Re: Welcome, New Member Colleen Innes /Case History--PG Member

[Guest guest]

colleen,

i was thinking about you yesterday...i knew your doc visit was

coming up. was hoping to hear about it.

your doc's comments are odd. i never heard of the doc basing his dx

on the scar...hmmmmm.......but then he gave you tacrolimus

anyway.......strange........he must be thinking it is

autoinflammation, otherwise he would have rx'ed that to you. you

know i used that as my mainstay for topical? it is an

immunomodulator. well, i am not a doc, so i'm going to keep my trap

shut. i liked your comment about the fries...hee, hee, i feel the

same way most of the time.

grand rounds, yes, been to a few myself. that is ideal. do you

know how that works? did they explain? if you can't get a correct

dx as a result of grand rounds, you may as well go packing. i am so

thrilled that you are doing that. and yes, you like me,

are " interesting subjects " . i still go to grand rounds, but for

teaching 2nd year med students at u of m every year, not for dx, but

i did that prior twice. i go dec 16th this year. this is, like, my

5th year to do this. grand rounds is where the multidicipline and

the " team approach " comes in. the lead docs don't dismiss the team

until they come to a consences. with certain medical test results

they might reconvience on your behalf to explore your case deeper.

it is an interesting concept. difficult cases need this approach.

you can tell i am excited for you!

jeff

>

> Thanks for keeping me around. I feel loved.

> I am keeping PG as my presentation because until they figure out

what

> they want to say I have they are treating me as if I have PG even

> though they say I don't have it....I swear the doctors I see all

are a

> few fries short of a happy meal.

> When I find out when I will be part of grand rounds I will let you

> know. They will be presenting me no matter what, it just depends

on

> the date they can fit me in because apparently I am a really

> intresting case.

> ~Colleen

>

[Guest guest]

Jeff,

Apparently PG has a special appearance scar that I do not have. He

showed us his atlas of what the scar PG should leave behind looks

like and of course I don't match. My case doesn't really go with PG

so I guess my dad and I were correct in thinking that it wasn't the

correct diagnoses. As for the tacrolimus in his words " lets treat as

if you have PG until we discover what the real cause is and maybe it

will help that. " The doctor has a few ideas of what I may have all

which other doctors have said no to. His biggest hunch is that I

have Weber-Christian syndrome. The thing is I have apparently been

tested for it already and I don't have it. He says its really hard

to diagnose so he will be reinvestigating that. Don't keep your

trap shut I love hearing what you have to say. You fill me in on all

the things the doctors don't mention which means I don't have to

spend as much time doing research (after all my doctors don't seem

to be the brightest crayons in the box).

I have an idea of how grand rounds work however the doctor did not

explain and things might have a changed a little on how Mt. Sinai

does it since my dad was a med student there (the funny thing is the

drs office was in my dads old dorm room. Same building, same floor,

same side, pretty much the same spot). They better give me a

diagnoses after these grand rounds because if not I may just have to

go pack those bags of mine and visit my friend at UofM and have your

doctor see what he can think of. I know Grand rounds are the best

thing for me but I still don't want to do it. I hate going to the

doctors and having lots of them in one day doesn't make me very

happy. Hopefully after they decide on what test they want to do or

whatever they can be done right afterwards because I will already be

missing my classes all day Thursday (I am done at 12:15) and I don't

have any classes on Friday plus the whole weekend and then I don't

go back to class until 11 on Monday so I will have time to recover

from anything (because if they want to do any procedure that

requires local I have to be placed under conscious sedation or they

just have to go for it without anything which is not fun at all…)

and I can always go spend time at my grandparents or go home with my

dad and not have to recover on campus.

I'll end this rambling before I put you to sleep…

As soon as I find out when I get to go for my day of fun (NOT) I

will let you know.

~Colleen

[Guest guest]

well colleen,

i would have " thought " that one look at the pathology report and

slide and cultures from the biopsy would have clued him in. maybe

he hasn't seen them yet??? i know that the scar is a piece of the

evidence, but to rule out pg, i thought that was a little odd.

i know there are similar conditions that resemble pg. the thing

that gets me is that they are all autoinflammation and the rx tools

in the docs tool bag are all the same. i have looked at pg and

similar autoinflammaton skin conditions and there are only so many

treatments. if oral fk-47 hadn't work for me, i don't know what

they would have done. i was a strange, rare and difficult case, but

very successful...finally (that is why my doc brings me back every

year for grand rounds)...he's kind of a show off too hee, hee. if

this was infection or even a hint of it, there would be NO WAY would

he given you topical fk-47 (tacrolimus). i think the most important

thing is that you get to root cause. obviously there is more going

on and i still think the pg or whatever it is, is a sx of something

else going on inside. your tests certainly indicate that. i have

seen and i think rebecca recently posted a link to it, an article

about pg and the associated diseases to it. some of those i never

heard of. for example, this thing your doc mentioned, weber

christen syndrome.....neva heard of it. you may be more of a rare

case than me! hey, you come out to u of m, i think they could solve

this thing for you. you can stay at my house if you want...hee,

hee. my youngest daughter is 19, you could teach her a thing or

two...lol.

speaking of grand rounds. " normally " , you will go into a room and

small groups of docs and students come in and look at your

condition. they are not allowed to talk to you. you are asked not

to volunteer any information. they may ask to touch it or touch

near it or touch your feet, that is all. then you wait, and wait,

and wait. you will definately get a direction from the team.

speaking of the hospital. on another group i know a person that has

gone there. she tells me the docs are great, but funny how you

mention the physical conditions. she remarked to me, it ain't

exactly a place you want to be admitted to.

good luck! (we have a spare room...hee, hee),

jeff

:

>

> Jeff,

> Apparently PG has a special appearance scar that I do not have. He

> showed us his atlas of what the scar PG should leave behind looks

> like and of course I don't match. My case doesn't really go with

PG

> so I guess my dad and I were correct in thinking that it wasn't

the

> correct diagnoses. As for the tacrolimus in his words " lets treat

as

> if you have PG until we discover what the real cause is and maybe

it

> will help that. " The doctor has a few ideas of what I may have all

> which other doctors have said no to. His biggest hunch is that I

> have Weber-Christian syndrome. The thing is I have apparently been

> tested for it already and I don't have it. He says its really hard

> to diagnose so he will be reinvestigating that. Don't keep your

> trap shut I love hearing what you have to say. You fill me in on

all

> the things the doctors don't mention which means I don't have to

> spend as much time doing research (after all my doctors don't seem

> to be the brightest crayons in the box).

> I have an idea of how grand rounds work however the doctor did not

> explain and things might have a changed a little on how Mt. Sinai

> does it since my dad was a med student there (the funny thing is

the

> drs office was in my dads old dorm room. Same building, same

floor,

> same side, pretty much the same spot). They better give me a

> diagnoses after these grand rounds because if not I may just have

to

> go pack those bags of mine and visit my friend at UofM and have

your

> doctor see what he can think of. I know Grand rounds are the best

> thing for me but I still don't want to do it. I hate going to the

> doctors and having lots of them in one day doesn't make me very

> happy. Hopefully after they decide on what test they want to do or

> whatever they can be done right afterwards because I will already

be

> missing my classes all day Thursday (I am done at 12:15) and I

don't

> have any classes on Friday plus the whole weekend and then I don't

> go back to class until 11 on Monday so I will have time to recover

> from anything (because if they want to do any procedure that

> requires local I have to be placed under conscious sedation or

they

> just have to go for it without anything which is not fun at all…)

> and I can always go spend time at my grandparents or go home with

my

> dad and not have to recover on campus.

> I'll end this rambling before I put you to sleep…

> As soon as I find out when I get to go for my day of fun (NOT) I

> will let you know.

>

> ~Colleen

>

[Guest guest]

Jeff-

He has already seen my path reports but he is basing it on the scar.

Maybe the slides will give him more insight but who knows. I don't

have it in me to keep fighting these stupid medical battles. When I

was told I had PG the doctors weren't even sure they just decided

that's what they were going call it.

Don't you know I want to make your case seem normal and easy that's

my goal in life…just kidding. The doctors try everything because

nothing works. I have had infections grow out my areas oh about a

bajillion times. I only manage to have staph and strep infections in

my leg but its still something. Getting to the root of the problem

would be great BUT I don't want to have to go through all of that

testing. If they want to do any test that require local I think I am

going to make them give me conscious sedation because I am sick of

having to lay there having more pain inflicted on me then anyone

should ever have to have and while I'm out of it they can draw my

blood too because I hate needles with a passion. Ok, Ill shut up

now because I'm really starting to sound like a big baby when it

comes to this stuff (then again I am)

If I had to go to UofM I would most likely stay with my friend who

lives in M or stay with my friend who goes to Uof M. You wouldn't

want me around your daughter…I would be a bad influence.

Still no phone call about my grand rounds yet which is getting me

really frustrated. If you say you will call by Friday you call by

Friday. It doesn't mean you have to have an answer it just shows

respect. I know things come up but I don't do patient very well (not

that you didn't know that by now…). I hate always being on display

(my plastic surgeon presented me at their round table meeting thingy…

atleast this time I get to be there and see the people who are going

to be talking about me.

I refuse to be admitted to the hospital. I hate having to be in one

and I will do anything in my power not to be in one (hell I

convinced the doctors to discharge me and as they were doing it one

time…I went into septic shock so they took away those papers…). I

hear this guy is very good at working with your doctors so if things

happen and I need to be admitted I would see if I could go to the

hospital by my house that I love and the nurses already know me and

its very small and I would have my own room on the Peds(they keep

you there until your 21) but its not going to come to that.

Sorry I have been rambling again…

~Colleen

[Guest guest]

I got the phone call at 6:23pm today I will be at grand rounds on

Thursday.

[Guest guest]

YAHHHH!!!!!

jeff

>

> I got the phone call at 6:23pm today I will be at grand rounds on

> Thursday.

>

[Guest guest]

I had Grand Rounds with the Derm Dept. on Thursday. The resident

called my dad after the talked about me and they want to look through

more of my Pathology and other test results before they say anything

more so I have to make an appt in 3-4 more weeks. Oh how I love the

waiting game... NOT