southeastern PA

We were directed to Michio Hirano, at Columbia University in New York, a neurologist and researcher in this field, and have just begun the diagnosis process with him.  We too have hoped to find someone in the Philadelphia area or closer, and just heard that Drexel University has some, but have not had chance to find out about them.  Maybe the MDA foundation would know of a doc in the Montgomery County area that would be closer?  I'll let you know if I learn more....Blessings...Superman's Girl.....

Hey Southeastern...there is a doctor Luisa Rhas-Estupinan in Philly, but not sure which hospital she works out of.  I was told to call 215-762-6915, and ask for Vivian, to schedule an appointment.  There is also a doctor Deboo, but I heard that she decides if she wants you for a patient, after you submit all your medical records and she reviews them...grrr...that's kinda crappy....I'd go with the other one.  We will stay with Hirano in New York, for now, since we are in mid-diagnosis.  If you would like to call him...212-305-1319....but it is crazy up there.  I wish you God's blessings and will let you know if I find anyone else closer....Take Care...Superman's Girl

Thank you Superman's Girl!  Thank you for the info and for the well wishes!  It is so great to hear from other patients and caregivers.  My neurologist is with the MDA but I can't get her to return phone calls or help with anything for that matter.  Maybe I'll call the MDA or UMDF myself and ask for a list of specialists. I'll look into your suggestions:)  Thanks again.  And God bless.

It seems we wasted so much time being nice and some where along the way, we were forced to become the "sore itchy butt", to those we encounter, who want to put us off.  Don't get me wrong, you can still attract more bees with honey, a sayin from my mom!  When we must leave a msg, or speak to office staff/nurse, we have had every excuse in the book, including lies from an admin asst to the doc, so now, we think about what we want to accomplish with a call/msg, and we state time/day, and expected time of a return call, and specifically what we need, and if it's a real person, we do the same, but, sometimes, you need to make things "seem" worse than they are, to a degree, to the "gate keeper", in order to create the needed response you hope for.  It's very sad to me that it has to be this way, but it is what it is, and maybe these medical people are just so overwhelmed, that some things get lost in the mix.  So, pray for them too, but confirm everything, ask them to repeat anything you do not understand, ask what time you can expect a return call, and if you don't get it within that time frame, that you have permission to become "the sore itchy butt" and keep calling back until you get waht you need!!!   I heard Doctor Phil once say, you teach people how to treat you, and I now believe that to be true through all of this!  If a medical staff person knows you and knows that you can be put off, and this includes the docs, then that will continue to happen.  And that is why I want everyone to question everything and educate yourself about your condition, on your own!  I'm making a list now of things I want answers to when we see Superman's doc again!  I just also heard a comment on a pro-health medical radio show that I listen to and they said the following...."We are all responsible for our own individual health, so do not rest ALL of your trust to others"  You are a gift, a life, and as such, you deserve just as much as everyone else!  You know your own body, what does or does not feel right, so don't back down, if you do not agree!  And educate yourself as much as you can, so you know what you are talking about if you need to stand your ground.  We have learned this the hard way, but I won't get into that story!  Moving forward, we feel it's best to use a mix of honey, persistence, and the sore itchy butt tactic, when necessary!!! LOL!  And please remember, LOYALTY is a gift that is EARNED....NOT GIVEN.  We are loyal to our new primary, because she has earned it, and if, in the future, that changes, then we will find another.  When we are not well, we tend to hold the professionals up on a pedestal, and while some may deserve that, most do not....sad...but true.  It also helps to take someone who will speak up, if you are not feeling up to the challenge!  Don't ever forget that your health is a gift worth it's weight in gold!!!  Don't let anyone take that away from you, ever!   I'll see what I can find too, as there were two people I spoke with from the MDA who were very sweet.  On a lighter note, I used tough love on Superman last night, and dragged him out to a meditation class, with the hope of gaining another coping skill, whenthe fear of all this grips him.  I also made him begin a gratitude journal on Tuesday evening, and I began one as well, to help us try to remember to live "in the moment".  I wish you peace and love and health....and a smile....Blessings....Superman's Girl           

Superman's Girl,

Reading your words, I can tell you are a very strong woman and I'm glad Superman has you for a copioliot on this journey.  I think that your idea of a gratitude journal is a great one.  And although this disease is...well it sucks, it will leave you both feeling at times frustrated, scared, desperate, angry, and many other bad things, I think someday in the future when you look back on your journal entries, you'll find that it can bring many blessings too.  Good things.  Like the ability to appreciate so many "little things" that most people take for granted.  And a strength that is acquired only from having lived such a challenging life (I think mito helps to make your soul grow!).  You know what else, it's because of this disease that I've been able to see goodness in other people, a goodness that I probably otherwise wouldn't have experienced.  Just when I start to lose faith in the human condition, somebody somehow reminds me that people are good.  And people do care about each other.  And communities, and families, can come together to help each other.  There are so many miracles and so many beautiful things to see every day, we just have to remember to always look for them.  And it seems to me that this disease, this challenging life I'm meant to live, brings more miracles and brighter more beautiflul things to see. 

So I just wanted to say that I think you are looking at things the right way, in regards to staying positive and looking for blessings, and in regards to educating yourself, and being active in your/his health care.  I've always been one to want to learn as much as I can about what's happening to my body.  And I've always been one to ask questions and work with doctors, make my own informed decisions, share research with doctors and speak up when I know a mistake is about to be made.  But I guess lately, i've been feeling...worn down.  By mito, and by doctors.  Because of where I live, it's not very easy for me to find new/replacement doctors.  Good news:  I'm angry now!  I'm gonna use that anger as a feul to make things change...for the better.  I am going to find a mito specialist, someone who can help with my other doctors.  And I'm going to learn as much as I can to improve my health in anyway possible.  Thanks for your pep talk.  Your words were a reminder to me.  They reminded me of who I used to be, and who I need to get back to being.  I completely agree with everything you say, and I only wish EVERYBODY, mito or not, could be as proactive and involved in their own health care (or the care of those they love) as you have learned to be!  Empowerment!