drive in, someone would be more that happy to pick you up and take you home. I'm looking forward to next months meeting. I looked in our newspaper every week and never saw it, so I don't think they advertise in the paper, but should. Maybe you could call your local hospitals and ask if they have support group meetings. Worth a shot.

Hugs,
Pat

Wow Pat, sounds great I'm envious!!!
My mg group meet in perth, a 3 hour drive away!!!!!!!!! soooo I don't get up there, they try to hold a big one down my way about every 2 years and we have guest speakers.

Sorry Kate that's it's so far away. I always thought the nearest one was 58 miles away where my neuro and neuro op are. I never thought to call the local hospitals in my area. I wouldn't have known if the tech in the hospital hadn't told me. I don't understand why they don't advertise it in the help group section of the newspapers. Now my only problem is that it is held in the hospital. Makes me a little nervous with the flu going around. Maybe I'll wear a mask. Last Thursday I had a 4 hours nuclear stress test and at least 50% of the workers were wearing one, so I shouldn't look out of place. I'll keep you posted. Take care.

Hugs,
Pat

Pat,

How did the test go? Everything OK?

Sue

Hey Sue,

Yes it whet fine, thank you for asking. The cardio called me yesterday with the results and said everything looked good. No need for the cardiac cath. unless it comes back. He said something happened that night to bring up my blood levels, pain in back, heaviness & difficulty breathing, but they can't find the cause in all the tests that were done. So, that's really good news that my heart & lungs are in good shape! I guess I'll never know what happened, but I sure hope it never happens again. It was very scary to say the least. So I just have to take the Lopressor (BP) med and I see my pcp next month. Thanks again. How are you doing?

Hugs,
Pat