dr in ny

[Guest guest]

made an appt with a dr legnani (Mt Sinai) as i saw his name affiliated

here - his receptionist or nurse mentioned gluten-free diets but didn't

seem to know what i meant scd wise - i'm switched so A) i'll be with an

scd doc and so many other weird symptoms many have been saying i

should be seen by a research hospital and they are top 10

anyone know of him???

thanks

eileen 6 weeks

[Guest guest]

hey eileen,

never heard of dr legnani is he a gi?

but i do know that mount sinai has some of the best crohn's doctors in

the country. so you should be in good hands. one of the premiere

crohn's surgeons is there as well- forget his name. when i feel

better i'll look up the various names as i am sure they are all

colleagues and maybe you can ask the doctor if he is out of ideas as

to whats wrong for him to discuss your case with other dr's.

jodi

>

> made an appt with a dr legnani (Mt Sinai) as i saw his name affiliated

> here - his receptionist or nurse mentioned gluten-free diets but didn't

> seem to know what i meant scd wise - i'm switched so A) i'll be with an

> scd doc and so many other weird symptoms many have been saying i

> should be seen by a research hospital and they are top 10

> anyone know of him???

> thanks

> eileen 6 weeks

>

[Guest guest]

thanks good idea - i'll take the brainstorming! hope they do it

eileen

> >

> > he is a gi - hoping i never need the surgeon one! feel better

> > thanks

> >

>

[Guest guest]

Hello Eileen,

I see Dr Legnani, I like him - and he is familiar of SCD. he is

supportive and understanding of the diet- that is why I like him

though I was just getting ready to post an inquiry of anyone had a

doctor in new york - who takes insurance and might be more supportive

about getting off medications....I'm interested in getting off the

meds-because i'm not convinced they are helping me and if I was to get

pregnant again I'd like to be med free.

-

scd 13 months

crohn's 1.5yrs

> > >

> > > made an appt with a dr legnani (Mt Sinai) as i saw his name

> affiliated

> > > here - his receptionist or nurse mentioned gluten-free diets but

> didn't

> > > seem to know what i meant scd wise - i'm switched so A) i'll be

> with an

> > > scd doc and so many other weird symptoms many have been saying

> i

> > > should be seen by a research hospital and they are top 10

> > > anyone know of him???

> > > thanks

> > > eileen 6 weeks

> > >

> >

>

[Guest guest]

> just saw him the other day happy he is supportive and he's testing a

> few things - he may not believe the crohns dx on top of celiac???

> we'll see - he doesn't believe in you coming off med??? - i would

> have thought he'd be open to it???

Is he a regular gastroenterologist who is SCD friendly or does he have

some other speciality?

At this point my doc is totally onboard with me doing diet to ameliorate

my UC (even though he really knows nothing about SCD except what

he remembers about what I tell him), as he has

been treating me long enough to know that the

regular meds, while maybe helping to keep me in check, are not

doing anything to put me in remission.

Can you give a little more detail about Dr. Legnani, what makes him

unique, etc.

>

> hoffman is good according to Jodi but a lot if you're not covered -

> mine would pay a smidge I'm sure if i ever end up there - I'm hoping

> I can stay with Dr Legnani and stop doc hopping :-)

> good luck and thanks

> eileen

I looked up Hoffman's website and it seemed to be 1000s of

dollars with all the testing and I don't know what percent

my insurance would pay (though I suppose I could call up

and find out) - and I'm sure they'd also use it as an opportunity

for me to pay up my entire deductible on top of the percent

that they don't want to pay.

Has anyone done the testing at Great Smokey/Genova

Lab? I'm thinking about doing that one, as it seems

quite useful to know which particular virus/fungus/bacteria

is inflicting ones insides. Does anyone know the cost of the test,

or does it also vary? I couldn't find it on the website.

Mara

[Guest guest]

hey mara..

--- In BTVC-SCD , Mara Schiffren

its the same story with my gi.. he has been treating me for years and

the metamorphosis he has gone through with me is quite comical. for

the longest time he'd say " diet has nothing to do with this disease

don't limit yourself " to " jodi, if milk bothers you take lactaid " to

it progressing into " you know many of my CD and UC patients complain

about diary so just cut out the milk. " obviously we had many

conversations in between but today he is like " if this SC diet thing

is helping than by all means stick to it! " so he doesn't really know

anything about it besides what i tell him.. but he has been there

with me through all this horrible suffering that he is happy that i am

feeling better. i told him i think it is a bloody miracle (no pun

intended, heh.) but he knows me so well after all of these years of

never experiencing remission.. he also doesnt think i am some

sensitive drama queen as he actually believes that i am sensitive as

has seen all my crazy allergies to meds and ridiculous consequences of

side effects.. so he is on board with me too.. which makes me happy.

> At this point my doc is totally onboard with me doing diet to ameliorate

> my UC (even though he really knows nothing about SCD except what

> he remembers about what I tell him), as he has

> been treating me long enough to know that the

> regular meds, while maybe helping to keep me in check, are not

> doing anything to put me in remission.

hoffman is seriously expensive particularly the testing as he uses his

own labs for some of the blood testing!! he also sends blood out to

be tested with labs that are (in network) for me. the deductible gets

chewed up pretty quickly there. so yeah, he is more expensive than

most in my experience. i am lucky as my insurance now is very good

and i get a good amount of money reimbursed comparing to hellacious

companies i have dealt with in the past!! i know, i have been there.

> I looked up Hoffman's website and it seemed to be 1000s of

> dollars with all the testing and I don't know what percent

> my insurance would pay (though I suppose I could call up

> and find out) - and I'm sure they'd also use it as an opportunity

> for me to pay up my entire deductible on top of the percent

> that they don't want to pay.

i can't wait for some kind of universal healthcare in this country! i

feel it's a human right.

jodi.

[Guest guest]

Mara he is a reg GI as far as I know (did mention teaching people to

use the givens capsule or something - which I've had don't know if

that makes him " special " ???) but does know the diet and support it -

obviuosly as susan mentioned he does meds too - having only met him

once I was happy to have someone who knew what it was and also said

he wouldn't be surprised to see me come back in a month 5 lbs

heavier instead of trying to give me some maltodextrin drink

that's " so easy to digest people with 2 feet of intestine can handle

it " - and I knew i shouldn't have as it's an illegal I listened but

DUH!!!

anyway another doc to try and answer my mystery is always good and he

said I'm his favorite kind of patient " interesting " lucky me - wish

the puzzle would be solved already!!!

I know what you mean ins wouldn't help me much at hoffmans I'm sure

what were the others you mentioned for testing??

eileen

>

> hey mara..

>

>

> --- In BTVC-SCD , Mara Schiffren <alcibiades@>

>

>

> its the same story with my gi.. he has been treating me for years

and

> the metamorphosis he has gone through with me is quite comical. for

> the longest time he'd say " diet has nothing to do with this disease

> don't limit yourself " to " jodi, if milk bothers you take lactaid " to

> it progressing into " you know many of my CD and UC patients complain

> about diary so just cut out the milk. " obviously we had many

> conversations in between but today he is like " if this SC diet thing

> is helping than by all means stick to it! " so he doesn't really

know

> anything about it besides what i tell him.. but he has been there

> with me through all this horrible suffering that he is happy that i

am

> feeling better. i told him i think it is a bloody miracle (no pun

> intended, heh.) but he knows me so well after all of these years of

> never experiencing remission.. he also doesnt think i am some

> sensitive drama queen as he actually believes that i am sensitive as

> has seen all my crazy allergies to meds and ridiculous consequences

of

> side effects.. so he is on board with me too.. which makes me

happy.

>

>

>

> > At this point my doc is totally onboard with me doing diet to

ameliorate

> > my UC (even though he really knows nothing about SCD except what

> > he remembers about what I tell him), as he has

> > been treating me long enough to know that the

> > regular meds, while maybe helping to keep me in check, are not

> > doing anything to put me in remission.

>

>

>

> hoffman is seriously expensive particularly the testing as he uses

his

> own labs for some of the blood testing!! he also sends blood out to

> be tested with labs that are (in network) for me. the deductible

gets

> chewed up pretty quickly there. so yeah, he is more expensive than

> most in my experience. i am lucky as my insurance now is very good

> and i get a good amount of money reimbursed comparing to hellacious

> companies i have dealt with in the past!! i know, i have been

there.

>

>

>

> > I looked up Hoffman's website and it seemed to be 1000s of

> > dollars with all the testing and I don't know what percent

> > my insurance would pay (though I suppose I could call up

> > and find out) - and I'm sure they'd also use it as an opportunity

> > for me to pay up my entire deductible on top of the percent

> > that they don't want to pay.

>

>

> i can't wait for some kind of universal healthcare in this

country! i

> feel it's a human right.

>

> jodi.

>