Has anyone been treated at Mayo in Rochester or Barnes in St. Louis?
 

A little background...I'm bring treated with Mestinon but we are still waiting for the myasthenia panel. They estimate it won't be done until 9/19 and it was drawn 8/20. I don't see the neurologist again until 9/15. While I'm glad the Mestinon helps, I feel we need to get on top of the disease process. I'm still struggling to get through my day with generalized weakness and I tire very easily. I would like to have the lab work redrawn and sent somewhere else. I put in an appointment request for Mayo (we took one of our children there a few years ago and he was diagnosed with an unrelated condition and we had great experience), so I would like to go there for this probable MG. Another option would be Washington University in St. Louis which is affiliated with Barnes Hospital. From my research, they both seem very reputable when it comes to treating MG and they have a lot of experience with thymectomies.
Does anyone have any experience with either of these places?

Thanks!

LBee

Hi, Lbee. Which clinic are you closest to? You need to also consider the stress that traveling has on a condition. May I ask where you live?

One of the MG experts at Mayo Rochester is Dr. Harper. Mayo can schedule an appt., a SFEMG, and blood tests ahead of time, if you have a referral. Make sure you wear a mask there if you go. The germs are everywhere!

I've heard good things about WU in St. Louis. I've actually been to Mayo Rochester. The differences in approaches tends to be that Mayo wants hard cold evidence of MG, which not everyone has. The Rochester area is geared toward an easy experience for out-of-town patients.

Anyone can draw labs where you live and send them to Mayo. Doctors do that all the time.

Whatever you decide, you have to trust your instincts about what is best for you. Only you know what that is!

Annie

Thanks so much Annie. You've been a big blessing to me in answering my questions. I live in central Missouri, about a 6 hour drive to Rochester and a 2 hour drive to St. Louis.
I thought I would update. I did get an appt. at Mayo, but it is not until October 23. The lady I spoke with said I should call every few days and see if there has been a cancellation, and that I might get it sooner. She said it would be with a doctor that treats MG, but I didn't get his name. I am sure it will be included with the packet they mail to me. So that was a few days ago.
Then my acetylcholine receptor antibody test came back yesterday. Binding and blocking were both negative. This was the lab that was having the instrument problem, and it took them 16 days to get my results. So, I am not too confident in this result, but I also know that it doesn't mean I don't have MG. The good news is, my neurologist is referring me to a neuromuscular doctor in St. Louis. Hopefully, I will get in soon. The Mestinon works like a miracle for me, especially for my walking. I am now taking 30mg every 4 hours. I was an hour late yesterday and I could not walk normally. My mom and I had to run to the store and I required one of those motorized carts. It was quite humbling for someone who was very active and independent before this came on. But, within an hour of my dose, my legs work normally again. I do still tire easily and don't have much endurance. And, I can't talk for very long before I just get tired. My mouth gets tired and I just run out of breath while talking. That is such as weird feeling. I did go in to have my o2 sat checked and had a chest x-ray (I have had a cold and cough), and I checked out okay. Another very interesting effect of the Mestinon is that my ptosis improves and my eyes "match" again. For about three years, I have had slight ptosis in one eye and in the other eye, my lower brow dropped. This was how the ophthalmologist described it when I had it looked at back then. So they were very uneven. But now I am thankful I am looking more symmetrical and less tired! I should share pictures sometime.

What was your O2?

I wouldn't trust the result from a lab that was having instrumentation issues! Blood needs to be evaluated fairly quickly!

Using the disability carts was a big defeat for me too! But I'm so grateful for them. I couldn't walk through a big store.

Mestinon is great, but be cautious of think you're superwoman now! Mestinon only gives a person more acetylcholine (ACh) by blocking the enzyme acetylcholinesterase (AChE). That enzyme cleans up ACh once the job of making muscles strong is done.

You should be off of Mestinon before an EMGs. And any caffeine. Are you on any other drugs?

Second opinions don't hurt (though they might hurt insurance!). You may want to keep the Mayo appt. on the books. But if you drive there, someone else should be doing the driving! If you have MG, driving can tank a person very quickly. More muscle groups are used, and all at once. And we can become so worn out that driving is similar to driving drunk, even while taking Mestinon.

Take it easy until you see someone. And if you become worse, go to the ER! ;)

Annie