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

Posted October 9, 2006 · October 9, 2006

I have no clue what kind of immune problem I have because the

doctors have taken a break from trying to figure it out. They want

to get my PG undercontrol and then go from there.

>

> Dear Colleen,

>

> On behalf of all our members, welcome to our Erythema Nodosum

Group!

>

> Thanks for sending in your Questionnaire. I have added your

information

> to our " Member Medical History " Files on the Group site and

> posted it below.

>

> You now have Full EN Group privileges.

>

> You are receiving ALL EN Group emails, and you can also go to the

>

> Erythema Nodosum Group Site

> <http://health.groups.yahoo.com/group/erythema_nodosum_Group/> :

>

> http://health.groups.yahoo.com/group/erythema_nodosum_Group/

> <http://health.groups.yahoo.com/group/erythema_nodosum_Group/>

>

> whenever you like by logging on with your Yahoo ID and secret

password.

>

> You do not have to have the group emails delivered to be a member

here.

>

> I'm glad you found us Colleen. Since PG is so rare our PG

Membership is

> much smaller than our EN Membership, but we are a combined group

and

> discuss both disorders at this site. In fact, we discuss all the

> We make up for our small number of PG members by having a very

> knowledgable PG Expert, Jeff. He knows more about PG than most

doctors.

> Welcome to our Friendly Group!

>

> Love,

>

> Idiopathic EN 1968

>

> ********

> Colleen Innes Case History

>

> 10/9/06

>

> 1. Your name and age: Colleen, 18

>

> 2. Your location: At college

>

> 3. Your email address: cinnes@...

> 4. Your Yahoo ID: thedancingimp

>

> 5. Describe your erythema nodosum/PG symptoms or, if you do not

have EN

> or PG, please explain why you wish to join this group.

>

> I have a hole in my calf that will close up, then fill up with

fluid

> and cause a blister that will then burst and an ulcer will be left.

>

> I also had one on my knee. I have small spots on my feet from

where I

> have

> had blister type spots.

>

> 6. List any other health conditions.

>

> I have an immune disorder that the doctors have yet to diagnose.

> It is like HIV/AIDS because of my body has very low T-cell counts

> however I

> don't have HIV/AIDS

>

> 7. State what medications or treatments you take for EN, and their

> effectiveness:

>

> Currently I am on Minocycline 100mg 2x a day (It does not seem

to be

> working.

>

> I am starting my second month of it and if I continue to have

> problems the doctors are going to try something else,

>

> they aren't sure what yet) and I use Cromolyn 4% Versa on top of

the

> ulcers.

>

> 8. When did you first get erythema nodosum or PG?

>

> The doctors believe I got it once I recieved a rug burn but I

wasn't

> diagnosed until 885 days after my first trip to the doctors.

>

> 9. How long have you had erythema nodosum or PG?

>

> a little over 2.5 years(from when I got my rug burn)... Aug 30ths

2006 I

> recieved the diagnoses

>

> 10. Do you agree to treat all EN members with respect? Yes

>

> 11.Do you agree to post NO advertisements for any products or

> services?Yes

>

> 12. How did you find this Group? (Google, Yahoo, Ask Jeeves Search,

> referral from another group or person etc.) I saw it on Google,

yahoo

> dogpile and ask jeeves

>

Posted October 10, 2006 · October 10, 2006

hi colleen,

welcome to the group, i have to say tho that i am sorry you have to

be here, but i am glad you are here now.

are you in the us?

rebecca is much, much to gracious about me knowing more about pg

than some doctors. i had a bad case and spent more time in various

docs offices and at university of michigan medical center than i

care to admit. so i am more of a " professional patient " than

anything! lol. just so you know, my pg comes along with crohns

disease. currently in remission on both now for about 5 years.

but anywho, due to your blood work and prolly a few other choice

diagnostics, they figure there is an immune connection. that could

very well be the case. these cases are difficult, there are a

number of disease that are directly associated with pg. it would be

interesting to find out if you have any elevated inflammation in

your body. there are a few types of blood tests that can answer

that. and then, of course, with my background, i have to ask....do

you have any gi symtoms? if you do, the inflammation along with gi

sx's could indicate a form of ibd.

did you get a biopsy to determine this is pg? do you see a

dermatologist well versed in pg and other autoinflammation diseases

that effect the skin? are you getting wound care? and you getting

adequate help with pain control? i have to ask these questions

because these are the things i did not know about and found out as i

traveled thru a rather painful and long and drawn out healing

process. of course, in my case, being complicated with crohns

disease and just learning that took it's toll as well.

i went thru a lot of treatments because my pg was a particularily

difficult case. i won't go into all those details here, i would be

typing all nite. i would be happy to further discuss with you,

anyway you wish to do that, if that is your desire. i have my leg

pg pics in the photos section if you care to (uh-hum, be prepared)

take a look-see. if you do, please let me know if what you see

looks anything like yours. and, of course, if you can post pics

too, that always helps us in helping you.

take care,

jeff, here to be of assistance,

aied, class of 1999

cd, class of 2000

pg, class of 2001

> >

> > Dear Colleen,

> >

> > On behalf of all our members, welcome to our Erythema Nodosum

> Group!

> >

> > Thanks for sending in your Questionnaire. I have added your

> information

> > to our " Member Medical History " Files on the Group site and

> > posted it below.

> >

> > You now have Full EN Group privileges.

> >

> > You are receiving ALL EN Group emails, and you can also go to the

> >

> > Erythema Nodosum Group Site

> > <http://health.groups.yahoo.com/group/erythema_nodosum_Group/> :

> >

> > http://health.groups.yahoo.com/group/erythema_nodosum_Group/

> > <http://health.groups.yahoo.com/group/erythema_nodosum_Group/>

> >

> > whenever you like by logging on with your Yahoo ID and secret

> password.

> >

> > You do not have to have the group emails delivered to be a

member

> here.

> >

> > I'm glad you found us Colleen. Since PG is so rare our PG

> Membership is

> > much smaller than our EN Membership, but we are a combined group

> and

> > discuss both disorders at this site. In fact, we discuss all the

> related

> > disorders too. Do you have " Primary Immune Deficiency " ?

> > We make up for our small number of PG members by having a very

> > knowledgable PG Expert, Jeff. He knows more about PG than most

> doctors.

> > Welcome to our Friendly Group!

> >

> > Love,

> >

> > Idiopathic EN 1968

Posted October 10, 2006 · October 10, 2006

rebecca darling,

you are much, MUCH too gracious, once again.

bless you,

jeff

> We make up for our small number of PG

members by having a very

> knowledgable PG Expert, Jeff. He knows more about PG than most

doctors.

> Welcome to our Friendly Group!

>

> Love,

>

> Idiopathic EN 1968

Posted October 10, 2006 · October 10, 2006

Hi Jeff

Ill take this one paragraph at a time. Thank you for welcoming me to

the group, I am sorry I have to be here but I am glad that for once

in my life I will have someone understand what I am talking about.

Yes I am in the US, New York state.

Congrats on your 5 year remission!

I do have elevated inflammation in my body.I have had soooo many

different blood test done to check for this or that it's not even

funny. My immune problem is like HIV/AIDS because my body has so few

Tcells along with a few other things, however I do not have

HIV/AIDS. I do not have an GI problems at this point however they do

run in my family so I may have that to look foward to at some point

in time.

I have had more biopsys done then any person should have to have.

After being seen at over a half dozen hospitals and by over 50

doctors with no luck, my immunologist sent my records to a few

doctors and an Immunologist in Boston thought she could help me. We

set up an appoitment with her and she asked if we(we meaning me but

my dad had final say because he was a doctor and I knew he knew

better then me) if two people she worked with could also examine me.

We went and an infectious disease doctor saw me first, followed by

herself and then her dermatologist friend. The ID and immunologist

though I that PG based on my case history, the records I had brought

and the way my leg looked however the derm didn't think so. While

there I had 2 punch biopsies done (with no help from any

medication...not a happy camper)and fluid drawn from my leg and then

over a dozen tubes of blood drawn. I was sent home to wait. When

they finally called me a few weeks later, it was decided that I do

have an atypical form of the atypical version of PG. They put me on

an antibiotic for two months (I am now on month two of it) and it is

not working. I am also using a special cream on my leg. If by the

end of this month my leg is still " pocketing " then they will be

switching my medication, the dr. who diagnosed me wants me to be on

high dose prednisone if the med I am on now isn't work however my

local primary and immunologist said that they wont put me on it for

atleast a year and want to try some other meds.

When everything first started I did go to a wound care center

however it did not do much to help me. After three of my surgeries

they packed my leg with some stuff and if I would have a hole and my

leg would start pocketing they would use probes and jam them in my

leg until they could break the tissue and release whatever was in my

leg. I did whirlpools and still do them sometimes and my mom will

give me leg rubs when my leg really hurts however I am at college

now so I don't even get those anymore unless I go home.

As for pain control I have none. Pain medications don't really help

me at all. One time when they were working on my leg i was given 500

demoral, 60 morphine and 15 versiad and I was still walking and

talking(my first time with any of those drugs.).I have tried mind

over matter and things like that but I always have pain. When I am

having a good day my pain is about a 3 but when my leg is acting up

it will reach around a 7 and any walking brings it up to 9. I found

that my leg also has more pain if it gets too hot or too cold. Any

suggestions on how to make the pain decrease I would LOVE to hear.

Anything you would care to share I would love to hear. It is so nice

to have someone who actually can relate for once. I did look at your

pictures and they look like my leg did way back when. As time goes

by my leg gets blisters which eat away at everything and leave me

with a hole but my leg doesn't really look like yours anymore. I

don't have any pictures of my leg handy (my stuff is at home and im

at college...) However I do have pictures of my MRIs and CTS and

ultrasounds if you want to see what it lookslike from the inside.

~Colleen

> > >

> > > Dear Colleen,

> > >

> > > On behalf of all our members, welcome to our Erythema Nodosum

> > Group!

> > >

> > > Thanks for sending in your Questionnaire. I have added your

> > information

> > > to our " Member Medical History " Files on the Group site and

> > > posted it below.

> > >

> > > You now have Full EN Group privileges.

> > >

> > > You are receiving ALL EN Group emails, and you can also go to

the

> > >

> > > Erythema Nodosum Group Site

> > >

<http://health.groups.yahoo.com/group/erythema_nodosum_Group/> :

> > >

> > > http://health.groups.yahoo.com/group/erythema_nodosum_Group/

> > > <http://health.groups.yahoo.com/group/erythema_nodosum_Group/>

> > >

> > > whenever you like by logging on with your Yahoo ID and secret

> > password.

> > >

> > > You do not have to have the group emails delivered to be a

> member

> > here.

> > >

> > > I'm glad you found us Colleen. Since PG is so rare our PG

> > Membership is

> > > much smaller than our EN Membership, but we are a combined

group

> > and

> > > discuss both disorders at this site. In fact, we discuss all

the

> > related

> > > disorders too. Do you have " Primary Immune Deficiency " ?

> > > We make up for our small number of PG members by having a very

> > > knowledgable PG Expert, Jeff. He knows more about PG than most

> > doctors.

> > > Welcome to our Friendly Group!

> > >

> > > Love,

> > >

> > > Idiopathic EN 1968

>

Posted October 11, 2006 · October 11, 2006

gosh colleen, i don't know where to start,

except to say, we are darn similar. let me interject in your post

because this is complicated and also you are an " old hand " as i am

at this i see. you have been thru a lot! i have some questions too

as i go along. so, let's just take this one step at a time....

>

> Hi Jeff

> Ill take this one paragraph at a time. Thank you for welcoming me

to

> the group, I am sorry I have to be here but I am glad that for

once

> in my life I will have someone understand what I am talking about.

>

> Yes I am in the US, New York state.

you are not far from me, i am in michigan, about 50 miles north of

detroit.

>

> Congrats on your 5 year remission!

thanks! it wasn't easy getting there. much too much pain and

suffering, as you well know.

>

> I do have elevated inflammation in my body.I have had soooo many

> different blood test done to check for this or that it's not even

> funny. My immune problem is like HIV/AIDS because my body has so

few

> Tcells along with a few other things, however I do not have

> HIV/AIDS. I do not have an GI problems at this point however they

do

> run in my family so I may have that to look foward to at some

point

> in time.

i am not really familar with the t cell thing, but the inflammation

is a tall tail sign that there is something going on and since your

t cells are off normal there is an autoinflammation going

on, " likely " the pg is the results of it. i will have to do more

research on the t cell, i forget even what my bloods are except i

know my counts are low, typical of a crohny.

>

> I have had more biopsys done then any person should have to have.

> After being seen at over a half dozen hospitals and by over 50

> doctors with no luck, my immunologist sent my records to a few

> doctors and an Immunologist in Boston thought she could help me.

We

there are some really great medical centers in boston, and

specialize in pg, cd and so forth. i can look them up if you are

interested. think you have some really great medical centers in ny

too. i had to go to u of m to get decent treatment, well, just to

get a proper dx then treatment. i was a month inpatient at u of m

for pg back in march, 2001. that is how serious this was. those

pics you looked at were taken at u of m.

> set up an appoitment with her and she asked if we(we meaning me

but

> my dad had final say because he was a doctor and I knew he knew

> better then me) if two people she worked with could also examine

me.

> We went and an infectious disease doctor saw me first

ohhhh, be very careful there, as you prolly know. pg is not an

infectious disease. be extremely cautious about these docs. do you

know what pathergy is?

, followed by

> herself and then her dermatologist friend. The ID and immunologist

> though I that PG based on my case history, the records I had

brought

> and the way my leg looked however the derm didn't think so. While

> there I had 2 punch biopsies done (with no help from any

> medication...not a happy camper)

oh yes, i can relate. most people have little problem with

biopsies, but i had a major one. people don't realize that a wound

like pg that ulcerates and involves so many nerves can be as painful

as it is. it indeed IS as painful as it looks and then multiply

that by 10!

and fluid drawn from my leg and then

> over a dozen tubes of blood drawn. I was sent home to wait. When

> they finally called me a few weeks later, it was decided that I do

> have an atypical form of the atypical version of PG. They put me

on

> an antibiotic for two months (I am now on month two of it) and it

is

> not working.

not surprised. those docs will strike out on this, so sorry i have

to say that. your pg is not infectious, it is not an infection,

antibiotic will do absolutely nothing for it.

>I am also using a special cream on my leg.<

what is this? antibiotic or an immunomodulator? this is

significant!

If by the

> end of this month my leg is still " pocketing " then they will be

> switching my medication, the dr. who diagnosed me wants me to be

on

> high dose prednisone

uh..., no. i went that route. let me tell you my sad story. 120mg

pred/day. i was almost nuts. i want to tell you my pg only slowed

down slightly........120mg!!!! can you imagine what 120mg of pred

does to a person? OMG!!

if the med I am on now isn't work however my

> local primary and immunologist said that they wont put me on it

for

> atleast a year

uh..., no. not in a year either. stand your ground on this. there

ARE better treatments.

and want to try some other meds.

yes, YES! immunomodulators, both topical and oral.

> When everything first started I did go to a wound care center

> however it did not do much to help me. After three of my surgeries

huh? what? surgeries? surgeries on what...not your leg? no,

don't tell me they did 3 surgeries on your leg!! i asked you if you

know what pathergy is. if the answer to surgery is yes, we should

maybe talk on the phone. this is serious stuff!

> they packed my leg with some stuff and if I would have a hole and

my

> leg would start pocketing they would use probes and jam them in my

> leg until they could break the tissue and release whatever was in

my

> leg.

i don't like the sounds of this. this is not right.

I did whirlpools and still do them sometimes and my mom will

> give me leg rubs when my leg really hurts however I am at college

> now so I don't even get those anymore unless I go home.

> As for pain control I have none. Pain medications don't really

help

> me at all. One time when they were working on my leg i was given

500

> demoral, 60 morphine and 15 versiad and I was still walking and

> talking(my first time with any of those drugs.).I have tried mind

> over matter and things like that but I always have pain. When I am

> having a good day my pain is about a 3 but when my leg is acting

up

> it will reach around a 7 and any walking brings it up to 9. I

found

> that my leg also has more pain if it gets too hot or too cold. Any

> suggestions on how to make the pain decrease I would LOVE to hear.

this one is a tough one. i was on vicodine, morphine-iv drip and

demand, oxyconton and some others. demoral is prolly the best.

wish i had had that one. i have some other ideas, but lets come

back to that. there is a med that helps " distract " you from the

pain, but lets come back to that, that is a subject all in itself.

>

> Anything you would care to share I would love to hear. It is so

nice

> to have someone who actually can relate for once.

oh, i can assure you, i lived a few horrors and i can definitly

say " been there, done that, have t-shirt " .

I did look at your

> pictures and they look like my leg did way back when. As time goes

> by my leg gets blisters which eat away at everything and leave me

> with a hole but my leg doesn't really look like yours anymore.

prolly because of all the " tom foolery " that they have done. can't

believe some of these docs. you definitely need to get to the right

docs, i don't believe you are with the right ones yet. have ideas

on that one too.

I

> don't have any pictures of my leg handy (my stuff is at home and

im

> at college...)

we may need to get some pics. i have one great doc at u of m. i go

back there every december to help them with " grand rounds " . i would

love to ask him about your case and see if he can suggest an

appropriate doc in your area. he belongs to the national derm

organization, i know he knows other docs that can help. i would do

that for you if i have the opportunity.

However I do have pictures of my MRIs and CTS and

> ultrasounds if you want to see what it lookslike from the inside.

> ~Colleen

okay, well, we have some serious issues to deal with here in order

to get you on the right track. this is way, way too painful, not

being addressed properly (as i know, went thru that kind of thing

myself, with the holes in the leg, etc.) and this can't be letting

you concentrate in school. okay, so you have read this, let's start

picking these issues apart in detail, you be the judge on how you

want to do this, but let's limit the topics to subtopics such as:

pathergy

pain

wound care, bandages, etc.

types of docs and treatments, good places to go to find the right

doc, etc.

medications for long term control

ointments

just a few suggestions for topics, lets hack at them one at a time.

you start, take the one you need the most help with first, it can be

different than the above as well.

can you post a pic of yourself in the photos section by chance? i

like to associate my discussion with seeing a face. it helps a

little. i think i have one of me in there.

jeff

Posted October 11, 2006 · October 11, 2006

Hey Jeff,

Ill try to respond back to your comments.

My friend lives in Saginaw Michigan and she has family near the

Detroit area. I may be going to visit this summer.

If I can stay away from doctors, I will. I hate going, I hate

needles, I hate it all.

I saw the ID dr because the immunologist wanted to have all of her

bases covered because they did not know what was going on with me

and she figured while I was in Boston I should make the most of the

trip. He was actually the first one to bring up PG.

Yes, I do know what pathergy is.

I don't know if I mentioned this before or not but I am allergic and

have no numbing reaction from the " caines " . It took over a hundred

stitches before my ex-doctor began to believe me that it wasn't

numbing. He saw a small reaction but didn't think anything of it but

each time I received local the reaction got worse. So when I talk

about with no help from drugs, I mean the biopsies were done with

nothing to numb me up (the saline trick doesn't even help). Needless

to say, after the 2 biopsies were done and stitches were put in

that day I was not a very happy camper (then again can you blame me?)

The antibiotic that I am on is used for anti-inflammatory. Reasoning

behind that was the doctors thought If they could get the

inflammation down it would help my leg out. Well its not doing

either so I can't wait to get off of it. I hate medications and even

more I hate side effects. The cream I am using is Cromolyn 4% Versa

(I actually had to use eye drops at first because the medication is

no longer used as cream so I had to have it compounded just for

me). I have been on pred. for something else and even though I was

on low dose for two weeks, I had the side effects so I know what

will happen and I don't want to do it. If I can stay off of it, I

will. My primary doctor is a really great guy and he values my

thoughts (1. because I have been through all of this, 2. I am

studying bio/premed, 3. I read my dad's medical books).

As for surgeries, I hope your sitting down…

Oct 04-zplasty on the knee

Nov 04-skin graft (rejected and my donor site is still discolored

and when my leg is pocketing it gets discolored)

Jan05-Cut down for PICC line (it took a bit longer to heal then a

normal person but other then that no biggy)

Feb05-Drain placement in calf & I & D knee

May05-I & D calf & knee, Hickman placed

June05-I & D calf

Sept05-drain placement in calf, guided by ultrasound

Oct05(x2)-I & D of calf and knee

Then again, all of this was done before PG being diagnosed so the

doctors didn't know any better.

Ive had a total of 5 hospitals stays (4 for the PG, one because of

septic shock…I can go into more details about any of the stays if

you want)>

The packing actually isn't that bad. It was done to get my leg to

heal from the inside out not outside in as it was doing (even though

my leg still pocketed either way)

Tell me more about this pain med that helps " distract " me because

everything you listed I have tried and have had no luck with. If I

take a pain pill when I am over tired it will sometimes knock me out

for an hour or so but when I wake up the pain is worse. If someone

would tell me they could perform and AKA on my leg for me then I

would do it in heartbeat. The pain keeps getting worse…not better.

*HINT HINT THIS IS WHAT I NEED MOST HELP WITH!!!!!!!!!*

Ill go post a picture of myself on there (I hate the way I look

though…). I am supposed to be working on a paper but instead I have

my leg up on a pile of pillows and my brace on it (the brace is

spring loaded to keep me from going up on my tip toes which always

happens when my leg acts up).

Posted October 11, 2006 · October 11, 2006

colleen,

i understand.

pain control, like i said, tough. what works for some won't work

for others.

first, if i had to do this over, i would go to a pain management

specialist.

the pain has to be attacked on a couple of fronts. i can only

assume, since it is so painful, the pg is ulcerating. the first key

is to get the ulceration to stop.

treatment will do this. i am on methotrexate (immunomodulator) and

remicade (a biological infusion treatment). immunomodulator

ointment topical, the best one i used was prograf. other meds we

tried with varing degrees of success was cyclosplorine, pred (which

i mentioned), oral prograf (fk-47), azathaprine (imuran).

the ulceration was burning hot pain. i used ice packs constantly.

second key, distraction. i used pamelor:

Prescription Drug Pamelor®

Nortriptyline hydrochloride, generic name for the anti-depressant

Pamelor®. Pamelor® is indicated for major depressive disorder.

Pamelor® is sometimes used for generalized anxiety disorders as some

of the other anti-depressants are. Pamelor® is sometimes used for

pain relief of chronic pain conditions that include fibromyalgia and

chronic back pain. Pamelor® is also used for enuresis and attention

deficit hyperactivity disorder (ADHD). Caution should be used, as

Pamelor® has been shown to increase the risk of arrhythmias.

Patients that have cardivascular disease, hyperthyroid, or take

thyroid supplements should use with caution. Pamelor® can sometimes

cause weight gain.

note the middle sentence on pain relief.

third key, localized pain relief. possibly lidocain patches, or

topical used with the dressing.

nothing worked really well for me as long as the wound ulcerated.

once the ulceration stopped, it was a world of difference. that is

why i say the treatment is probably the biggest key of them all

because not only is the ulceration stopped, but you begin to heal.

another key is the search for the root cause. i know once my cd was

treated (with remicade and mtx) the pg went with it.

i understand how sick and tired of all the things associated with

this can be. i was never so misserable in my life. and the drugs

just made we wacky out of my mind. please, bare with it and follow

my advice. i am here to listen, help and support.

for your reading pleasure :-) rebecca has archived some of my posts

and my case history. i believe it is in " files " (rebecca, correct

me if i am wrong). go there and read up on some of the stuff i

wrote. you might find some more ideas i may have forgotten to

mention here. there is a lot to this. i don't know your case that

well, but i have some general guidelines i think are worth

investigating.

colleen, chin up and shins up, you can do it. this group, rebecca

and myself are here to listen and support. i volunteer to do this

because i don't want anyone else to ever go thru what i went thru.

jeff

>

> Hey Jeff,

> Ill try to respond back to your comments.

>

> My friend lives in Saginaw Michigan and she has family near the

> Detroit area. I may be going to visit this summer.

>

> If I can stay away from doctors, I will. I hate going, I hate

> needles, I hate it all.

>

> I saw the ID dr because the immunologist wanted to have all of her

> bases covered because they did not know what was going on with me

> and she figured while I was in Boston I should make the most of

the

> trip. He was actually the first one to bring up PG.

> Yes, I do know what pathergy is.

>

> I don't know if I mentioned this before or not but I am allergic

and

> have no numbing reaction from the " caines " . It took over a hundred

> stitches before my ex-doctor began to believe me that it wasn't

> numbing. He saw a small reaction but didn't think anything of it

but

> each time I received local the reaction got worse. So when I talk

> about with no help from drugs, I mean the biopsies were done with

> nothing to numb me up (the saline trick doesn't even help).

Needless

> to say, after the 2 biopsies were done and stitches were put in

> that day I was not a very happy camper (then again can you blame

me?)

>

> The antibiotic that I am on is used for anti-inflammatory.

Reasoning

> behind that was the doctors thought If they could get the

> inflammation down it would help my leg out. Well its not doing

> either so I can't wait to get off of it. I hate medications and

even

> more I hate side effects. The cream I am using is Cromolyn 4%

Versa

> (I actually had to use eye drops at first because the medication

is

> no longer used as cream so I had to have it compounded just for

> me). I have been on pred. for something else and even though I

was

> on low dose for two weeks, I had the side effects so I know what

> will happen and I don't want to do it. If I can stay off of it, I

> will. My primary doctor is a really great guy and he values my

> thoughts (1. because I have been through all of this, 2. I am

> studying bio/premed, 3. I read my dad's medical books).

>

> As for surgeries, I hope your sitting down…

> Oct 04-zplasty on the knee

> Nov 04-skin graft (rejected and my donor site is still discolored

> and when my leg is pocketing it gets discolored)

> Jan05-Cut down for PICC line (it took a bit longer to heal then a

> normal person but other then that no biggy)

> Feb05-Drain placement in calf & I & D knee

> May05-I & D calf & knee, Hickman placed

> June05-I & D calf

> Sept05-drain placement in calf, guided by ultrasound

> Oct05(x2)-I & D of calf and knee

> Then again, all of this was done before PG being diagnosed so the

> doctors didn't know any better.

> Ive had a total of 5 hospitals stays (4 for the PG, one because of

> septic shock…I can go into more details about any of the stays if

> you want)>

>

> The packing actually isn't that bad. It was done to get my leg to

> heal from the inside out not outside in as it was doing (even

though

> my leg still pocketed either way)

>

> Tell me more about this pain med that helps " distract " me because

> everything you listed I have tried and have had no luck with. If I

> take a pain pill when I am over tired it will sometimes knock me

out

> for an hour or so but when I wake up the pain is worse. If someone

> would tell me they could perform and AKA on my leg for me then I

> would do it in heartbeat. The pain keeps getting worse…not better.

> *HINT HINT THIS IS WHAT I NEED MOST HELP WITH!!!!!!!!!*

>

> Ill go post a picture of myself on there (I hate the way I look

> though…). I am supposed to be working on a paper but instead I

have

> my leg up on a pile of pillows and my brace on it (the brace is

> spring loaded to keep me from going up on my tip toes which always

> happens when my leg acts up).

>

Posted October 11, 2006 · October 11, 2006

Jeff~

I am calling my dad after classes tomorrow (well today) and giving

him your suggestions.

As for the patches I can't use them (note my last response…I am

allergic to " caines " and have no numbing reaction). When my leg has

a big " pocket " the only way to describe the pain is like being

stabbed in the leg over and over again and having someone pour salt

into the fresh wounds. I went from pocketing every 6 months down to

4 months (the picture of my knee was during a good time) down to 2

months then monthly then every three weeks and now within two days

of my leg closing it starts to " repocket " . We are thinking that it

has something to do with the fact that I am on my leg more often now

that I am at college (I go to a very small school so everything is

pretty close). I was having some luck with pressure wraps on my leg

but even now those don't really do much.

As for finding the root of my problem I have been scanned from head

to toe (thanks in part to my septic shock) and poked and prodded by

countless doctors and they still can't figure it out. They are

thinking my immune problem and my PG are playing off of each other

but they can't help the immune problem unless they figure out what

it is but they don't want to work on that until they get the PG

under control but they can't get the PG under control until they

work my immune system. It's pretty much a circle.

I know that all of this is not what I planned on dealing with during

the time which is supposed to be " the best years of my life " but it

is all happening for a reason and in the end I will be a better

person because of all of this. Hopefully, I will also be a much

better doctor because I will be able to relate to my patients and

actually have empathy.

I have started to look through your stuff (during class….shhhh don't

tell my teachers) and by the end of the day I will have read

everything you wrote.

Thank you, for all the support you are offering to me. It is

appreciated more then you will ever know.

~Colleen

Posted October 12, 2006 · October 12, 2006

HI Colleen and Everyone Else!

I have been overwhelmed with so many emails from two different groups, so I

apologize

for not having yet given the " OK " to to introduce me. Please feel free

.

Sorry I haven't contacted you sooner!

I wanted to put my " two cents " worth re: possible " out of the box " treatments

for the PG

that Collen is dealing with:

Since the PG seems, in her case, to be related to a lowered T-cell counts, have

the doctors

considered ways to increase this? Have the T-cell types been looked at? ( I

would presume

the immunologist is doing this.) If there is " nothing " immunologically that can

be done,

what about using a more integrative approach, like Echinacea, which seems to be

a T-cell

stimulant? Have vitamins and other nutrient levels been evaluated? What about

toxic

exposures?

Another resource that has the possibility to affect the immune system is our own

brains.

We can use this in a positive way through guided visualization or hypnotherapy.

The brain

neurotransmitters can communicate with the immune system, since both the immune

and

nerve cells have receptors for each others biochemical products.

What you might try, Colleen, is to find a psychotherapist who is trained in

guided imagery

or visualizataion and hypnotherapy to see if you can help the healing process

this way. I'd

avoid any acupuncture, of course, since this might pose another source of

infection, with a

low T-cell count.

Also, with your school, make SURE you are studying what you WANT to study. This

also

can have a major impact on the immune system and improve your chances for

healing.

I'm so sorry you are dealing with this!

Abby

>

> Dear Colleen,

>

> On behalf of all our members, welcome to our Erythema Nodosum Group!

>

> Thanks for sending in your Questionnaire. I have added your information

> to our " Member Medical History " Files on the Group site and

> posted it below.

>

> You now have Full EN Group privileges.

>

> You are receiving ALL EN Group emails, and you can also go to the

>

> Erythema Nodosum Group Site

> <http://health.groups.yahoo.com/group/erythema_nodosum_Group/> :

>

> http://health.groups.yahoo.com/group/erythema_nodosum_Group/

> <http://health.groups.yahoo.com/group/erythema_nodosum_Group/>

>

> whenever you like by logging on with your Yahoo ID and secret password.

>

> You do not have to have the group emails delivered to be a member here.

>

> I'm glad you found us Colleen. Since PG is so rare our PG Membership is

> much smaller than our EN Membership, but we are a combined group and

> discuss both disorders at this site. In fact, we discuss all the related

> disorders too. Do you have " Primary Immune Deficiency " ?

> We make up for our small number of PG members by having a very

> knowledgable PG Expert, Jeff. He knows more about PG than most doctors.

> Welcome to our Friendly Group!

>

> Love,

>

> Idiopathic EN 1968

>

> ********

> Colleen Innes Case History

>

> 10/9/06

>

> 1. Your name and age: Colleen, 18

>

> 2. Your location: At college

>

> 3. Your email address: cinnes@...

> 4. Your Yahoo ID: thedancingimp

>

> 5. Describe your erythema nodosum/PG symptoms or, if you do not have EN

> or PG, please explain why you wish to join this group.

>

> I have a hole in my calf that will close up, then fill up with fluid

> and cause a blister that will then burst and an ulcer will be left.

>

> I also had one on my knee. I have small spots on my feet from where I

> have

> had blister type spots.

>

> 6. List any other health conditions.

>

> I have an immune disorder that the doctors have yet to diagnose.

> It is like HIV/AIDS because of my body has very low T-cell counts

> however I

> don't have HIV/AIDS

>

> 7. State what medications or treatments you take for EN, and their

> effectiveness:

>

> Currently I am on Minocycline 100mg 2x a day (It does not seem to be

> working.

>

> I am starting my second month of it and if I continue to have

> problems the doctors are going to try something else,

>

> they aren't sure what yet) and I use Cromolyn 4% Versa on top of the

> ulcers.

>

> 8. When did you first get erythema nodosum or PG?

>

> The doctors believe I got it once I recieved a rug burn but I wasn't

> diagnosed until 885 days after my first trip to the doctors.

>

> 9. How long have you had erythema nodosum or PG?

>

> a little over 2.5 years(from when I got my rug burn)... Aug 30ths 2006 I

> recieved the diagnoses

>

> 10. Do you agree to treat all EN members with respect? Yes

>

> 11.Do you agree to post NO advertisements for any products or

> services?Yes

>

> 12. How did you find this Group? (Google, Yahoo, Ask Jeeves Search,

> referral from another group or person etc.) I saw it on Google, yahoo

> dogpile and ask jeeves

>

Posted October 12, 2006 · October 12, 2006

Hi Abby,

I sent a response to this message already but for some reason it

isn't showing up so if it does reappear feel free to ignore this.

I always welcome peoples " two cents " so feel to send it anytime you

please.

The doctors have not done anything to try and increase my T-cell

counts. All of the them tend to be low and the ones that are within

normal limits are right on the edge of being low.

My vitamin levels tend to be normal. My electrolytes, alkaline

phosphates and c-reactive protein tend to be on the high side. I

have not had any toxic exposure.

I do a lot of visualizations. My moms cousin is trained in something

like visualization and she sent me a lot of information and we have

talked a few times. Don't worry about the acupuncture I hate needles

no matter how small they are.

I am a bio major at school and after my second semester (because of

the way my school does things) I will be declaring PreMed. Ever

since I was two I have wanted to be a doctor and now I am one step

closer to my dreams. I am not a fan of my classes right now but

that's because you have to take the general courses before taking

things your interested in. As much as I don't like the material in

my classes most of the teachers make class interesting so it's not

that bad. I am actually doing a presentation in my bio colloquium

class on the 7th of November on PG (figured I could kill two birds

with one stone... get the presentation done AND learn more about

PG).

~Colleen

> >

> > Dear Colleen,

> >

> > On behalf of all our members, welcome to our Erythema Nodosum

Group!

> >

> > Thanks for sending in your Questionnaire. I have added your

information

> > to our " Member Medical History " Files on the Group site and

> > posted it below.

> >

> > You now have Full EN Group privileges.

> >

> > You are receiving ALL EN Group emails, and you can also go to the

> >

> > Erythema Nodosum Group Site

> > <http://health.groups.yahoo.com/group/erythema_nodosum_Group/> :

> >

> > http://health.groups.yahoo.com/group/erythema_nodosum_Group/

> > <http://health.groups.yahoo.com/group/erythema_nodosum_Group/>

> >

> > whenever you like by logging on with your Yahoo ID and secret

password.

> >

> > You do not have to have the group emails delivered to be a

member here.

> >

> > I'm glad you found us Colleen. Since PG is so rare our PG

Membership is

> > much smaller than our EN Membership, but we are a combined group

and

> > discuss both disorders at this site. In fact, we discuss all the

> > We make up for our small number of PG members by having a very

> > knowledgable PG Expert, Jeff. He knows more about PG than most

doctors.

> > Welcome to our Friendly Group!

> >

> > Love,

> >

> > Idiopathic EN 1968

> >

> > ********

> > Colleen Innes Case History

> >

> > 10/9/06

> >

> > 1. Your name and age: Colleen, 18

> >

> > 2. Your location: At college

> >

> > 3. Your email address: cinnes@

> > 4. Your Yahoo ID: thedancingimp

> >

> > 5. Describe your erythema nodosum/PG symptoms or, if you do not

have EN

> > or PG, please explain why you wish to join this group.

> >

> > I have a hole in my calf that will close up, then fill up with

fluid

> > and cause a blister that will then burst and an ulcer will be

left.

> >

> > I also had one on my knee. I have small spots on my feet from

where I

> > have

> > had blister type spots.

> >

> > 6. List any other health conditions.

> >

> > I have an immune disorder that the doctors have yet to diagnose.

> > It is like HIV/AIDS because of my body has very low T-cell counts

> > however I

> > don't have HIV/AIDS

> >

> > 7. State what medications or treatments you take for EN, and

their

> > effectiveness:

> >

> > Currently I am on Minocycline 100mg 2x a day (It does not seem

to be

> > working.

> >

> > I am starting my second month of it and if I continue to have

> > problems the doctors are going to try something else,

> >

> > they aren't sure what yet) and I use Cromolyn 4% Versa on top of

the

> > ulcers.

> >

> > 8. When did you first get erythema nodosum or PG?

> >

> > The doctors believe I got it once I recieved a rug burn but I

wasn't

> > diagnosed until 885 days after my first trip to the doctors.

> >

> > 9. How long have you had erythema nodosum or PG?

> >

> > a little over 2.5 years(from when I got my rug burn)... Aug

30ths 2006 I

> > recieved the diagnoses

> >

> > 10. Do you agree to treat all EN members with respect? Yes

> >

> > 11.Do you agree to post NO advertisements for any products or

> > services?Yes

> >

> > 12. How did you find this Group? (Google, Yahoo, Ask Jeeves

Search,

> > referral from another group or person etc.) I saw it on Google,

yahoo

> > dogpile and ask jeeves

> >

>

Posted October 12, 2006 · October 12, 2006

hi again colleen,

you are a smart 18 year old. i wouldn't mind having you as my

doctor for a moment. you are correct, you and i have learned what

this all about so yeah, you will have the ability to be empathetic.

let me respond by inserting below:

>

> Jeff~

> I am calling my dad after classes tomorrow (well today) and giving

> him your suggestions.

> As for the patches I can't use them (note my last response…I am

> allergic to " caines " and have no numbing reaction).

sorry, you did say that, i forgot. are there alternatives? in

wound care they have synthetic types of dressings now. this might

be worth looking into.

When my leg has

> a big " pocket " the only way to describe the pain is like being

> stabbed in the leg over and over again and having someone pour

salt

> into the fresh wounds. I went from pocketing every 6 months down

to

> 4 months (the picture of my knee was during a good time) down to 2

> months then monthly then every three weeks and now within two days

> of my leg closing it starts to " repocket " . We are thinking that it

> has something to do with the fact that I am on my leg more often

now

> that I am at college (I go to a very small school so everything is

> pretty close).

the " pocket " as you describe. keep in mind that pg is

an " ulcerating containious wound " , meaning in the lower levels of

the derm, the containious tissue, the ulcerating occures. this is

not your typical kind of wound. this is not " stuff on the

surface " . the issue is from......down under, if you will. that is

another reason why pg and infections are so different. they are not

even in the same location in the derm! i know the pain, and you are

exactly correct. that is how it feels, but mine also was burning

big time (prolly what you mean by the salt in the wound). i had the

shooting pain too. aggrevating the nerves by walking just makes it

more uncomfortable. it does not necessarily make the pg worse, it

is immune related, stuff that goes on in our system we can only hope

to understand.

I was having some luck with pressure wraps on my leg

> but even now those don't really do much.

>

> As for finding the root of my problem I have been scanned from

head

> to toe (thanks in part to my septic shock) and poked and prodded

by

> countless doctors and they still can't figure it out. They are

> thinking my immune problem and my PG are playing off of each other

> but they can't help the immune problem unless they figure out what

> it is but they don't want to work on that until they get the PG

> under control but they can't get the PG under control until they

> work my immune system. It's pretty much a circle.

yes, yes, yes. unfortunately, autoinflammation diseases don't have

any really clear cut signs. most docs will be extremely challenged

to come up with a dx. that is why i suggested a really, REALLY good

medical center.........cleveland clinic, mayo clinic, duke, univ of

mich, univ of san diego.....and so forth. the pg is an excellent

indicator to a good doc that knows what to look for. most are

baffled by the pg alone and are stuck at first base. i feel very

strongly about this. the natural methods? those are nice....for

some, buttttttttttttt this is a serious issue and the folks that

have been helped by these methods are small in numbers. i would not

bank on echenacea or elms bark, etc. pulling this out for you.

there are few proven treatments, this is difficult to

treat,....period.

>

> I know that all of this is not what I planned on dealing with

during

> the time which is supposed to be " the best years of my life " but

it

> is all happening for a reason and in the end I will be a better

> person because of all of this. Hopefully, I will also be a much

> better doctor because I will be able to relate to my patients and

> actually have empathy.

yes you will, i have no doubt about that at all!

>

> I have started to look through your stuff (during class….shhhh

don't

> tell my teachers) and by the end of the day I will have read

> everything you wrote.

what i wrote may not work for everyone, but remember, i like you had

a very difficult case. we had to go to some pretty extreme

treatments and a lot of experimenting. you have to be willing to

try different things, do not put all your eggs in one basket.

>

> Thank you, for all the support you are offering to me. It is

> appreciated more then you will ever know.

that makes me feel good that i can help and you recognize it. you

are strong and you will come out of this on top. keep asking

questions and read, read, read...........and..........ask your dad

about going to the leg clinic at cleveland clinic or going to one of

the other top 10-15 schools, some not far from you, that specialize

in these ailments. that was the ONLY way i got mine resolved after

3 years of shear missery.

> ~Colleen

be well,

jeff

aied, class of 1999

cd, class of 2000

pg, class of 2001

>

Posted October 12, 2006 · October 12, 2006

hi again Jeff (are you sick of me yet…No pun intended),

Thank you for the complement.

I don't have much luck with any form of local numbing of my leg.

Many things have been tried and no luck. I guess it is just not to

be.

I use the term " pocket " because that's how my mom started describing

it to people and it stuck. Speaking of them did you ever have pieces

of fat come out with the fluid when your PG was active?

As for a really good medical center I was under the impression (from

my immunologist) that he was sending my records to some of the big

medical centers (johns Hopkins and Duke just to name a few). The one

to get back to us was Brigham's Woman's and Children's Hospital

which is where I received the diagnoses of PG. If you have any

suggestions of a good place in the state of New York (my school is

about 20 minutes from NYC) I would be happy to look into them. I

understand you about the natural methods but right now I will try

everything and everything because I want to get it under control and

get on with my life.

I understand that everyone's case is different but if I can get any

helpful hints I am game.

I have been having this shear misery since the end of March in 2004

and I can't wait for it to end.

~Colleen

> >

> > Jeff~

> > I am calling my dad after classes tomorrow (well today) and

giving

> > him your suggestions.

> > As for the patches I can't use them (note my last response…I am

> > allergic to " caines " and have no numbing reaction).

>

> sorry, you did say that, i forgot. are there alternatives? in

> wound care they have synthetic types of dressings now. this might

> be worth looking into.

>

> When my leg has

> > a big " pocket " the only way to describe the pain is like being

> > stabbed in the leg over and over again and having someone pour

> salt

> > into the fresh wounds. I went from pocketing every 6 months down

> to

> > 4 months (the picture of my knee was during a good time) down to

2

> > months then monthly then every three weeks and now within two

days

> > of my leg closing it starts to " repocket " . We are thinking that

it

> > has something to do with the fact that I am on my leg more often

> now

> > that I am at college (I go to a very small school so everything

is

> > pretty close).

>

> the " pocket " as you describe. keep in mind that pg is

> an " ulcerating containious wound " , meaning in the lower levels of

> the derm, the containious tissue, the ulcerating occures. this is

> not your typical kind of wound. this is not " stuff on the

> surface " . the issue is from......down under, if you will. that

is

> another reason why pg and infections are so different. they are

not

> even in the same location in the derm! i know the pain, and you

are

> exactly correct. that is how it feels, but mine also was burning

> big time (prolly what you mean by the salt in the wound). i had

the

> shooting pain too. aggrevating the nerves by walking just makes

it

> more uncomfortable. it does not necessarily make the pg worse, it

> is immune related, stuff that goes on in our system we can only

hope

> to understand.

>

> I was having some luck with pressure wraps on my leg

> > but even now those don't really do much.

> >

> > As for finding the root of my problem I have been scanned from

> head

> > to toe (thanks in part to my septic shock) and poked and prodded

> by

> > countless doctors and they still can't figure it out. They are

> > thinking my immune problem and my PG are playing off of each

other

> > but they can't help the immune problem unless they figure out

what

> > it is but they don't want to work on that until they get the PG

> > under control but they can't get the PG under control until they

> > work my immune system. It's pretty much a circle.

>

> yes, yes, yes. unfortunately, autoinflammation diseases don't

have

> any really clear cut signs. most docs will be extremely

challenged

> to come up with a dx. that is why i suggested a really, REALLY

good

> medical center.........cleveland clinic, mayo clinic, duke, univ

of

> mich, univ of san diego.....and so forth. the pg is an excellent

> indicator to a good doc that knows what to look for. most are

> baffled by the pg alone and are stuck at first base. i feel very

> strongly about this. the natural methods? those are nice....for

> some, buttttttttttttt this is a serious issue and the folks that

> have been helped by these methods are small in numbers. i would

not

> bank on echenacea or elms bark, etc. pulling this out for you.

> there are few proven treatments, this is difficult to

> treat,....period.

> >

> > I know that all of this is not what I planned on dealing with

> during

> > the time which is supposed to be " the best years of my life " but

> it

> > is all happening for a reason and in the end I will be a better

> > person because of all of this. Hopefully, I will also be a much

> > better doctor because I will be able to relate to my patients

and

> > actually have empathy.

>

> yes you will, i have no doubt about that at all!

> >

> > I have started to look through your stuff (during class….shhhh

> don't

> > tell my teachers) and by the end of the day I will have read

> > everything you wrote.

>

> what i wrote may not work for everyone, but remember, i like you

had

> a very difficult case. we had to go to some pretty extreme

> treatments and a lot of experimenting. you have to be willing to

> try different things, do not put all your eggs in one basket.

> >

> > Thank you, for all the support you are offering to me. It is

> > appreciated more then you will ever know.

>

> that makes me feel good that i can help and you recognize it. you

> are strong and you will come out of this on top. keep asking

> questions and read, read, read...........and..........ask your dad

> about going to the leg clinic at cleveland clinic or going to one

of

> the other top 10-15 schools, some not far from you, that

specialize

> in these ailments. that was the ONLY way i got mine resolved

after

> 3 years of shear missery.

> > ~Colleen

>

> be well,

> jeff

> aied, class of 1999

> cd, class of 2000

> pg, class of 2001

> >

>

Posted October 12, 2006 · October 12, 2006

> > >

> > > Dear Colleen,

> > >

> > > On behalf of all our members, welcome to our Erythema Nodosum

> Group!

> > >

> > > Thanks for sending in your Questionnaire. I have added your

> information

> > > to our " Member Medical History " Files on the Group site and

> > > posted it below.

> > >

> > > You now have Full EN Group privileges.

> > >

> > > You are receiving ALL EN Group emails, and you can also go to the

> > >

> > > Erythema Nodosum Group Site

> > > <http://health.groups.yahoo.com/group/erythema_nodosum_Group/> :

> > >

> > > http://health.groups.yahoo.com/group/erythema_nodosum_Group/

> > > <http://health.groups.yahoo.com/group/erythema_nodosum_Group/>

> > >

> > > whenever you like by logging on with your Yahoo ID and secret

> password.

> > >

> > > You do not have to have the group emails delivered to be a

> member here.

> > >

> > > I'm glad you found us Colleen. Since PG is so rare our PG

> Membership is

> > > much smaller than our EN Membership, but we are a combined group

> and

> > > discuss both disorders at this site. In fact, we discuss all the

> related

> > > disorders too. Do you have " Primary Immune Deficiency " ?

> > > We make up for our small number of PG members by having a very

> > > knowledgable PG Expert, Jeff. He knows more about PG than most

> doctors.

> > > Welcome to our Friendly Group!

> > >

> > > Love,

> > >

> > > Idiopathic EN 1968

> > >

> > > ********

> > > Colleen Innes Case History

> > >

> > > 10/9/06

> > >

> > > 1. Your name and age: Colleen, 18

> > >

> > > 2. Your location: At college

> > >

> > > 3. Your email address: cinnes@

> > > 4. Your Yahoo ID: thedancingimp

> > >

> > > 5. Describe your erythema nodosum/PG symptoms or, if you do not

> have EN

> > > or PG, please explain why you wish to join this group.

> > >

> > > I have a hole in my calf that will close up, then fill up with

> fluid

> > > and cause a blister that will then burst and an ulcer will be

> left.

> > >

> > > I also had one on my knee. I have small spots on my feet from

> where I

> > > have

> > > had blister type spots.

> > >

> > > 6. List any other health conditions.

> > >

> > > I have an immune disorder that the doctors have yet to diagnose.

> > > It is like HIV/AIDS because of my body has very low T-cell counts

> > > however I

> > > don't have HIV/AIDS

> > >

> > > 7. State what medications or treatments you take for EN, and

> their

> > > effectiveness:

> > >

> > > Currently I am on Minocycline 100mg 2x a day (It does not seem

> to be

> > > working.

> > >

> > > I am starting my second month of it and if I continue to have

> > > problems the doctors are going to try something else,

> > >

> > > they aren't sure what yet) and I use Cromolyn 4% Versa on top of

> the

> > > ulcers.

> > >

> > > 8. When did you first get erythema nodosum or PG?

> > >

> > > The doctors believe I got it once I recieved a rug burn but I

> wasn't

> > > diagnosed until 885 days after my first trip to the doctors.

> > >

> > > 9. How long have you had erythema nodosum or PG?

> > >

> > > a little over 2.5 years(from when I got my rug burn)... Aug

> 30ths 2006 I

> > > recieved the diagnoses

> > >

> > > 10. Do you agree to treat all EN members with respect? Yes

> > >

> > > 11.Do you agree to post NO advertisements for any products or

> > > services?Yes

> > >

> > > 12. How did you find this Group? (Google, Yahoo, Ask Jeeves

> Search,

> > > referral from another group or person etc.) I saw it on Google,

> yahoo

> > > dogpile and ask jeeves

> > >

> >

>

Posted October 13, 2006 · October 13, 2006

Hi Dr. Abby,

I have done visualizations for pretty much everything.

As for what made me realize I want to be a doctor. It wasn't anything

big, my dad was a doctor so I think that's what started me off with

that idea (even though he has always tried to talk me out of doing

it). As time went on the more I read and watched I wanted to become a

doctor. Now after all I have been through it has made me realize I

really want to be a doctor because of the way I have been treated by

most of the doctors I saw(which wasn't very nice at all) and I don't

want others to have to experience that.

~Colleen

p.s. thanks for the good luck on my presentation

Posted October 13, 2006 · October 13, 2006

Hey Jeff,

I have some good news, not so good news and some even worse news.

Good news- when I go home for thanksgiving break I am supposed to have

a drs appt (if not sooner) and we are going to try the pain medication

you recommended. My dad thought it was a great idea, he never thought

of it.

Bad news-I have to go on Pred before I try any of the drugs you have

tried. My dad thinks that the doctors don't want to wait the year

anymore so I may be starting it when I go home too. Everyone knows I

don't want to do it but sometimes you have to do things in life you

dont want to.

Worse news-My leg has started to " pocket " again. This is going to make

for a great weekend. As for the icing on the cake, I have two spots

elsewhere on my body that don't look normal and I am afraid that

atleast one of them is going to turn into a PG spot.

~Colleen

Posted October 13, 2006 · October 13, 2006

Colleen,

I too have had PG for 5 years.. and thankfully it is under control at

the moment! Since you mentioned you live near NYC, I strongly

recommend Mt. Sinai.. specifically, Dr. Mark Lebwohl. He has

published extensively on PG and has a sizeable PG practice. He

worked in conjunction with my local derm during the worst of the

situation....

I still get occasional spots.. but they have been superficial and

eventually respond to topical steroids. I have not had any new

ulcers in over a year..

However, the list of other AI diseases has grown .. I have

communicated with Jeff offline as we both suffer from Episcleritis

and AutoImmune Ear disease as well as PG...

Be optimistic .. and very persistent!!!

Kathy

> > >

> > > Jeff~

> > > I am calling my dad after classes tomorrow (well today) and

> giving

> > > him your suggestions.

> > > As for the patches I can't use them (note my last response…I am

> > > allergic to " caines " and have no numbing reaction).

> >

> > sorry, you did say that, i forgot. are there alternatives? in

> > wound care they have synthetic types of dressings now. this

might

> > be worth looking into.

> >

> > When my leg has

> > > a big " pocket " the only way to describe the pain is like being

> > > stabbed in the leg over and over again and having someone pour

> > salt

> > > into the fresh wounds. I went from pocketing every 6 months

down

> > to

> > > 4 months (the picture of my knee was during a good time) down

to

> 2

> > > months then monthly then every three weeks and now within two

> days

> > > of my leg closing it starts to " repocket " . We are thinking that

> it

> > > has something to do with the fact that I am on my leg more

often

> > now

> > > that I am at college (I go to a very small school so everything

> is

> > > pretty close).

> >

> > the " pocket " as you describe. keep in mind that pg is

> > an " ulcerating containious wound " , meaning in the lower levels of

> > the derm, the containious tissue, the ulcerating occures. this

is

> > not your typical kind of wound. this is not " stuff on the

> > surface " . the issue is from......down under, if you will. that

> is

> > another reason why pg and infections are so different. they are

> not

> > even in the same location in the derm! i know the pain, and you

> are

> > exactly correct. that is how it feels, but mine also was burning

> > big time (prolly what you mean by the salt in the wound). i had

> the

> > shooting pain too. aggrevating the nerves by walking just makes

> it

> > more uncomfortable. it does not necessarily make the pg worse,

it

> > is immune related, stuff that goes on in our system we can only

> hope

> > to understand.

> >

> > I was having some luck with pressure wraps on my leg

> > > but even now those don't really do much.

> > >

> > > As for finding the root of my problem I have been scanned from

> > head

> > > to toe (thanks in part to my septic shock) and poked and

prodded

> > by

> > > countless doctors and they still can't figure it out. They are

> > > thinking my immune problem and my PG are playing off of each

> other

> > > but they can't help the immune problem unless they figure out

> what

> > > it is but they don't want to work on that until they get the PG

> > > under control but they can't get the PG under control until

they

> > > work my immune system. It's pretty much a circle.

> >

> > yes, yes, yes. unfortunately, autoinflammation diseases don't

> have

> > any really clear cut signs. most docs will be extremely

> challenged

> > to come up with a dx. that is why i suggested a really, REALLY

> good

> > medical center.........cleveland clinic, mayo clinic, duke, univ

> of

> > mich, univ of san diego.....and so forth. the pg is an excellent

> > indicator to a good doc that knows what to look for. most are

> > baffled by the pg alone and are stuck at first base. i feel very

> > strongly about this. the natural methods? those are nice....for

> > some, buttttttttttttt this is a serious issue and the folks that

> > have been helped by these methods are small in numbers. i would

> not

> > bank on echenacea or elms bark, etc. pulling this out for you.

> > there are few proven treatments, this is difficult to

> > treat,....period.

> > >

> > > I know that all of this is not what I planned on dealing with

> > during

> > > the time which is supposed to be " the best years of my life "

but

> > it

> > > is all happening for a reason and in the end I will be a better

> > > person because of all of this. Hopefully, I will also be a much

> > > better doctor because I will be able to relate to my patients

> and

> > > actually have empathy.

> >

> > yes you will, i have no doubt about that at all!

> > >

> > > I have started to look through your stuff (during class….shhhh

> > don't

> > > tell my teachers) and by the end of the day I will have read

> > > everything you wrote.

> >

> > what i wrote may not work for everyone, but remember, i like you

> had

> > a very difficult case. we had to go to some pretty extreme

> > treatments and a lot of experimenting. you have to be willing to

> > try different things, do not put all your eggs in one basket.

> > >

> > > Thank you, for all the support you are offering to me. It is

> > > appreciated more then you will ever know.

> >

> > that makes me feel good that i can help and you recognize it.

you

> > are strong and you will come out of this on top. keep asking

> > questions and read, read, read...........and..........ask your

dad

> > about going to the leg clinic at cleveland clinic or going to one

> of

> > the other top 10-15 schools, some not far from you, that

> specialize

> > in these ailments. that was the ONLY way i got mine resolved

> after

> > 3 years of shear missery.

> > > ~Colleen

> >

> > be well,

> > jeff

> > aied, class of 1999

> > cd, class of 2000

> > pg, class of 2001

> > >

> >

>

Posted October 13, 2006 · October 13, 2006

Hi Kathy,

Thank you for the recommendation I will talk to my dad about it. Way

back in the day my dad actually was a Med Student at Mt. Sinai.

Congratulations on having your PG under control. I can't wait for

the day when I to can say that.

~Colleen

> > > >

> > > > Jeff~

> > > > I am calling my dad after classes tomorrow (well today) and

> > giving

> > > > him your suggestions.

> > > > As for the patches I can't use them (note my last response…I

am

> > > > allergic to " caines " and have no numbing reaction).

> > >

> > > sorry, you did say that, i forgot. are there alternatives?

in

> > > wound care they have synthetic types of dressings now. this

> might

> > > be worth looking into.

> > >

> > > When my leg has

> > > > a big " pocket " the only way to describe the pain is like

being

> > > > stabbed in the leg over and over again and having someone

pour

> > > salt

> > > > into the fresh wounds. I went from pocketing every 6 months

> down

> > > to

> > > > 4 months (the picture of my knee was during a good time)

down

> to

> > 2

> > > > months then monthly then every three weeks and now within

two

> > days

> > > > of my leg closing it starts to " repocket " . We are thinking

that

> > it

> > > > has something to do with the fact that I am on my leg more

> often

> > > now

> > > > that I am at college (I go to a very small school so

everything

> > is

> > > > pretty close).

> > >

> > > the " pocket " as you describe. keep in mind that pg is

> > > an " ulcerating containious wound " , meaning in the lower levels

of

> > > the derm, the containious tissue, the ulcerating occures.

this

> is

> > > not your typical kind of wound. this is not " stuff on the

> > > surface " . the issue is from......down under, if you will.

that

> > is

> > > another reason why pg and infections are so different. they

are

> > not

> > > even in the same location in the derm! i know the pain, and

you

> > are

> > > exactly correct. that is how it feels, but mine also was

burning

> > > big time (prolly what you mean by the salt in the wound). i

had

> > the

> > > shooting pain too. aggrevating the nerves by walking just

makes

> > it

> > > more uncomfortable. it does not necessarily make the pg

worse,

> it

> > > is immune related, stuff that goes on in our system we can

only

> > hope

> > > to understand.

> > >

> > > I was having some luck with pressure wraps on my leg

> > > > but even now those don't really do much.

> > > >

> > > > As for finding the root of my problem I have been scanned

from

> > > head

> > > > to toe (thanks in part to my septic shock) and poked and

> prodded

> > > by

> > > > countless doctors and they still can't figure it out. They

are

> > > > thinking my immune problem and my PG are playing off of each

> > other

> > > > but they can't help the immune problem unless they figure

out

> > what

> > > > it is but they don't want to work on that until they get the

PG

> > > > under control but they can't get the PG under control until

> they

> > > > work my immune system. It's pretty much a circle.

> > >

> > > yes, yes, yes. unfortunately, autoinflammation diseases don't

> > have

> > > any really clear cut signs. most docs will be extremely

> > challenged

> > > to come up with a dx. that is why i suggested a really,

REALLY

> > good

> > > medical center.........cleveland clinic, mayo clinic, duke,

univ

> > of

> > > mich, univ of san diego.....and so forth. the pg is an

excellent

> > > indicator to a good doc that knows what to look for. most are

> > > baffled by the pg alone and are stuck at first base. i feel

very

> > > strongly about this. the natural methods? those are

nice....for

> > > some, buttttttttttttt this is a serious issue and the folks

that

> > > have been helped by these methods are small in numbers. i

would

> > not

> > > bank on echenacea or elms bark, etc. pulling this out for

you.

> > > there are few proven treatments, this is difficult to

> > > treat,....period.

> > > >

> > > > I know that all of this is not what I planned on dealing

with

> > > during

> > > > the time which is supposed to be " the best years of my life "

> but

> > > it

> > > > is all happening for a reason and in the end I will be a

better

> > > > person because of all of this. Hopefully, I will also be a

much

> > > > better doctor because I will be able to relate to my

patients

> > and

> > > > actually have empathy.

> > >

> > > yes you will, i have no doubt about that at all!

> > > >

> > > > I have started to look through your stuff (during

class….shhhh

> > > don't

> > > > tell my teachers) and by the end of the day I will have read

> > > > everything you wrote.

> > >

> > > what i wrote may not work for everyone, but remember, i like

you

> > had

> > > a very difficult case. we had to go to some pretty extreme

> > > treatments and a lot of experimenting. you have to be willing

to

> > > try different things, do not put all your eggs in one basket.

> > > >

> > > > Thank you, for all the support you are offering to me. It is

> > > > appreciated more then you will ever know.

> > >

> > > that makes me feel good that i can help and you recognize it.

> you

> > > are strong and you will come out of this on top. keep asking

> > > questions and read, read, read...........and..........ask your

> dad

> > > about going to the leg clinic at cleveland clinic or going to

one

> > of

> > > the other top 10-15 schools, some not far from you, that

> > specialize

> > > in these ailments. that was the ONLY way i got mine resolved

> > after

> > > 3 years of shear missery.

> > > > ~Colleen

> > >

> > > be well,

> > > jeff

> > > aied, class of 1999

> > > cd, class of 2000

> > > pg, class of 2001

> > > >

> > >

> >

>

Posted October 13, 2006 · October 13, 2006

that's a great suggestion kathy. i have heard good things from

there. colleen, do be sure whatever doc you go to that he has

access to a " team " if you will. you will likely need other

specialists involved because, as you noted, your pg is likely as a

result of another issue, and " usually " it is.

jeff

> > > >

> > > > Jeff~

> > > > I am calling my dad after classes tomorrow (well today) and

> > giving

> > > > him your suggestions.

> > > > As for the patches I can't use them (note my last response…I

am

> > > > allergic to " caines " and have no numbing reaction).

> > >

> > > sorry, you did say that, i forgot. are there alternatives?

in

> > > wound care they have synthetic types of dressings now. this

> might

> > > be worth looking into.

> > >

> > > When my leg has

> > > > a big " pocket " the only way to describe the pain is like

being

> > > > stabbed in the leg over and over again and having someone

pour

> > > salt

> > > > into the fresh wounds. I went from pocketing every 6 months

> down

> > > to

> > > > 4 months (the picture of my knee was during a good time)

down

> to

> > 2

> > > > months then monthly then every three weeks and now within

two

> > days

> > > > of my leg closing it starts to " repocket " . We are thinking

that

> > it

> > > > has something to do with the fact that I am on my leg more

> often

> > > now

> > > > that I am at college (I go to a very small school so

everything

> > is

> > > > pretty close).

> > >

> > > the " pocket " as you describe. keep in mind that pg is

> > > an " ulcerating containious wound " , meaning in the lower levels

of

> > > the derm, the containious tissue, the ulcerating occures.

this

> is

> > > not your typical kind of wound. this is not " stuff on the

> > > surface " . the issue is from......down under, if you will.

that

> > is

> > > another reason why pg and infections are so different. they

are

> > not

> > > even in the same location in the derm! i know the pain, and

you

> > are

> > > exactly correct. that is how it feels, but mine also was

burning

> > > big time (prolly what you mean by the salt in the wound). i

had

> > the

> > > shooting pain too. aggrevating the nerves by walking just

makes

> > it

> > > more uncomfortable. it does not necessarily make the pg

worse,

> it

> > > is immune related, stuff that goes on in our system we can

only

> > hope

> > > to understand.

> > >

> > > I was having some luck with pressure wraps on my leg

> > > > but even now those don't really do much.

> > > >

> > > > As for finding the root of my problem I have been scanned

from

> > > head

> > > > to toe (thanks in part to my septic shock) and poked and

> prodded

> > > by

> > > > countless doctors and they still can't figure it out. They

are

> > > > thinking my immune problem and my PG are playing off of each

> > other

> > > > but they can't help the immune problem unless they figure

out

> > what

> > > > it is but they don't want to work on that until they get the

PG

> > > > under control but they can't get the PG under control until

> they

> > > > work my immune system. It's pretty much a circle.

> > >

> > > yes, yes, yes. unfortunately, autoinflammation diseases don't

> > have

> > > any really clear cut signs. most docs will be extremely

> > challenged

> > > to come up with a dx. that is why i suggested a really,

REALLY

> > good

> > > medical center.........cleveland clinic, mayo clinic, duke,

univ

> > of

> > > mich, univ of san diego.....and so forth. the pg is an

excellent

> > > indicator to a good doc that knows what to look for. most are

> > > baffled by the pg alone and are stuck at first base. i feel

very

> > > strongly about this. the natural methods? those are

nice....for

> > > some, buttttttttttttt this is a serious issue and the folks

that

> > > have been helped by these methods are small in numbers. i

would

> > not

> > > bank on echenacea or elms bark, etc. pulling this out for

you.

> > > there are few proven treatments, this is difficult to

> > > treat,....period.

> > > >

> > > > I know that all of this is not what I planned on dealing

with

> > > during

> > > > the time which is supposed to be " the best years of my life "

> but

> > > it

> > > > is all happening for a reason and in the end I will be a

better

> > > > person because of all of this. Hopefully, I will also be a

much

> > > > better doctor because I will be able to relate to my

patients

> > and

> > > > actually have empathy.

> > >

> > > yes you will, i have no doubt about that at all!

> > > >

> > > > I have started to look through your stuff (during

class….shhhh

> > > don't

> > > > tell my teachers) and by the end of the day I will have read

> > > > everything you wrote.

> > >

> > > what i wrote may not work for everyone, but remember, i like

you

> > had

> > > a very difficult case. we had to go to some pretty extreme

> > > treatments and a lot of experimenting. you have to be willing

to

> > > try different things, do not put all your eggs in one basket.

> > > >

> > > > Thank you, for all the support you are offering to me. It is

> > > > appreciated more then you will ever know.

> > >

> > > that makes me feel good that i can help and you recognize it.

> you

> > > are strong and you will come out of this on top. keep asking

> > > questions and read, read, read...........and..........ask your

> dad

> > > about going to the leg clinic at cleveland clinic or going to

one

> > of

> > > the other top 10-15 schools, some not far from you, that

> > specialize

> > > in these ailments. that was the ONLY way i got mine resolved

> > after

> > > 3 years of shear missery.

> > > > ~Colleen

> > >

> > > be well,

> > > jeff

> > > aied, class of 1999

> > > cd, class of 2000

> > > pg, class of 2001

> > > >

> > >

> >

>

Posted October 13, 2006 · October 13, 2006

colleen,

okay, you are talking the pamelor. small doses didn't seem to work

well for me, i had to take the max. that tickles me that this

helped...wow.

prednosone......ummmmm....hmmmmmm...i guess i have to ask why. is

there something to prove here? guess i just don't get it. don't

want to sound harsh here, but for a long time, starting ohhhh about

1967, pred was the drug of choice. it was a major break through.

it was first line defense. nowadays, it is not. pred has some

nasty side effects that you could live with the rest of your lift.

if this was a one time deal, meaning the pg would be treated and it

would go away, fine, but you, like me, are not the case. you likely

have other issues and the pg is a result. here is the difference.

you are getting treated for the pg, but there is another issue, and

when that is treated the pg will improve with it. you may have to

stay on treatment a very long time. that is my case, cd cannot be

cured, maybe controlled to some degree, that is all. i don't mean

to " date " your dad, but pred in this case, in my humble opinion (and

don't forget, they started me on it too, ended up at 120mg and it

was needless in the end), is not the first line of defense here.

i guess what i am saying is to ask why. and then share it with me

when you find out, always looking for a learning opportunity. i

hope you understand why my concern.

jeff

>

> Hey Jeff,

> I have some good news, not so good news and some even worse news.

> Good news- when I go home for thanksgiving break I am supposed to

have

> a drs appt (if not sooner) and we are going to try the pain

medication

> you recommended. My dad thought it was a great idea, he never

thought

> of it.

>

> Bad news-I have to go on Pred before I try any of the drugs you

have

> tried. My dad thinks that the doctors don't want to wait the year

> anymore so I may be starting it when I go home too. Everyone knows

I

> don't want to do it but sometimes you have to do things in life

you

> dont want to.

>

> Worse news-My leg has started to " pocket " again. This is going to

make

> for a great weekend. As for the icing on the cake, I have two

spots

> elsewhere on my body that don't look normal and I am afraid that

> atleast one of them is going to turn into a PG spot.

>

> ~Colleen

>

Posted October 13, 2006 · October 13, 2006

Hey Jeff,

I am NOT on the med yet (sorry I didn't make that clear)I wont be

until I have my doctors appoitment so until then I have to " take it

like a man "

My dad is not very happy about me going on pred nor are my

immunologist or primary however that is what the doctors that

diagnosed me thought would be the best. I am still holding out hope

that they don't do the pred but sometimes you have to deal and move

on. You have to pick your battles sometimes and I think this may end

up being one of those battle. I am going to call my dad in the morning

and see if he would look into getting me an appt with the doctor that

Kathy recommended ( I know I don't need him to do it considering I'm

18 but this is one thing dad is good for). If he can maybe I will be

able to do that on a Friday (considering I don't have classes) and

that doctor may save me from the Pred if I see him before thanksgiving.

~Colleen

Posted October 13, 2006 · October 13, 2006

colleen,

i saw that, but it sounding like it is pending to happen soon. i

wish you luck with your appointment. would driving to boston be out

of the question? there are some good clinics there, i can get some

names if you are interested.

jeff

>

> Hey Jeff,

> I am NOT on the med yet (sorry I didn't make that clear)I wont be

> until I have my doctors appoitment so until then I have to " take

it

> like a man "

> My dad is not very happy about me going on pred nor are my

> immunologist or primary however that is what the doctors that

> diagnosed me thought would be the best. I am still holding out

hope

> that they don't do the pred but sometimes you have to deal and

move

> on. You have to pick your battles sometimes and I think this may

end

> up being one of those battle. I am going to call my dad in the

morning

> and see if he would look into getting me an appt with the doctor

that

> Kathy recommended ( I know I don't need him to do it considering

I'm

> 18 but this is one thing dad is good for). If he can maybe I will

be

> able to do that on a Friday (considering I don't have classes) and

> that doctor may save me from the Pred if I see him before

thanksgiving.

> ~Colleen

>

Posted October 13, 2006 · October 13, 2006

Jeff,

Driving to Boston is not out of the question considering that's where

I went to get my PG diagnoses. Monday morning either my dad or I

(hopefully my dad) will be calling Dr. Mark Lebwohl at Mt. Sinai

because of Kathy's recommendation. I hope things work out with him

because I get car sick so if I can avoid the car ride to Boston it

would be nice however I don't care how far I have to travel as long

as the PG gets under control and achieve remission. I will not let

the PG beat me, I will beat it, it picked the wrong person to mess

with.

~Colleen

Posted October 25, 2006 · October 25, 2006

Hello Jeff, and crew,

I just got back from seeing the doctor at Mount Sinai that was

recommended and he has decided that I do NOT have PG. My scars don't

look like normal PG scars. He has a few ideas and wants me to be

presented at grand rounds (possibly next thursday if there is room to

fit me in). He give me Protopic (tacrolimus Ointment) to use on my

spots.

I have a quick question, now that the doctors no longer think I have

PG does that mean Im out of the group?

~Colleen

Posted October 25, 2006 · October 25, 2006

Hi Colleen,

For a member who has been rediagnosed as not having PG, you certainly

have added a lot to our Group. You can remain a member as long as you

like, and I hope you do stay as I'm sure we are all interested in your

PG presentation [or have you changed the topic?] and exactly what the

new diagnosis is.

Let us know how it goes at Grand Rounds if you can get in.

Love,

Posted October 25, 2006 · October 25, 2006

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

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

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