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...

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Sally101 01/27/2013

Hello,
I'm new to this support group, but I have read all of your posts.
After reading so much I think I should look for a neuromuscular specialist, not a regular neurologist. I'm really not happy with my doctor at this point. I don't think he understands this disease. He told me I shouldn't have any sore feeling in my neck, well I do. I also told him, many times I didn't feel steady when I was walking. He told me I should wear flat shoes.

I live in the Detroit Michigan area. Has anyone been to the University of Michigan in Ann Arbor? This are a teaching hospital and have clincial trials going on. Or can you suggest a neuromuscular specialist in my area.
Many thanks in advance.
Sally 101

deleted_user 01/27/2013

Ask to find a neurologist (of whatever type) that is experienced with MG. MG is quite rare, so don't assume if you ask for a neuromuscular specialist she will be familiar with MG.
A google search brought two clinics that look quite reputable

http://www.henryford.com/body.cfm?id=48893

http://www.med.umich.edu/1libr/aha/ummuscle16.htm

Barbel 01/27/2013

Welcome to the group. It looks like you are headed in the right direction. Finding the right neuro is so important. All the best to you as you search for answers. Barbel

annkemp 01/27/2013

Dr Zachary London
U of M
the best
He is my doc and I love him. He has gotten me to a wonderful place.
Ann

Sally101 01/28/2013

Russ,
Thank you for suggesting Henry Ford. I think Ford and U of M both have a good reputation. Ann Kemp suggested her doctor in Ann Arbor at U of M. I'm so excited to have a doctors name. You give such great advice , thank you again for your input.
Sally

Sally101 01/28/2013

Ann,
WOW, a real name of a tried and true doctor who has treated MG.
I was dreading to go to the clinic in general without any name. After reading ALL your comments to different people you sound like you are doing very well. I plan on calling his office tomorrow, or at least finding out how I can get an appointment with him.

Thank you so much for answerng my plead for help. I live in Livonia so the drive won't be bad at all. Many, many thanks Ann.

RosieSoaring 01/28/2013

Welcome to the group, Sally!!! ElinorA has been in touch with a Neuromuscular Specialist at the U who runs the EMG lab. Another member, Tricia, had recommended this Neuro to Elinor. If I remember the name, I will post it. Otherwise, you may be able to locate him on the site. He has an Eastern European name... Polish, maybe?

'Hopefully, we can give you a hand finding a great doctor!!!

Hugs,
Rosie

RosieSoaring 01/28/2013

Karachunski is the name of the neuromuscular specialist I was talking about.

annkemp 01/29/2013

You will LOVE him(DR. London) You may want to give some symptoms you currently have if you need to get in soon. And if the wait is a while you can get on a cancellation list. Everyone there is awesome.

Ann

Sally101 01/29/2013

Hi Rosie, Thank you for the warm welcome. I can't tell you how much
I have learned from this group. I have already started the process with Dr. London, but will keep Dr.Karachunski name on file.

Thank you again for your input.
Sally

mgot 01/29/2013

U of M has a neuromuscular clinic that handles MG. I like Dr Teener , but did not care for some of the drs who where under him at the time, but that was several years ago and he probably has a new dr under him by now. If you read up on the web site it says in the drs profiles which ones work with MG.

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