Re: Thanks for the welcome

[Guest guest]

Hang in there.

HELEN

Subject: Thanks for the welcomeTo: Neurosarcoidosis Date: Monday, July 13, 2009, 8:55 AM

Sorry to be replying to my own message, I have not been in an emailgroup or used this forum layout before, it will take a while to find myway around.Thanks to all for the welcome, and for the biographies and advice. Iguess you all know the difference it makes not feeling like the onlyperson in the world with this!No, I'm not on any treatments or medications or anything. The diseasewas diagnosed back in May; the thoracic guy reckons that a quarterlyreview is adequate, and is unwilling to treat the sarcoidosis, he saysthat the treatment can be as bad as the disease, so we don't treat ituntil the treatment is the lesser of the two evils, hence the quarterlyreview to monitor the situation.Anyhow, thanks again everyone, am off to do even more research.> Hi all, I signed up a while ago, and thought I should introduce myself> properly.>> I'm 30 years old, I live

in Australia, am a full time student, have a> husband, 2 kids (2 years old and 6 months old repectively) , 3 cats, 2> chickens, and a rabbit.>> I spent most of April in hospital with chest pain and breathing> problems, spent my 30th birthday having a lung biopsy, and was told> shortly after they are "95% sure" I have sarcoidosis (which,admittedly,> is a little bit better than the original guesses of tumour orlymphoma).> I am due for the next round of testing in roughly a fortnight, to find> out how far it has spread/what organs it's affecting, how fast it's> moving, etc. etc.>> I don't really have a huge understanding of the disease, mainly Ithink> because so little is known about it. I haven't really told manypeople,> I did tell my husband and family, all of whom said "well you look> alright to me" and filed it into the "never to be

mentioned again"> category.>> I'm going a little bit crazy: my head pounds all the time, all mybones> and joints ache, I itch so badly I am tearing my skin off in my sleep,> every breath I take feels like it has no oxygen in it, I spend a lotof> time doing a gasping goldfish imitation, my heart does all these weird> rhythm and beat strength changes at no notice, and I am exhausted all> the time, if I had any choice in the matter I would happily sleep for20> hours or so in every 24. But apparently that's all ok, because I look> alright.>> My sarcoidosis is being overseen by a thoracic specialist; accordingto> the local nurse, this is because it is a multi-organ disease, so> whichever organ it is found in gets given authority and everythingelse> gets outsourced. For some reason, that makes me laugh.>> Anyhow, that's me

in a nutshell. Nice to know I'm not alone.>> Thanks for accepting my membership. :-)>

[Guest guest]

I'm concerned about this doc's attitude. Certainly there are potentially serious side effects with any of the drugs used to treat sarc, but it sounds like you might have systemic sarc, which is very serious. Have you been worked up for all these symptoms, to determine if they are sarc-related? The heart symptoms are especially worrisome, as cardiac sarc can cause fatal arrhythmias. Is there a teaching hospital/medical center near you? I'd urge you to get another opinion. The guy is right about one thing, patients given Prednisone alone usually get better, then the Pred is stopped & the sarc returns worse than ever. But there are much better treatment regimens than Prednisone alone. You may need the Pred to get severe symptoms under control, then add other meds as the Pred is decreased. All of your symptoms may not be sarc-related, but they could be. Somebody who is very knowledgeable about current research & treatment options needs to evaluate you, and soon. I found one physician in Australia who specializes in sarc; I'm sure there are more. If this doc isn't near you, perhaps he could refer you to someone. I know several of the U.S. specialists will respond to email messages. Obviously they can't diagnose & treat anyone by email, but they will give suggestions for finding qualified providers. Dr. Om Sharma is very helpful in this way; osharma@...Here is the info for the Australian doctor:

, Dr. Roger K. A. Thoracic Consultant Physician Wesley Medical CentreLevel 4, Suite 4640 Chasely StreetAuchenflower Qld 4066Brisbane, AustraliaPhone: (07) 3719 5577 Fax: (07) 3719 5177respiratorylab@...

Unfortunately, we usually have to be our own advocate, not just about sarcoidosis, but most other medical issues. Do you have a friend or family member who will help you with this? We've had people join this group in order to assist a loved one. Sometimes it's just too hard to do it yourself, especially with the fatigue. I hope that you can get another opinion soon. Meanwhile, we are here for you. 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 > Date: Mon, 13 Jul 2009 13:55:36 +0000> Subject: Thanks for the welcome> > > Sorry to be replying to my own message, I have not been in an email> group or used this forum layout before, it will take a while to find my> way around.> > Thanks to all for the welcome, and for the biographies and advice. I> guess you all know the difference it makes not feeling like the only> person in the world with this!> > No, I'm not on any treatments or medications or anything. The disease> was diagnosed back in May; the thoracic guy reckons that a quarterly> review is adequate, and is unwilling to treat the sarcoidosis, he says> that the treatment can be as bad as the disease, so we don't treat it> until the treatment is the lesser of the two evils, hence the quarterly> review to monitor the situation.> > Anyhow, thanks again everyone, am off to do even more research.> > > > Hi all, I signed up a while ago, and thought I should introduce myself> > properly.> >> > I'm 30 years old, I live in Australia, am a full time student, have a> > husband, 2 kids (2 years old and 6 months old repectively), 3 cats, 2> > chickens, and a rabbit.> >> > I spent most of April in hospital with chest pain and breathing> > problems, spent my 30th birthday having a lung biopsy, and was told> > shortly after they are "95% sure" I have sarcoidosis (which,> admittedly,> > is a little bit better than the original guesses of tumour or> lymphoma).> > I am due for the next round of testing in roughly a fortnight, to find> > out how far it has spread/what organs it's affecting, how fast it's> > moving, etc. etc.> >> > I don't really have a huge understanding of the disease, mainly I> think> > because so little is known about it. I haven't really told many> people,> > I did tell my husband and family, all of whom said "well you look> > alright to me" and filed it into the "never to be mentioned again"> > category.> >> > I'm going a little bit crazy: my head pounds all the time, all my> bones> > and joints ache, I itch so badly I am tearing my skin off in my sleep,> > every breath I take feels like it has no oxygen in it, I spend a lot> of> > time doing a gasping goldfish imitation, my heart does all these weird> > rhythm and beat strength changes at no notice, and I am exhausted all> > the time, if I had any choice in the matter I would happily sleep for> 20> > hours or so in every 24. But apparently that's all ok, because I look> > alright.> >> > My sarcoidosis is being overseen by a thoracic specialist; according> to> > the local nurse, this is because it is a multi-organ disease, so> > whichever organ it is found in gets given authority and everything> else> > gets outsourced. For some reason, that makes me laugh.> >> > Anyhow, that's me in a nutshell. Nice to know I'm not alone.> >> > Thanks for accepting my membership. :-)> >> > > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> 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]

Hi Rose,

I'm sorry, this must be really boring for you guys, I'm guessing you go

over the same stuff with every new member, so I really appreciate you

taking the time to chat to me, especially (as I know all too well!) when

it can be really bloody hard to do anything at all, even get out of bed,

on any given day.

So, what's happened so far... When I was pregnant with my first child

back in 2006, I started to itch, mainly my legs and torso. Liver

function tests were fine, so it's never been looked at any further.

There are none of those big-lumps-that-I-can't-spell, so that may not be

sarc related.

Then in early 2008, I got tired, and I mean tired. I would sleep for 16

hours, get up for 2, nap for another 3, wake up for an hour, and go

crash out for another 12+... over and over again. Then I would be fine

for a while, have a week or so with masses of energy, then go back to

exhaustion. You know the type when your vision goes wierd and it's like

being drunk and walking in water? Mid 2008, we found out I was pregnant

again, so between pregnancy, working full time, studying fulltime,

caring for my mum, being a mum to a 1 year old... that explained the

tired! The thoracic guy says that tiredness and fatigue can have many

causes.

Also in early 2008, I got a headache. My GP said it was a cluster

headache, not to worry, and take paracetamol. The headache hasn't gone

away since, and I seem to live on Codeine most days. Again, the thoracic

guy says that a headache can have many causes.

It wasn't until I had these couple of what I thought were heart attacks

that I got any type of medical examination at all. I had some blood

test, don't know what type, but they were all normal. A chest X-Ray then

CT showed " mediastinal lymphadenopathy " , then the lung and heart biopsy

found granulomas.

My optometrist says she can see " bulges " in my eye wall, my

opthamologist says he can't, so no idea there.

Sorry, I'm raving a bit.

Thank you for Dr , I have trawled his site, he is on the other side

of the country, worse luck. That said, I have to take the kids up to

Brisbane later this year, might see if I can get an appointment with him

while I'm there. The bloke I'm seeing is attached to our teaching

hospital, I get the sense he has been there a long time, and is

regretting the path his career has taken. He seems very sad.

Do you find that your medical professionals are happy to share records

and patients and information?

Thank you for the reply.

Allanah

>

>

> I'm concerned about this doc's attitude. Certainly there are

potentially serious side effects with any of the drugs used to treat

sarc, but it sounds like you might have systemic sarc, which is very

serious. Have you been worked up for all these symptoms, to determine if

they are sarc-related? The heart symptoms are especially worrisome, as

cardiac sarc can cause fatal arrhythmias. Is there a teaching

hospital/medical center near you? I'd urge you to get another opinion.

The guy is right about one thing, patients given Prednisone alone

usually get better, then the Pred is stopped & the sarc returns worse

than ever. But there are much better treatment regimens than Prednisone

alone. You may need the Pred to get severe symptoms under control, then

add other meds as the Pred is decreased.

>

> All of your symptoms may not be sarc-related, but they could be.

Somebody who is very knowledgeable about current research & treatment

options needs to evaluate you, and soon. I found one physician in

Australia who specializes in sarc; I'm sure there are more. If this doc

isn't near you, perhaps he could refer you to someone. I know several of

the U.S. specialists will respond to email messages. Obviously they

can't diagnose & treat anyone by email, but they will give suggestions

for finding qualified providers. Dr. Om Sharma is very helpful in this

way; osharma@...

>

> Here is the info for the Australian doctor:

>

>

>

> , Dr. Roger K. A.

> Thoracic Consultant Physician Wesley Medical Centre

> Level 4, Suite 46

> 40 Chasely Street

> Auchenflower Qld 4066

> Brisbane, Australia

> Phone: (07) 3719 5577 Fax: (07) 3719 5177

> respiratorylab@...

>

>

> Unfortunately, we usually have to be our own advocate, not just about

sarcoidosis, but most other medical issues. Do you have a friend or

family member who will help you with this? We've had people join this

group in order to assist a loved one. Sometimes it's just too hard to do

it yourself, especially with the fatigue. I hope that you can get

another opinion soon. Meanwhile, we are here for you.

>

>

> Ramblin' Rose

> Moderator

>

>

>

>

> " 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: third_usher@...

> > Date: Mon, 13 Jul 2009 13:55:36 +0000

> > Subject: Thanks for the welcome

> >

> >

> > Sorry to be replying to my own message, I have not been in an email

> > group or used this forum layout before, it will take a while to find

my

> > way around.

> >

> > Thanks to all for the welcome, and for the biographies and advice. I

> > guess you all know the difference it makes not feeling like the only

> > person in the world with this!

> >

> > No, I'm not on any treatments or medications or anything. The

disease

> > was diagnosed back in May; the thoracic guy reckons that a quarterly

> > review is adequate, and is unwilling to treat the sarcoidosis, he

says

> > that the treatment can be as bad as the disease, so we don't treat

it

> > until the treatment is the lesser of the two evils, hence the

quarterly

> > review to monitor the situation.

> >

> > Anyhow, thanks again everyone, am off to do even more research.

> >

> >

> > > Hi all, I signed up a while ago, and thought I should introduce

myself

> > > properly.

> > >

> > > I'm 30 years old, I live in Australia, am a full time student,

have a

> > > husband, 2 kids (2 years old and 6 months old repectively), 3

cats, 2

> > > chickens, and a rabbit.

> > >

> > > I spent most of April in hospital with chest pain and breathing

> > > problems, spent my 30th birthday having a lung biopsy, and was

told

> > > shortly after they are " 95% sure " I have sarcoidosis (which,

> > admittedly,

> > > is a little bit better than the original guesses of tumour or

> > lymphoma).

> > > I am due for the next round of testing in roughly a fortnight, to

find

> > > out how far it has spread/what organs it's affecting, how fast

it's

> > > moving, etc. etc.

> > >

> > > I don't really have a huge understanding of the disease, mainly I

> > think

> > > because so little is known about it. I haven't really told many

> > people,

> > > I did tell my husband and family, all of whom said " well you look

> > > alright to me " and filed it into the " never to be mentioned again "

> > > category.

> > >

> > > I'm going a little bit crazy: my head pounds all the time, all my

> > bones

> > > and joints ache, I itch so badly I am tearing my skin off in my

sleep,

> > > every breath I take feels like it has no oxygen in it, I spend a

lot

> > of

> > > time doing a gasping goldfish imitation, my heart does all these

weird

> > > rhythm and beat strength changes at no notice, and I am exhausted

all

> > > the time, if I had any choice in the matter I would happily sleep

for

> > 20

> > > hours or so in every 24. But apparently that's all ok, because I

look

> > > alright.

> > >

> > > My sarcoidosis is being overseen by a thoracic specialist;

according

> > to

> > > the local nurse, this is because it is a multi-organ disease, so

> > > whichever organ it is found in gets given authority and everything

> > else

> > > gets outsourced. For some reason, that makes me laugh.

> > >

> > > Anyhow, that's me in a nutshell. Nice to know I'm not alone.

> > >

> > > Thanks for accepting my membership. :-)

> > >

> >

> >

> >

> >

> >

> > ------------------------------------

> >

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > 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

> >

> >