Dr. Francomano questionnaire
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Allinknots
Spoonie in Training
Joined: Mon Jun 23, 2008 6:50 pm
Posts: 134
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 Re: Dr. Francomano questionnaire Not meaning to pry, but I don't understand. How did a Connecticut dr. diagnose a different, unrecorded type that Dr. DeFrancomano missed? (Just wondering. OK, so I'm prying, lol.)
Also--did Dr. DeFrancomano dx your mom separately, or did you bring her with you to your app't? (Again, not trying to pry even though I'm prying, lol.)
Thx,
All in Knots
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| Wed Jun 30, 2010 10:02 pm |
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Allinknots
Spoonie in Training
Joined: Mon Jun 23, 2008 6:50 pm
Posts: 134
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Re: Dr. Francomano questionnaire One more thing: While doing my research, I learned that at least three family members have had "placenta acreta" with one of their babies. (I did not have this.) Is that related to EDS in any way that you know of?
Thx,
All in Knots
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| Wed Jun 30, 2010 10:04 pm |
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Allinknots
Spoonie in Training
Joined: Mon Jun 23, 2008 6:50 pm
Posts: 134
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Re: Dr. Francomano questionnaire Blaze wrote: I wasn't dx'd when I went to see her. In fact, I'd been dx'd by a real jerk of a geneticist with 'familial joint instability' and emphatically not EDS and didn't believe him.
Of course, he wasn't willing to go through the list of symptoms I brought, and they only skimmed over my family history instead of doing the in-depth stuff that Dr F does. It couldn't've been a much more different experience from seeing her! (the jerk actually told me that I shouldn't be complaining about the fact that I was more flexibile in my 20s than I was as a child - hah! Because joints that are so flexible they dislocate themselves aren't something to complain about.) ...not that I'm bitter about that first geneticist or anything.
To have Dr F dx me with not just EDS but with classical type felt like real vindication that the stuff I was there for was important! She's really, really awesome and worth every penny of that expensive visit my insurance wouldn't cover.
~Blaze Wow, Blaze, sorry to hear that first geneticist gave you the brush-off. And telling you that you shouldn't complain about increasing flexibility with age? Didn't he think that was something out-of-the-ordinary? And, just wondering: She is a covered dr. on my medical insurance. I'm not sure, however, if that means she'll be covered for an initial screening exam. Was yours not covered because she was an out-of-network dr. for you? Thx, AIK
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| Wed Jun 30, 2010 11:11 pm |
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Saucy
Baby Spoon
Joined: Sun Dec 06, 2009 2:13 pm
Posts: 315
Location: Outside Philly
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Re: Dr. Francomano questionnaire My insurance covered her. The initial eval is a legit visit and shouldn't be an issue with the insurance. If your insurance DOES decide to be jerks, the office visit was billed at $500. Honestly... great deal. Any other office visit with ANY doc is usually $200-250 and they spend like... 20 minutes with you. She spent over 2 hours with me. Even if my insurance decides to go back and deny it, it'll still be worth all the money for it because she gave me 3 additional diagnoses I never had before that my idiot neurologist missed. You could call your insurance and ask them if they'll cover a geneticist visit, too. They'll be able to look it up and find out pretty easily 
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~ Alison ~ 25 ~ Audiology grad student extraordinaire ~
DX: Classical EDS - dx May 2010, cervical DDD, retroflexed odontoid with panus, mild scoliosis/kyphosis/lordosis, craniocervical instability, periodic limb movement disorder, TMJ arthritis... and all the other fun that comes with EDS
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| Thu Jul 01, 2010 6:51 am |
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Blaze
Serving Spoon
Joined: Sun Aug 12, 2007 10:25 pm
Posts: 2119
Location: Philadelphia, PA
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Re: Dr. Francomano questionnaire The first geneticist recognized the increasing flexibility as unusual, he just didn't think it was problematic. Obviously HE hasn't ever dislocated anything, much less the 2/3 of my joints that I have. Grr. I wrote a really, really nasty letter to his department after I got properly diagnosed. His genetic counselor actually told me that he was running late for a meeting, which would certainly explain the reason he didn't take the time to do a proper exam!
My insurance wouldn't cover her because she was out of area. Really frustrating, because it's a Blue Cross insurance, and she takes Blue Cross insurances, but...well, they wouldn't pay, which sucked mightily. It was a lot of money for a student, you know?
~Blaze
_________________
Perhaps we are like race horses - one of the old traditions was to 'handicap' the greatest horses so that they would not run away from the pack. They would pile on lead weights, whatever was needed to get up to the amount of weight the handicapper said they should carry. We're handicapped because otherwise the world could not keep up with us.
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| Thu Jul 01, 2010 5:25 pm |
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Allinknots
Spoonie in Training
Joined: Mon Jun 23, 2008 6:50 pm
Posts: 134
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Re: Dr. Francomano questionnaire I have my app't is scheduled for the end of Sept.
Now for the logistics.
Has anyone (on the board) flown into BWI for this app't? If so, how long of a trip is it from the airport to the dr.'s office? Should I take a cab (or rent a car?)? How long does the dr. app't take? Will she be sending me for any tests while I'm there (i.e Xrays or anything)?
Thanks,
All in Knots
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| Wed Jul 14, 2010 7:38 pm |
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Saucy
Baby Spoon
Joined: Sun Dec 06, 2009 2:13 pm
Posts: 315
Location: Outside Philly
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Re: Dr. Francomano questionnaire No clue about the airport, but IMO, I'd rent a car because the hospital is actually in Towson, not Baltimore. It'd be a LONG ride that would likely cost you more in cab fare than the car rental. It's about 25 milesish... I was with her for 2 hours and she wrote scripts for everything for me. I didn't have anything done at that time.
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~ Alison ~ 25 ~ Audiology grad student extraordinaire ~
DX: Classical EDS - dx May 2010, cervical DDD, retroflexed odontoid with panus, mild scoliosis/kyphosis/lordosis, craniocervical instability, periodic limb movement disorder, TMJ arthritis... and all the other fun that comes with EDS
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| Wed Jul 14, 2010 7:48 pm |
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ReineDeLaSeine14
Crystal Spoon
Joined: Thu Jan 11, 2007 9:25 pm
Posts: 9262
Location: Connecticut...part-time Texan...and French at heart :)
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Re: Dr. Francomano questionnaire when i went we rented a car and then b/c we stayed at the Sheridan in Towson they had a shuttle that would take us to and from the hospital
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~Stephanie~
Unknown genetic disorder causing EDS, Dysautonomia, Asperger's Syndrome and other wacky things (ie. seizures, vision impairments, JRA)
Also have Bipolar I, Borderline Personality Disorder, EDNOS and some other stuff.
I am rarely here so if you wish to speak to me please use my email provided in my profile. Thanks 
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| Fri Jul 16, 2010 7:24 pm |
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Taneli
Serving Spoon
Joined: Tue Nov 30, 2004 2:39 am
Posts: 2301
Location: Connecticut
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Re: Dr. Francomano questionnaire Allinknots, how long did it take to schedule your appointment once you sent your paperwork off? We sent my overnight yesterday and so I'm trying to figure out when I should expect to hear from them.
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~Penelope~
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| Tue Jul 20, 2010 11:09 am |
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Allinknots
Spoonie in Training
Joined: Mon Jun 23, 2008 6:50 pm
Posts: 134
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Re: Dr. Francomano questionnaire Hi, Penelope. They sent me an email in a few days after receiving my packet. I know, I was excited, too--I was hoping to hear from them the day it arrived. But that is just due to my impatience. My app't was scheduled for the end of September. My guess--just a guess--is that they'll probably give you a date in early or mid October. Please post when you get your "date". Hugs, All in Knots
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| Tue Jul 20, 2010 11:26 am |
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Taneli
Serving Spoon
Joined: Tue Nov 30, 2004 2:39 am
Posts: 2301
Location: Connecticut
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Re: Dr. Francomano questionnaire Yeah, I was mostly trying to decide because end of next week I go away for a week and a half and while I'll have my cell phone with me, I won't necessarily be able to answer it all the time so I was trying to figure out if I should call before I leave if I haven't heard anything. Based on your end of September date, I was figuring early to mid October as well. I just hope it turns out to be a useful appointment for me! With the amount of people on this board who see Dr. F we should have a Dr F appointment tracker 
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~Penelope~
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| Tue Jul 20, 2010 3:14 pm |
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Allinknots
Spoonie in Training
Joined: Mon Jun 23, 2008 6:50 pm
Posts: 134
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Re: Dr. Francomano questionnaire Personally, I'd call--just because I'd hate to have to wait a week and a half without knowing a date. Then again, you could have something to look forward to when you get home: opening your email inbox and seeing your app't date!
Hope you have a nice trip,
All in Knots
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| Tue Jul 20, 2010 3:55 pm |
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Taneli
Serving Spoon
Joined: Tue Nov 30, 2004 2:39 am
Posts: 2301
Location: Connecticut
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Re: Dr. Francomano questionnaire Okay, I have an appointment for October 12th!
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~Penelope~
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| Tue Jul 27, 2010 10:08 am |
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