DR LISA KESSLER PLEASE HELP

PLEASE HELP.
DR KESSLER ,



PLEASE RESPOND  AND GIVE ME SOME OF THE ANSWERS SO MAYBE I CAN BE PREPARED FOR THE DR APPT . THANKS SO MUCH

WHAT DO I NEED TO KNOW ABOUT MY FIRST DRS VISIT WITH A GENETIC DR I HAVE AN APPT IN A WEEK TO BE TESTED FOR EDS  OR WOULD YOU SUGGEST THAT I GET A COMPLETE WORK UP ON MY GENETIC MAKEUP? I KNOW WITH SOME EDS PATIENTS THEY TEND TO BLEED ALOT BUT I HAVE RAYNOALDS AND I BLEED VERY LITTLE , COULD IT BE  THE VASCLUAR TYPE? MY MOTHER AND I SHARE SOME OF  THE SAME SYSTOMS  AND NOW MY DAUGHTER IS SHOWING THEM AS WELL MY MOM DIED AT AGE 46 WITH HER LUNGS THEY COLLAPESED AND MY NANNA WITH THE SAME DEATH BUT LATER IN LIFE, I HAVE BEEN ON PINS AND NEEDLES AND VERY SCARED FOR MY DAUGHTER MYSELF I'M NOT SCARED FOR BUT HER I AM .

[tragdysangel]

please bump this to the genetics expert forums

[momtofourboys]

I am not a doctor, however I have been to see a genetic doctor. I can give you some advice (I don't have what you are referring to) first of all before you go write down a list of all your families medical history, like your parents and sibilings, your kids and your neices adn nephews and I would even include your grandparents even if they are pasesed on.. try to remember how ling they ahve had all of this. they are going to ask you for thier ages (this threw me off as I couldn't remember how old my dad was)  they are gong to ask you when your symptoms first appeared. What test you have done
Surgies and hospitalizatios also count for history.
If you happen to have any of your medical records bring them with you
I am pretty sure they will do bloodwork.
they are also going to look you over and do a thourough exam on you.
you ahve to wait for the results and then go from there.
I am not sure if they will check out your little one on that day or not. they probablly want to do a check and confirmation on you first.
Also if you are at a larger hospital, they might have someone come in and talk to you about helping out with research studies. they usually take just a wee bit more blood..
I am sorry that I am not Dr. Kessler, but just trying to help out a little since I have been ther and know a little of what to expect.
good luck and I pray that you guys are both going to be fine
michelle

[Sunny602]

I just recently went to a geneticist, I think that the above advice it good to follow. I have Ehlers Danlos type III (along with my other multitude of health issues)....The doctor did take some blood, but mostly he did a very thorough head to to assessment and went over my entire family tree, looking for any other family members that went undiagnosed with this. It took about a hour, the examination and questioning. He knew right off the bat that I had EDS III, I was classic for it he said because of my flexibility, joint pain, stretchy skin with all of the scars and odd striations as he put it. I also have a very high palate and am very near sighted, all common to EDS III he said. With type III, it usually won't show on a blood test from what I was told, but will have many physical manifestations.
I hope that you finally get answers....I was finally diagnosed after many years of misdiagnosises, being called crazy or a malingerer, med seeker etc..and only because I happened to stumble on EDS info on the internet. I presented it to my doctor and the rest is history.
Keeping you in my thoughts..Sunny