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A MyEpilepsyTeam Member said:

This is the first group I found. It is nice to find people who have common interests. I have been part of the Epilepsy Foundation Advocacy group or many years. though They send out alerts to let people know if Congress will be considering a budget to add to or cut funding for research lessening funding for new medications, and related matters. If we, as people with some relation to Epilepsy can work together, contacting Members of Congress, related Committees etc. could make a difference.

i had never been part of an in person group, because I am far more than a person who has Epilepsy. I think I have things to contribute additionally. I will look at the site you sent, though.

Leslie

posted 4 months ago
A MyEpilepsyTeam Member said:

Prayers continue with FAITH TRUST STRENGTH HOPE and LOVE! Trust GOD Be kind Follow JESUS πŸ™πŸ½ ❀ πŸ‘£πŸΎπŸΎπŸ’šπŸ’œπŸ’›

posted 4 months ago
A MyEpilepsyTeam Member said:

I find this to be very informative and nice to get to know one another. My keeping track of who is who I am.

posted 4 months ago
A MyEpilepsyTeam Member said:

No I dont get fustrated as I am very happy with this site with no problem

posted 4 months ago
A MyEpilepsyTeam Member said:

He explained what the committee was going to tell me (before the surprise results from this brain MRI and PET Scan) in a gateway message when we were talking about the results of the PET Scan because that did not happen until 2 hours after the appointment with him on December 1st. And he had those that run the MEG for Massachusetts General Hospital (the 2 hospitals are partners at the head of the hospital and other medical facilities group known as Mass General Brigham--formerly known as Partners back when it was created -- and still while I was working at MGH 2000-2014.
Unfortunately, the MEG in January showed nothing additional--thus we did not get the confirmation that we were hoping for that all of my epileptic seizures originated from the tumor.
The bad side of finding out of this news on December 1st is that terms like "brain tumor" and the idea of potential "low risk brain surgery" set off alarms for my anxiety (while waiting for my next appointment with my neurologist of February 23rd to find out what the committee discussion results are) so I have been having a lot of seizures with some simple partial seizures mixed in and at least 2 complex partial seizures (witnessed) and a full seizure since December 1st--though I am pretty sure that I had at least one nocturnal seizure there too

posted 4 months ago
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