calling all sarkies !! i need help with a situation . please respond !

[Guest guest]

I'm so sorry first to hear your son has crohns disease and as far as the granules I would have them do a biopsy to rule out sarcoidosis being this disease is so hard to detect...my dermotologist actually discovered my sarc after going through 2 years of living you know what with my pulmonary doctors...and she also had to be the one to put me on sick leave...so I would have him check.

-- calling all sarkies !! i need help with a situation . please respond !

as you all know i have been diagnosed with neurosarcoidosis in august 08. well just this past may 09 my 13 year old son was diagnosed with crohns disease. the doc said the biopsy would check for anything else. so yesterday june 11,2009 i went for dj's follow up visit and that is when i heard the dreaded word "granuloma" . well my heart was in my throat ! not my kid now ! so the doctor tried to reassure me that it was just crohns disease. i am telling you all ,something in me tells me to have the cleveland clinic check him out ! what do you think i should do ?

this is what the fsr pamphelet says about granuloma's:

a biopsy that shows evidence of granulomas in any of your tissures is probably the best indication that you have sarcoidosis

not sure what to do , but the mother bear in me is coming out !!

------------------------------------

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[Guest guest]

as you all know i have been diagnosed with neurosarcoidosis in august 08. well

just this past may 09 my 13 year old son was diagnosed with crohns disease. the

doc said the biopsy would check for anything else. so yesterday june 11,2009 i

went for dj's follow up visit and that is when i heard the dreaded word

" granuloma " . well my heart was in my throat ! not my kid now ! so the doctor

tried to reassure me that it was just crohns disease. i am telling you all

,something in me tells me to have the cleveland clinic check him out ! what do

you think i should do ?

this is what the fsr pamphelet says about granuloma's:

a biopsy that shows evidence of granulomas in any of your tissures is probably

the best indication that you have sarcoidosis

not sure what to do , but the mother bear in me is coming out !!

[Guest guest]

Ok first of all I will definitely pray for you and yor son. Ok I do not know

much about Crohn's Disease, but I do know other diseases can cause a granuloma

they are all auto immun diseases. I know my neurosarcoidosis was not verified

until after they biospyed a lymph node. So settle down count your blessings and

wait for the diagonses. If you are really worried about your son having sarc

hsvr hime see Plum Doc with experience in sarc to be tested. I wish you and your

famliy blessings.

I am sure Rose and the rest will give better info then I. I just wanted to see

you calm down for it appears as if you are ready to snap.

Greg

>

> as you all know i have been diagnosed with neurosarcoidosis in august 08. well

just this past may 09 my 13 year old son was diagnosed with crohns disease. the

doc said the biopsy would check for anything else. so yesterday june 11,2009 i

went for dj's follow up visit and that is when i heard the dreaded word

" granuloma " . well my heart was in my throat ! not my kid now ! so the doctor

tried to reassure me that it was just crohns disease. i am telling you all

,something in me tells me to have the cleveland clinic check him out ! what do

you think i should do ?

>

> this is what the fsr pamphelet says about granuloma's:

> a biopsy that shows evidence of granulomas in any of your tissures is

probably the best indication that you have sarcoidosis

>

>

> not sure what to do , but the mother bear in me is coming out !!

>

[Guest guest]

My sister Joanne had Crohn's disease and it is a granulatomous disase like sarc, but there are many granuloma diseases, so don't panic. Are they both auto-immune??

Yes, they are. However, when someone in a family has an auto immune disorder, it increases the likelyhood that someone else in the family will also have one. In my family,

pretty much all of my sibs and I have at least one or more auto immune disorder. My prayers for your son. Crohns has alot more treatments available now than it used to.

Bonnie B

calling all sarkies !! i need help with a situation . please respond !

as you all know i have been diagnosed with neurosarcoidosis in august 08. well just this past may 09 my 13 year old son was diagnosed with crohns disease. the doc said the biopsy would check for anything else. so yesterday june 11,2009 i went for dj's follow up visit and that is when i heard the dreaded word "granuloma" . well my heart was in my throat ! not my kid now ! so the doctor tried to reassure me that it was just crohns disease. i am telling you all ,something in me tells me to have the cleveland clinic check him out ! what do you think i should do ?

this is what the fsr pamphelet says about granuloma's:

a biopsy that shows evidence of granulomas in any of your tissures is probably the best indication that you have sarcoidosis

not sure what to do , but the mother bear in me is coming out !!

Shop Dell's full line of Laptops now starting at $349!

[Guest guest]

I'd say...Go with your gut. it sure wouldn't hurt to have it checked out. I can't tell you the number of times docs have screwed up my diagnoses or read tests wrong. Take a deep breath and do what you think is right. hugs S. 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV)."No one whose hope is in You will ever be put to shame….Show me Your ways, O LORD, teach me Your paths; guide me in Your truth and teach me, for You are God my Savior, and My hope is in You all day long." Psalm 25:3,4,5 NIVSubject: calling all sarkies !! i need help with a situation . please respond

!To: Neurosarcoidosis Date: Friday, June 12, 2009, 1:27 PMas you all know i have been diagnosed with neurosarcoidosis in august 08. well just this past may 09 my 13 year old son was diagnosed with crohns disease. the doc said the biopsy would check for anything else. so yesterday june 11,2009 i went for dj's follow up visit and that is when i heard the dreaded word "granuloma" . well my heart was in my throat ! not my kid now ! so the doctor tried to reassure me that it was just crohns disease. i am telling you all ,something in me tells me to have the cleveland clinic check him out ! what do you think i should do ?this is what the fsr pamphelet says about granuloma's: a biopsy that shows evidence of granulomas in any of your tissures is probably the best indication that you have sarcoidosisnot sure what to do , but the mother bear in me is coming out

!!------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community CHATROOM LINK: http://www.sarcbuddies.com -- Open all the time..... Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

thank you greg. prayer is my strength right now ! i will def tell my doctors at

cleveland clinic ! i appreciate your help and support.i felt like this doctor

just brushed me off ! she is a pediatric gastro doctor and he is 13 that is the

only doc in this area that treats crohns for his age. ugh ! they already

mentioned remicade infusions for the poor thing. he is on 40 mg of pred. he is

weaning off now. if he does ok of the roids then there is no treatment. if he

has a flare then its remicade city for him. needless to say WE ARE HAVING OUR

WATER TESTED CUZ WE LIVE VERY CLOSE TO AN OLD DUMPS THAT A STUPID GAS CO. HIT

THE CAP AND IS NOW LEAKING. I HAVE HAD OUR TOWNS ATTORNEY CALL ME TO LET ME KNOW

THERE WILL BE SOMEONE COMING AROUND TO TEST WATER AND EVALUATE EVERYONES HEALTH

IN THE AREA

> >

> > as you all know i have been diagnosed with neurosarcoidosis in august 08.

well just this past may 09 my 13 year old son was diagnosed with crohns disease.

the doc said the biopsy would check for anything else. so yesterday june 11,2009

i went for dj's follow up visit and that is when i heard the dreaded word

" granuloma " . well my heart was in my throat ! not my kid now ! so the doctor

tried to reassure me that it was just crohns disease. i am telling you all

,something in me tells me to have the cleveland clinic check him out ! what do

you think i should do ?

> >

> > this is what the fsr pamphelet says about granuloma's:

> > a biopsy that shows evidence of granulomas in any of your tissures is

probably the best indication that you have sarcoidosis

> >

> >

> > not sure what to do , but the mother bear in me is coming out !!

> >

>

[Guest guest]

thank you mary,

my gut says to seek a second opinion at cleveland clinic ! the doc here in western ny do not know about this disease. that is why i personally go to cleveland clinic. have a blessed day ! ~~~barb

To: Neurosarcoidosis Sent: Friday, June 12, 2009 2:12:03 PMSubject: Re: calling all sarkies !! i need help with a situation . please respond !

I'd say...Go with your gut. it sure wouldn't hurt to have it checked out. I can't tell you the number of times docs have screwed up my diagnoses or read tests wrong. Take a deep breath and do what you think is right. hugs S. 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24

NIV)."No one whose hope is in You will ever be put to shame….Show me Yourways, O LORD, teach me Your paths; guide me in Your truth and teachme, for You are God my Savior, and My hope is in You all day long."Psalm 25:3,4,5 NIV

From: beautybarnweber <beautybarnweber@ yahoo.com>Subject: calling all sarkies !! i need help with a situation . please respond !To: Neurosarcoidosis@ yahoogroups. comDate: Friday, June 12, 2009, 1:27 PM

as you all know i have been diagnosed with neurosarcoidosis in august 08. well just this past may 09 my 13 year old son was diagnosed with crohns disease. the doc said the biopsy would check for anything else. so yesterday june 11,2009 i went for dj's follow up visit and that is when i heard the dreaded word "granuloma" . well my heart was in my throat ! not my kid now ! so the doctor tried to reassure me that it was just crohns disease. i am telling you all ,something in me tells me to have the cleveland clinic check him out ! what do you think i should do ?this is what the fsr pamphelet says about granuloma's:a biopsy that shows evidence of granulomas in any of your tissures is probably the best indication that you have sarcoidosisnot sure what to do , but the mother bear in me is coming out !!------------ --------- --------- ------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis

CommunityCHATROOM LINK: http://www.sarcbuddies.com -- Open all the time..... Message Archives:-http://groups. yahoo.com/ group/Neurosarco idosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups. yahoo.com/ group/Neurosarco idosis/database

[Guest guest]

Barb, there are different types of granulomas. Sarc is described as non-caseating granulomas. You might want to try to talk to the pathologist who interpreted the biopsy for more specifics.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

> To: Neurosarcoidosis > Date: Fri, 12 Jun 2009 13:27:31 +0000> Subject: calling all sarkies !! i need help with a situation . please respond !> > as you all know i have been diagnosed with neurosarcoidosis in august 08. well just this past may 09 my 13 year old son was diagnosed with crohns disease. the doc said the biopsy would check for anything else. so yesterday june 11,2009 i went for dj's follow up visit and that is when i heard the dreaded word "granuloma" . well my heart was in my throat ! not my kid now ! so the doctor tried to reassure me that it was just crohns disease. i am telling you all ,something in me tells me to have the cleveland clinic check him out ! what do you think i should do ?> > this is what the fsr pamphelet says about granuloma's:> a biopsy that shows evidence of granulomas in any of your tissures is probably the best indication that you have sarcoidosis> > > not sure what to do , but the mother bear in me is coming out !!> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > CHATROOM LINK: http://www.sarcbuddies.com -- Open all the time.....> > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Barb, I looked for more info on granulomas. On this one site alone, there were dozens of different types of granulomas. Crohn's apparently has its own type of granuloma. By all means, if you feel the need, get him evaluated, or at least his records reviewed, at Mayo, but meanwhile, please try to let go of some of this anxiety. Do some of Tracie's slow deep breathing, inhaling life-giving oxygen & exhaling toxic stress. Picture it in your mind, puffs of stress floating away. It really works!

Here is the link to that one website (there is some pretty grody-sounding stuff on there):

http://medical-dictionary.thefreedictionary.com/granulomas

Ramblin' RoseModerator

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: beautybarnweber@...Date: Fri, 12 Jun 2009 12:18:06 -0700Subject: Re: calling all sarkies !! i need help with a situation . please respond !

thank you mary,

my gut says to seek a second opinion at cleveland clinic ! the doc here in western ny do not know about this disease. that is why i personally go to cleveland clinic. have a blessed day ! ~~~barb

To: Neurosarcoidosis Sent: Friday, June 12, 2009 2:12:03 PMSubject: Re: calling all sarkies !! i need help with a situation . please respond !

I'd say...Go with your gut. it sure wouldn't hurt to have it checked out. I can't tell you the number of times docs have screwed up my diagnoses or read tests wrong. Take a deep breath and do what you think is right. hugs S. 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV)."No one whose hope is in You will ever be put to shame….Show me Yourways, O LORD, teach me Your paths; guide me in Your truth and teachme, for You are God my Savior, and My hope is in You all day long."Psalm 25:3,4,5 NIV

From: beautybarnweber <beautybarnweber@ yahoo.com>Subject: calling all sarkies !! i need help with a situation . please respond !To: Neurosarcoidosis@ yahoogroups. comDate: Friday, June 12, 2009, 1:27 PM

as you all know i have been diagnosed with neurosarcoidosis in august 08. well just this past may 09 my 13 year old son was diagnosed with crohns disease. the doc said the biopsy would check for anything else. so yesterday june 11,2009 i went for dj's follow up visit and that is when i heard the dreaded word "granuloma" . well my heart was in my throat ! not my kid now ! so the doctor tried to reassure me that it was just crohns disease. i am telling you all ,something in me tells me to have the cleveland clinic check him out ! what do you think i should do ?this is what the fsr pamphelet says about granuloma's:a biopsy that shows evidence of granulomas in any of your tissures is probably the best indication that you have sarcoidosisnot sure what to do , but the mother bear in me is coming out !!------------ --------- --------- ------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityCHATROOM LINK: http://www.sarcbuddies.com -- Open all the time..... Message Archives:-http://groups. yahoo.com/ group/Neurosarco idosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups. yahoo.com/ group/Neurosarco idosis/database

[Guest guest]

Second opinions never hurt, it could still be Crohns disease, but I would certainly get another opinion if it were my child. Marla

as you all know i have been diagnosed with neurosarcoidosis in august 08. well just this past may 09 my 13 year old son was diagnosed with crohns disease. the doc said the biopsy would check for anything else. so yesterday june 11,2009 i went for dj's follow up visit and that is when i heard the dreaded word " granuloma " . well my heart was in my throat ! not my kid now ! so the doctor tried to reassure me that it was just crohns disease. i am telling you all ,something in me tells me to have the cleveland clinic check him out ! what do you think i should do ?

this is what the fsr pamphelet says about granuloma's:

a biopsy that shows evidence of granulomas in any of your tissures is probably the best indication that you have sarcoidosis

not sure what to do , but the mother bear in me is coming out !!

[Guest guest]

I would go for the 2nd opinon too. It doesn't hurt and will help ease your mind.

Debbie I wo

as you all know i have been diagnosed with neurosarcoidosis in august 08. well just this past may 09 my 13 year old son was diagnosed with crohns disease. the doc said the biopsy would check for anything else. so yesterday june 11,2009 i went for dj's follow up visit and that is when i heard the dreaded word "granuloma" . well my heart was in my throat ! not my kid now ! so the doctor tried to reassure me that it was just crohns disease. i am telling you all ,something in me tells me to have the cleveland clinic check him out ! what do you think i should do ?this is what the fsr pamphelet says about granuloma's:a biopsy that shows evidence of granulomas in any of your tissures is probably the best indication that you have sarcoidosisnot sure what to do , but the mother bear in me is coming out !!