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'm curious. Is the MDA the only way to get in touch with doctors that work with MG people? I have an appointment in October, which is a bit away, and was wondering if there is anything else I could do. I find that I'm falling more often, and having more bouts of weakness then what I'm used to, and think seeing a Dr about it would be a good idea. I am hoping that I can sustain this for 3 months until I can be seen.
Many of the DS MG members travel outside their community to see their doctor. You can see if the MGFA has a support groups in your area. http://www.myasthenia.org/CommunitySupport/SupportGroupCalendar.aspx
You can also do another post requesting help to locate a neurologist in your area.
Due to the fact youre having so many problems, I would recommend trying and getting an earlier appointment. You can always keep the MDA appointment and cancel it later or use it for a second opinion.
Wishing you the best.
Bruce
MDA is a great resource for finding doctors. Also, I am not sure where you live but the MGFA has local chapters for various areas across the country. If you have one in your area, they can be a great resource to MG patients.
Another option would be to post what city you live in and maybe another daily strength member can give you the name of a doctor.
Lastly, look at the university hospitals in your area and typically they will have a doctor who specializes in neuromuscular disorders.
Good Luck,
J
Sorry I didn't realize you responded but I second you suggestions.
J
Where do you live?
You can also look up neurologist in your area and call them and ask approximately how many MG patients they currently treat. If your health care has a help line call it and ask for doctors listings.
Kimber
Where do you live near? City, county, region.
There are probably members of this support group, who live near enough to you - to give you a good, personal referral for a MG Specialist.
My example: I live near Portland, ME. But I travel 2 & 1/2 hrs, one way - to go to a Neurologist with MG Experience, in Boston, MASS.
This was after - suffering through years of being handed from local doctor to local doctor, with no one able to unravel my fine mess. (Although I bless the local neuro - who sent me to Boston.)
MANY of our friends, in this support group - travel much further distances than me!
Point being: back then, I did not know - about this support group.
If I had known? Someone would have told me, a lot earlier on, about finding a MG Specialist.
Yes - the MDA has been of help, to people in our group.
Sometimes directly, sometimes with a referral. Don't hesitate to call your local or State chapter of the MDA.
As you have probably read here?
We have a loose definition of a MG expert.
* This Neuro will have some years of experience, treating people with MG. Not a rookie, usually - although I suppose they exist.
* These Neuros are often affiliated with a big-city medical school.
* Teaching hospitals are okay, but are no guarantee. I live 2-miles from a Top-100 Hospital, also a generally fine teaching hospital. This hospital was next-to-useless, when it came to MG.
* A neurological MG Specialist is often an attending physician, meaning: you see the same Neuro at almost all appts.
* A MG Specialist: will be actively carrying at least 10 current MG patients in their practice. The more patients, the better.
A personal example: my Neuro teaches at a Boston medical school, and is a member of the Neurology Dept. at a Boston Hospital.
This Neurology Dept. has 8 neurologists, who carry approx. 200 MG patients. Doing the math? You can see that each Neuro in that practice - carries an average of 25 MG patients.
This is a very general description - of a neurologist - who can be of help to you. Sorry to repeat info, you may already know!
- Ross
The same would hold true for anyone else here. If you want to talk about closer locations via private message that is between the parties on that message.
Kimber