Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I am new to this support group. I was diagnosed with MG in April 2012 and have been treated with Mestinon and Prednisone. I just saw my third neurologist today and he is adding Imuran and referring me to a medical school for Thymectomy evaluation.
It does not seem that any of the neurologists I have seen really see a lot of MG patients. Does anyone live in the Dallas/Fort Worth area and have a great neurologist with a lot of experience with MG?
I am also looking for a surgeon who does Thymectomy if anyone knows of one in this area. My insurance will only cover a small portion for the medical school to do the Thymectomy since it is out of network, so I am hoping to find someone who is in my network. My new neurologist does not know of anyone in this area who does Thymectomies anymore other than the medical school.
I appreciate any input anyone has to offer.
It does not seem that any of the neurologists I have seen really see a lot of MG patients. Does anyone live in the Dallas/Fort Worth area and have a great neurologist with a lot of experience with MG?
I am also looking for a surgeon who does Thymectomy if anyone knows of one in this area. My insurance will only cover a small portion for the medical school to do the Thymectomy since it is out of network, so I am hoping to find someone who is in my network. My new neurologist does not know of anyone in this area who does Thymectomies anymore other than the medical school.
I appreciate any input anyone has to offer.
Someone else just recently made the same request you asked. The below link is that post.
http://www.dailystrength.org/c/Myasthenia_Gravis/forum/14989633-dallas-area-neuro-recommendation
Our group created MG News and Links which you can find at the following link. You will find some excellent resources and discussions about MG. Be sure to select view all there are two pages of information. http://www.dailystrength.org/groups/myasthenia-gravis-links-and-news
You are very wise wanting to find a neurologist with MG experience.
Wishing you the best.
Bruce
I have been a nurse for 18 years and have never cared for anyone or met another person with MG. I am so glad to have found others to whom I can relate regarding this most unusual diagnosis with its strange symptoms.
Blessings to everyone here.
Good luck and let us know how you are doing.
Annette
UTSW sees many patients with MG. Dr Dan Dan Meyer at UTSW performed my thymectomy. He presented at the International MG Conference.
There is another from DFW who had her thymectomy with someone else in Dallas. (Baylor/Dallas?) and also sees a neuro at Baylor.
Hopefully your insurance would make an exception due to the fact you must have someone with experience perform this surgery and also to treat your MG. Your current neuro might call or write your insurance company on your behalf. Do you have a thymoma?
Hugs,
sherry
Sherry, I do not have a thymoma according to the CT scan. I am willing to have the thymectomy if it gives me any hope of getting off the meds and back to a normal life at some point in the future. I know nothing is guaranteed, but it is worth the chance.
I work for a hospital, so I have to have any surgeries within that hospital system to get the maximum benefit. I am hopeful that someone within the system can perform my thymectomy.
This is all still so new to me. I didn't even tell anyone about it for the first few months after I was diagnosed. I think I was in denial, but I have finally gotten to the place where I am ready to face it and fight it.
I so appreciate everyone's kindness here. I don't think anyone really understands what this feels like. Yesterday was a really bad day for me, so connecting with others today has really helped me a lot.
Kelley
So glad Dr. Nations is in your plan, if I had known about her I would be seeing her. We are all in this together through the good days and bad.
Annette
So glad Dr. Nations is on your insurance plan! UTSW is the place to be treated.
hugs
sherry
Thanks to everyone for the help and encouragement. Have a wonderful day!
Kelley
~sherry
They only see patients on Wednesdays and Fridays for disorders other than ALS and some other specific disease. I am thankful to not have either of those diseases.
That was really the first available. They want me to have a referral from my doctor anyway. They also want my antibody test and CT results before they will see me. Fortunately, I can provide both of those.
It is kind of crazy, but they said she gets patients from all over because she is one of the few doctors who specialize in MG.
Kelley
How did your SFEMG with Dr. Nations turn out?
I get my SFEMG with her today.
Carly
-sherry
I also have Dr. Nations and luv her! She did mine a few weeks ago. Mine was abnormal....
Hope we can meet, there are several of us here in the Dallas area.
Annette
Dr. Nations was an angel today. I loved her.
I got a negative SFEMG.
Not sure what now. She said they'd call me
after she and my other MD at UT talk.
Carly