Re: JUST WONDERING????

[Guest guest]

hi shane,

i know rebecca supplied you with a few answers, and that was great.

i don't have much experience with sweete syndrome going into other

things and then into pg..etc., never heard of that. let me say this

tho. pg is very difficult for 99% of all docs to dx. when they

finally got around to a running biopsy (they did 3 of them???? wow!),

sounds like they figured it out. my guesstamet at this point is, the

other dx's were a guess (docs have a way of doing $hit like that).

this is based on what i have read so far. this does not surprise me,

from my limited experience. guess it is something to consider. in

my humble opinion, pg is not something that starts as something else

(derm wise), but there are some known connections other ways. more

on that later....

in a lot of ways you remind me of myself. my first daughter was

about 2 yo when my first wife and i broke up. i had custody. it was

difficult because i had a year long bout with mono. was hospitalized

for it. someone 35 yo getting mono, yeah right. but that was me.

took me a year to get back on my feet. she is now my middle daughter

because my new wife (well, been married 21 y now) had a daughter i

adopted, she is my oldest now (and preg with my first grand kid,

btw!), she is 9 months older than my middle one.....are you

following? hee, hee. i have a youngest by my current marriage so i

have his/hers and ours. cool, eh?

but anyway, i don't think it is a matter of " they stopped looking " .

i think it is a matter of getting into a setting where you have a

team looking at the overall picture. that is what i HAD to do in

order to get properly dx'ed and treated. the bowel issue bothers

me. about 20% of the cases of pg are related to cd, uc, ms, ra and a

few others. i discovered my pg at the same time we discovered the

cd. why? i was going to the university of michigan med cntr and i

was seeing derm and gi at the same time. not having insurance is

tough. don't know what to tell you there. our country sucks when it

comes to supporting our uninsured....well, that is another story

(makes me angry, grrrrrrrr).

don't say you never have amounted to much. give yourself some

credit. you will pull thru, just hang.

yes, the tests are expensive, even with insurance, the co-pays were

even unbelieveable. somehow you need to get to root cause, the

underlying issue. like i said, the bowel problem bothers me, because

that was EXACTLY what i had. that is what lead me to investigating

pg. when they looked at my small bowel follow thru and told me

crohns, i was actually relieved, because i had figured all along that

was what it was (hey, it wasn't something worse!!!!).

so where does that leave us now? what do you think?

your friend,

jeff

>

> Howdy all!!!

>

> A couple of questions here maybe you can help me with??

>

> I am a " cured " pyoderma gangrenosum member(over 2 years since any

> symptoms).

> Early in my p.g. the lab results said i had SWEETE SYNDROME and a

few

> weeks later another biopsy came back as LEUKOCYTOCLASTIC

VASCULITIS,

> and after about a month of that the growing ulcerations were now

P.G.

>

> Is that how it works? Does p.g. start as something else and

eventually

> becomes p.g.?

>

> My doctors told me early on that theyhad stopped searching for

> the " cause " and were only concerned with healing the ulcerations.

> I did not have insurance, and it seemed to me that when the initial

> tests(the inexpensive tests) came back with no answers(no HIV, no

> HEPITITIS) they quit looking.

> Now...all three of the conditions they said I had are known to be

> caused by underlying systemic disease, so isn't it likely that ther

is

> still something wrong?

> I have noticed things like short term memory loss , lack of

> concentration(big-time), bowel irritation, that seems to be rapidly

> increasing for someone my age (36yrs.)

> Anyway, i figured this group would have a lot more answers than the

> doctors that always told me well...nothing!!!

>

> I know that some of these tests can get expensive, but I am a

single

> dad of a wonderful 2yr old little girl who deserves to have me

around

> a while. It seems kind of irrisponsible of the doctors to have

given

> up up looking for a cause so easily!

> Anyway, i have never really amounted to much, but my little girl is

> definately special (from her B-day, Feb.29 2004, to her wonderful

> happy attitude towards everything). I am all she has, and I need

to

> try and make sure that this can continue...dont u think?

>

> Anyway I will post some more pics of us.

>

> Any feedback on these questions would be greatly appreciated!

> Sincerely

> SHANE AND AERIEL MABERRY

>