Re: Hi, I'm new.

[Guest guest]

" third_usher "

Hi there I am so sorry that you have had to find us. But welcome and make

yourself at home here. The members and moderators here are really good people.

The moderators will keep you informed with update information on Sarcoidosis.

Everybody here will share their experiences and thoughts with you. And ever now

and again one of us may vent our Thoughts here. So feel free to do the same but

remember clean thoughts go further then dirty ones. I have Neurosarcoidosis with

involvement in the Brain and nervous systems. My friend say that explains alot

about me. But enough of that. From a true Texan I say welcome and may your days

be pain-free and full of joyous love.

Greg aka Krumdawg

>

>

> 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. :-)

>

[Guest guest]

Hi " New " ,

Welcome to our family. We are sorry you had to find us under

these circumstances, but we are also glad you did! We have nearly 600

members here from all over the world and we have many who are very

knowledgeable in the medical field and others who have dealt with this

disease for many years and are also knowledgeable in this disease. Most are

very willing to help.........answer questions........describe symptoms, etc.

Since we are all sick here, we know what you are going through.

My sarc started in my lungs and was diagnosed by lung biopsy after

nearly three years of seeing doctor after doctor! They all thought it was

something else and spent useless time looking for it! However, I finally

found a Doctor that had treated sarcoidosis before and had several patients

and he diagnosed me correctly. The symptoms you describe could be me

describing myself! :-) I am sorry you have this at such a young age and

with two little ones to take care of. Have they put you on any meds at

all????????

Please browse our archives and especially the FILES section .

There is a lot of info there and will help. Also feel free to ask any and

all questions. The only request I have is to give us a day or two to

answer as I have said, we are ALL sick here and sometimes it takes a while.

Usually, there is at least one of us around to answer, though. We have two

owners........Darlene (myself) and Tracie. We also have several

moderators -- Rose, Debbie, .............so usually one of us is

around.

Again, welcome.........and know that we are here for you.

Hugs,

Darlene

NS Co-Owner/Moderator

[Guest guest]

Welcome to our family. I'm very sorry that you have met up with the sarc monster, but this group will be a blessing & haven for you, as well as a wonderful sourced of information. First off, I have two resource links for you. The first will help you address the issue of "looking good." Go to http://www.butyoulookgood.org/ You can read the first chapter online (at least you could the last time I tried), and order the booklet. It used to be about $5.00 US. I bought several & loaned them around to friends & family, even doctors. The second link is www.stopsarcoidosis.org. This is for FSR, The Foundation to Stop Sarcoidosis. They also have wonderful booklets that you can download or order. I believe the first booklet of each category is free. Another site for reliable info is the website for Dr. Sharma in S. California, www.sarcoidosissharma.com/. This whole situation can be very overwhelming, especially at first. Never hesitate to ask any questions, no mather how insignificent if may seem. Also feel free to gripe, vent, etc. We are here to provide the support & understanding that most family & friends are unable to, not because they don't care, but because it's often an "invisible" disease. You don't have a tumor hanging out, or other obvious signs, so it just doesn't seem real or serious.

Two weeks is a long time to wait for further assessment, but if you can't be seen sooner, at least begin making a list to take to the doctor visit. Write down questions & concerns. Also begin keeping a symptom diary; record every new symptom or change in symptoms. If possible, keep this info on your computer where it's easy to update & print out for each visit. An example for your symptom diary: in Sept. of 2001 I started feeling like I had little pieces of tape stuck to the bottoms of my feet; just small spots that didn't last long. Over time the sensation covered more of my feet & lasted longer. After about a year & a half, the front half of both feet were continually numb but also felt like they were burning (like when you have your feet too close to a fire). Within another year, there was still the numbness, but also feeling like little knives sticking my feet. And these symptoms of peripheral neuropathy (nerve damage) have continued to worsen & evolve. But in looking back I can see when it actually started, or when I became aware of it.

Another suggestion is to take someone with you to the doctor's visit as an advocate for you. They don't have to have a medical background, but to be willing to stand up for you. For example, don't allow the doctor to leave the room until ALL your questions are answered or at least addressed. So, someone assertive but not obnoxious. Print or write out your questions & concerns & give a copy to your companion, as well as the doctor. It's also a good idea to begin keeping a written record of your meds, including OTC meds. Take a copy to each doctor visit. I usually print out a copy, but if I forget, they just copy the one I carry in my purse. I update it with any med changes, also updating the date, but I save the old lists in a folder in My Documents. It's been very handy for referring back to previous treatments.

Pulmonologists (lung specialists) are often the primary sarc docs, because 90% of patients have lung involvement. However, like all docs in all types of practice, many of them are woefully ignorant of recent research & recommendations for assessing & treating sarc. That's where FSR & Dr. Sharma's site can help you. It's bizarre & ridiculous, but many of us have had to educate our own doctors. If your doctor is uninformed, but open to learning, great. If he/she has a closed mind, look for another doctor. It's vital that you have a medical team that you trust. Successful treatment of sarc usually involves lots of trial & error to find the medication combination that reduces your symptoms, while not producing unacceptable side effects. So patience is important, balanced with vigilance & a willingness to question.

I hope this has not been TMI (too much info!) at once. You will undoubtedly hear from other list members. All of us are in varying degrees of illness, so you may not get responses to question immediately, but give us a couple of days & we'll answer to the best of our ability. Occasionally a message gets lost in cyberspace, so if after a few days you have gotten NO response, please re-send the message. Also, at the bottom of this & all group messages are several links. Archives holds all the previous messages. Darlene, one of the co-owners, has been slowly sifting through this section, cleaning it up & making it more user-friendly. This despite some really serious health issues the last couple of years. Just type in your query (such as "fatigue") and many messages will come up. There are other links, as well as a photos section, so you can put faces to the names.

I will also send you a message from Tracie, our other co-owner, which gives a good overview of sarc. Look for that in another message. Remember to take it one step at a time & know that you have an incredible safety net of hundreds of people all over the world!

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: Sun, 12 Jul 2009 12:12:16 +0000> Subject: Hi, I'm new.> > > 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]

Welcome, I'm sorry you had to find this group, but you have found a great group of knowledgeable people, whom are also fighting this disease.  We are all sick, at different levels, and sometimes it just depends on the day, as

to how many will be here. My primary too is a Lung specialist, as the Sarc started in my lungs. I had a biopsy of a cervical/neck lump, and I too was first told it was more then likely Lymphoma.  I have been dealing with Sarc for 15 years,

and sometime I think Lymphoma might of been the better diagnoses. I have advanced into skin, having lesions all over, thus also systemic, meaning everywhere, not sure of all the organs it is in. however we do

know it is neuro/brain and spinal cord.  So I have many symptoms, too many to list.  I am currently on Remicade and doing fairly well, and stable, the disease is not progressing, (as far as we know). and the think

is no one really knows. I have found great support with this group, we are all like family here, and we will try to answer all your questions, sometimes you may have to wait a day or two for an answer, like I said

we are sick too.  I have been a part of this group for at least 6 years, and we have been through many things together, and learned many things together too.  There are different treatments, and usually in the beginning,

they like to start with steroids, and that is a whole other chapter, but like I said, feel free to ask any time, and there is not such thing as stupid question.  So again Welcome.  Marla I live in No, Colorado, USA

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. :-)

[Guest guest]

Welcome to the group.

You have come to a good place. We have such great comrade and all of our

questions are answered one way or another. Our moderators and owners are

second next to none. they are very helpful. Even some of the members are

knowageable.

I have Neurosarcoidosis. I received it in 2005. Like all of us the

symptoms are not always alike and come and go when they darn well feel like

it. I have learned to go with the flow. I can no longer walk because of

the dizziness and muscle weakness. I am in a wheel chair. Let me say I can

walk but with great difficulty and not far. I will not let this beat me. I

am a very independent person. I drive, go shopping, spend time with family

and am big in volenteering. I can no longer work but this is ok I was ready

for retirement anyway. lol I am 57.

Again welcome to the group. Have patience with us your questions will be

answered. Also feel free to just chat when you feel like

My name is Jackie and I am in Wisconsin, USA.

Hi, I'm new.

>

> 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]

Jackie, About the muscle weakness, have you tried Physical Therapy, I didn't think it would work, but then I though heck why not.  And it's working,my legs are so much stronger now, walking is easier, my balance is

much better.  I still cannot walk very far, so am limited in that. I know what you mean about the dizziness, I have had some bouts of it, and have to just stop and sit down til it passes.  So I can do short walking, but when it comes to any distance, I use my wheelchair too.

but I am stronger, I am also working on my arms, so I can do most of the wheelchair myself, but need help at times.  I too continue to shop, and do things with my family too.  like I am going to a Urban concert this

Wed. and I am so excited!  My sister in law got a bunch of girls to gofor a girls night out, then my husband was helping his brother on his house and his brother called in for free tickets to , and he was the right

number caller and he won two tickets to Urban, wow what are the chances, so that will be nice, we won't be sitting together, but we can drive down together.   OK enough of me. Blessings,  Marla

Welcome to the group.

You have come to a good place. We have such great comrade and all of our

questions are answered one way or another. Our moderators and owners are

second next to none. they are very helpful. Even some of the members are

knowageable.

I have Neurosarcoidosis. I received it in 2005. Like all of us the

symptoms are not always alike and come and go when they darn well feel like

it. I have learned to go with the flow. I can no longer walk because of

the dizziness and muscle weakness. I am in a wheel chair. Let me say I can

walk but with great difficulty and not far. I will not let this beat me. I

am a very independent person. I drive, go shopping, spend time with family

and am big in volenteering. I can no longer work but this is ok I was ready

for retirement anyway. lol I am 57.

Again welcome to the group. Have patience with us your questions will be

answered. Also feel free to just chat when you feel like

My name is Jackie and I am in Wisconsin, USA.

Hi, I'm new.

>

> 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]

I was going to therapy until Medicare said enough. So it has helped to where I am able to take about a dozen steps without holding on. My knees are shot and the muscles around them aren't doing their job. I just came home with a stationary bike. recumbent. I was up to a mile and a half in 60 min when therapy booted me out. And he had adjusted the tension 3 times to 6. I am going to keep that up as well as walking around my apt. building. I live In a complex and it is quite a walk, sidewalk all the way. My sister is going to stop on her way to work and walk with me to make sure I keep it up. Marla I haven't given up just had to make a few adjustments in my life (again) and surroundings. I will not let it get me down and I will do all I can. In spite of the things that try to keep me down.

Thank you for your concern and wisdom. I value your opinion and advise.

Jackie

Hi, I'm new.>> 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]

Welcome,I hope you get the help and information you need.My name is Helen.I have sarcoidosis in my lungs,eyes,brain and I have sarcoidarthritis.This group has been very helpful to me.Be BLESSED.

HELEN

Welcome to the group.You have come to a good place. We have such great comrade and all of our questions are answered one way or another. Our moderators and owners are second next to none. they are very helpful. Even some of the members are knowageable.I have Neurosarcoidosis. I received it in 2005. Like all of us the symptoms are not always alike and come and go when they darn well feel like it. I have learned to go with the flow. I can no longer walk because of the dizziness and muscle weakness. I am in a wheel chair. Let me say I can walk but with great difficulty and not far. I will not let this beat me. I am a very independent person. I drive, go shopping, spend time with family and am big in volenteering. I can no longer work but this is ok I was ready for retirement anyway. lol I am 57.Again welcome to the group. Have patience with us your questions will be answered. Also feel free to

just chat when you feel likeMy name is Jackie and I am in Wisconsin, USA.

Hi, I'm new.>> 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.sarcbudd ies.com -- Open all the time.....>> Message Archives:-> http://groups. yahoo.com/ group/Neurosarco idosis/messages>> Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups. yahoo.com/ group/Neurosarco idosis/database>>

[Guest guest]

Hi. my name is Royce. Welcome. Whenever you want to talk, feel free.

Welcome to the group.You have come to a good place. We have such great comrade and all of our questions are answered one way or another. Our moderators and owners are second next to none. they are very helpful. Even some of the members are knowageable.I have Neurosarcoidosis.. I received it in 2005. Like all of us the symptoms are not always alike and come and go when they darn well feel like it. I have learned to go with the flow. I can no longer walk because of the dizziness and muscle weakness. I am in a wheel chair. Let me say I can walk but with great difficulty and not far. I will not let this beat me. I am a very independent person. I drive, go shopping, spend time with family and am big in volenteering. I can no longer work but this is ok I was ready for retirement anyway. lol I am 57.Again welcome to the group. Have patience with us your questions will be answered. Also feel free to

just chat when you feel likeMy name is Jackie and I am in Wisconsin, USA.

Hi, I'm new.>> 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.sarcbudd ies.com -- Open all the time.....>> Message Archives:-> http://groups. yahoo.com/ group/Neurosarco idosis/messages>> Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups. yahoo.com/ group/Neurosarco idosis/database>>

[Guest guest]

I am so sorry you had the need to find us because of sarc, but you have definitely come to the right place. Even though it is called a neurosarc site, there is every imaginable type of sarc here. I have systemic sarcoidosis, similar to you; lungs, heart, other places. They thought I have non-hodgins lymphoma till they figured it out.

You will find a wonderful and tremendous amount of information here. Most of all you will find people who will listen, empathise, understand, let you vent, and just generally be some of the best friends a person could have.

Most of us "look" ok, but sarcoidosis is kind of like a watermelon, you never truly know what the inside looks like by looking at the outside.

Take care, and take it slow for your body's sake.

Your in my prayers, Connie - Florida

Subject: Hi, I'm new.To: Neurosarcoidosis Date: Sunday, July 12, 2009, 8:12 AM

Hi all, I signed up a while ago, and thought I should introduce myselfproperly.I'm 30 years old, I live in Australia, am a full time student, have ahusband, 2 kids (2 years old and 6 months old repectively) , 3 cats, 2chickens, and a rabbit.I spent most of April in hospital with chest pain and breathingproblems, spent my 30th birthday having a lung biopsy, and was toldshortly 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 findout how far it has spread/what organs it's affecting, how fast it'smoving, etc. etc.I don't really have a huge understanding of the disease, mainly I thinkbecause 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 lookalright 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 bonesand 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 oftime doing a gasping goldfish imitation, my heart does all these weirdrhythm and beat strength changes at no notice, and I am exhausted allthe time, if I had any choice in the matter I would happily sleep for 20hours or so in every 24. But apparently that's all ok, because I lookalright.My sarcoidosis is being overseen by a thoracic specialist; according tothe local nurse, this is because it is a multi-organ disease, sowhichever organ it is found in gets given authority and everything elsegets 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]

Jackie,  I am so glad you are continuing to exercise,  I know what you mean though by only being able to walk so far, my knees are good, and I can still only walk so far, and the hardest part of that is that it is very slow, and gets slower until I just stop, I try to

walk whenever I can!  Today I went out looking for a formal dress to wear in Dallas at my Kay convention,  it's so fun, but I realized that I was getting slower and slower and wonder how I was going to get out of there, I rested,

then basically slid my way out, thinking how much easier it would of been to just use the wheelchair, I get asked why don't use just use the cane, but I findthat does not give me anymore steps, it just keeps me balanced as I get slower.

but I find that PT is helping me to be stronger, and that is important to keep our muscles toned even if we need help to do it, so good for you for keeping itup.  It's much harder to stay so committed when you are alone, I'm glad you

have a sister near by that will encourage you on.  Keep on keeping on, (that's a blast from the past)   Blessings, Marl a

I was going to therapy until Medicare said enough.   So it has helped to where I am able to take about a dozen steps without holding on.  My knees are shot and the muscles around them aren't doing their job.  I just came home with a stationary bike.  recumbent.  I was up to a mile and a half in 60 min when therapy booted me out.  And he had adjusted the tension 3 times to 6.   I am going to keep that up as well as walking around my apt. building.  I live In a complex and it is quite a walk, sidewalk all the way.  My sister is going to stop on her way to work and walk with me to make sure I keep it up.  Marla I haven't given up  just had to make a few adjustments in my life (again) and surroundings.  I will not let it get me down and I will do all I can.  In spite of the things that try to keep me down.

Thank you for your concern and wisdom.  I value your opinion and advise. 

Jackie

Hi, I'm new.>> 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]

thanks Marla

I am lucky to have a sister who bugs me to move all the time. I also have a daughter and granddaughter who are on me to walk more. Sometimes I want to scream leave me alone I can't do anymore than this. but I just listen and get up and walk It does me good.

Kay Convention sounds like it would be fun. I used to use Kay all the time. I even have glamour shots from a party I went to. It was fun.

You have a great time and you keep on keeping on.

Blessings

Jackie

Hi, I'm new.>> 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]

No I am not sorry to have finally found a group that might be helpful. I am the

caregiver for my wife jenny who was finally diagnosed with neurosarcoidosis

about 4 years ago. Previous to this diagnosis we dealt with seizure disorder.

At this point she is taking CellCept to hopefully control the granulomas in the

brain and still takes the seizure meds. Our issues are the loss that has

occurred as a result of the disease. She suffers greatly with speech issues,

tremors and mobilty issues.

We moved from our house in Northwest Jersey about 2 and a half years ago to make

it easier on her. We went to a townhouse and yet the issues seem to just get

worse.

I know many people suffer with this disease in the lungs and from lesions.

Since i am new to the group on behalf of my wife are there others who are

suffering with the disease in the brain as well? Some days I feel like the

doctors are no better than high priced plumbers trying to fix a leak in a pipe

that just won't stay fixed.

We have good doctors at the Lehigh Valley Hospital since we are now in Easton

PA, but I keep searching hoping that something might help. We like others have

lost so much.

Darryl (Matt)

>

> >

> >

> >

> > 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. :-)

> >

> >

> >

>

[Guest guest]

,

First of all I am so sorry to hear about your wife's involvement with Sarcoidosis. I also was diagnosed with Neurosarcoidosis, in May of 2008. They found that I have 4 granulomas (lesions) around the brain and 5 around the brain stem, tho the last MRI showed "Marked improvement over previous MRI's they noted that there is swelling in the vessels in the brain - possibly due to a stroke or the Neurosarcoidosis. So you and your wife are not alone. I have found that, thru some hard lessons that there is no cure for Sarcoidosis and the cause is not really known . I thought at one point I was cured and went back to a normal life to only have a Major Flare Up 2 /12 months later. It was so bad that I still don't remember it. I have to rely on what my friends and family tell me. Plainly I did not at that time know who or what I was or where I was. So I am here back on Prednisone looking to change to Humria to control this Neurosarcoidosis. I feel I am extremely lucky with the help of my ex-wife who is a Nurse I have built a team of Doctors that have over 80 years of Sarcoidosis diagnose and treatments combine. there may be no cure for this but what have noticed is that you can get it to go to remission a stay there. If you allow I will add you and your wife to my prayers. I also wish you and your wife many loving and pain-free days together. May you both be blessed.

Greg aka Krumdawg

From:

Sent: Friday, July 17, 2009 10:34 PM

To: Neurosarcoidosis

Subject: Re: Hi, I'm new.

No I am not sorry to have finally found a group that might be helpful. I am the caregiver for my wife jenny who was finally diagnosed with neurosarcoidosis about 4 years ago. Previous to this diagnosis we dealt with seizure disorder. At this point she is taking CellCept to hopefully control the granulomas in the brain and still takes the seizure meds. Our issues are the loss that has occurred as a result of the disease. She suffers greatly with speech issues, tremors and mobilty issues. We moved from our house in Northwest Jersey about 2 and a half years ago to make it easier on her. We went to a townhouse and yet the issues seem to just get worse. I know many people suffer with this disease in the lungs and from lesions. Since i am new to the group on behalf of my wife are there others who are suffering with the disease in the brain as well? Some days I feel like the doctors are no better than high priced plumbers trying to fix a leak in a pipe that just won't stay fixed. We have good doctors at the Lehigh Valley Hospital since we are now in Easton PA, but I keep searching hoping that something might help. We like others have lost so much. Darryl (Matt) > > >> >> >> > 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. :-)> >> > > >>

[Guest guest]

Matt

I was given this monster of a disease in March of 06. It came so fast I

have a hard time remembering some of the things I went through. I was in

the hospt for a full month before they found the NS. Then 6 months in a

nursing home to get where I was able to come home. I am now able to walk a

little with help of a walker, mostly in wheelchair. I can do all my own

cares and I even drive and go out by myself. I have good days and bad days

but I am alive and that is what counts. Your wife is lucky to have a

supporting husband. I have a wonderful partner. I am on prednisone and

methotresate with plaquinil. I don't see getting off the prednisone anytime

soon because it has helped so very much.

The doctors seem like plumbers because not much is known about this monster.

They are learning and with Gods help they will find a cure.

You are not alone and have come to a wonderful place. The moderators are

very knowledgeable and helpful.

Here we can ask questions, vent, laugh and cry with each other. So go ahead

and ask questions. Yell scream cry and laugh. We are all here for you.

Bless you and know you are in our thoughts and prayers.

Jackie from Wisconsin

Re: Hi, I'm new.

> No I am not sorry to have finally found a group that might be helpful. I

> am the caregiver for my wife jenny who was finally diagnosed with

> neurosarcoidosis about 4 years ago. Previous to this diagnosis we dealt

> with seizure disorder. At this point she is taking CellCept to hopefully

> control the granulomas in the brain and still takes the seizure meds. Our

> issues are the loss that has occurred as a result of the disease. She

> suffers greatly with speech issues, tremors and mobilty issues.

>

> We moved from our house in Northwest Jersey about 2 and a half years ago

> to make it easier on her. We went to a townhouse and yet the issues seem

> to just get worse.

>

> I know many people suffer with this disease in the lungs and from lesions.

> Since i am new to the group on behalf of my wife are there others who are

> suffering with the disease in the brain as well? Some days I feel like

> the doctors are no better than high priced plumbers trying to fix a leak

> in a pipe that just won't stay fixed.

>

> We have good doctors at the Lehigh Valley Hospital since we are now in

> Easton PA, but I keep searching hoping that something might help. We like

> others have lost so much.

>

> Darryl (Matt)

>

>

>

>

>>

>> >

>> >

>> >

>> > 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]

Thanks we will take all of the help we can get

Be well.

matt

> >

> > >

> > >

> > >

> > > 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. :-)

> > >

> > >

> > >

> >

>

[Guest guest]

Yes we use prednisone. It won't be going away anytime soon. We were on

Methotrexate, but we have reached a point where now we need the Cellcept. She

does face mobility issues and they have suggested a cane. We are trying that

now....However for someone who was so active she is fighting the assitive

technolgies. I am afraid that we will reach the walker stage or the wheelchair.

She no longer can work or drive.

She does as they say have good days and bad. I am glad to have found this

group. It will give me additional support. Thanks to you all.

> >>

> >> >

> >> >

> >> >

> >> > 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 ,

Welcome to our group may you find the information,love and friendships you need.

be encouraged.

HELEN

Subject: Re: Hi, I'm new.To: Neurosarcoidosis Date: Saturday, July 18, 2009, 8:49 PM

Yes we use prednisone. It won't be going away anytime soon. We were on Methotrexate, but we have reached a point where now we need the Cellcept. She does face mobility issues and they have suggested a cane. We are trying that now....However for someone who was so active she is fighting the assitive technolgies. I am afraid that we will reach the walker stage or the wheelchair. She no longer can work or drive. She does as they say have good days and bad. I am glad to have found this group. It will give me additional support. Thanks to you all.> >>> >> >> >>

>> >> >> >> > 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.sarcbudd ies.com -- Open all the time.....> >> > Message Archives:-> > http://groups. yahoo.com/ group/Neurosarco idosis/messages> >> > Members Database:-> > Listings of locations, phone numbers, and instant messengers.> > http://groups. yahoo.com/ group/Neurosarco idosis/database> >> >

[Guest guest]

Besides the Archives, there are some great resources in the Links section. There are some caregiver sites, chronic pain/illness, "But You Look Good" booklet info. Hope this helps. I don't want to overwhelm 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

Windows Live™ Hotmail®: Search, add, and share the web’s latest sports videos. Check it out.

[Guest guest]

Hi Rose, Well I think the Wheel chair might be a better option, but I'm like you too, some days I need it other days, maybe not.  This afternoon I ran around town with my husband, we delivered MK and went out to eat, Best Buy to see if they still carry

the charger for my husbands old phone, he lost his PDA, he got through the office, and decided it was too complicated anyway so wanted to go back to his old basic through our family plan, but couldn't find the charger, anyway they

had it, but couldn't add him on until he found out his account number at work. then on to Home depot, and by the end I was hurting and limping, and walking slow, I had one last MK delivery, and my husband said he noticed I was really

working my hips, and I told him that was a limp, and could hardly walk, not working the hips,lol.  Men????  (sorry guys)I found that I didn't have too much pain when I was using the chair at Seminar,but find that I have had more pain since being home, I think it is not using the

chair, but it's hard for some people to understand, and some times I feel like theyare thinking that I am making a big deal out of nothing?  Oh well, maybe I shouldn't wear make up and let my hair go wild and crazy, oh forget it, I can't, .

I am waiting up for my son to get home, he lives in Gillette Wy now, and it's a 4-5 hour drive, and he said he was coming home tonight, but it may get too late for me! Well I guess I should try and get caught up on some other emails. 

God Bless,Marla

 

Marla, I know a midwife with MS.  I usually just saw her once a year, at our annual conference.  One year she was just using a cane, after being in a w/c the year before.  Then the next year she was back in the w/c.  I had just gotten the NS diagnosis, and we had lunch one day.  I mentioned the w/c situation & she told me that lots of people felt bad for her when she relapsed & needed the chair, but she was just grateful to have that as an option when she needed it.  That's helped me when I'm feeling guilty for using a handicapped parking spot, or an electric cart in the store.  Some days I don't need that option & some days I do.  Sometimes I'll go in Walmart & there aren't any carts available, but I decide to just tough it out.  Other days I know that I can't do it, and sit down to wait for a cart.

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: mebramer@...Date: Fri, 24 Jul 2009 10:33:28 -0600

Subject: Re: Hi, I'm new.

Wow, Kay Seminar was outstanding, the training, and the entertainment we received, was incredible, I had so much fun, I took my wheel chair, and was in it, unless in my room.

I had plenty of help with the pushing, at first I felt like a burden, then as the days went by, I felt comfortable, I saw so many others in wheelchairs too, but I can't remember seeing that before.  In fact I was a bit lazy, I didn't do my exercises either.  I am glad to be home,

although behind once again in my emails.,  I need to get back to exercises.I will try to catch up.  Hope you are doing well Jackie. God Bless, Marl a

 

thanks Marla

I am lucky to have a sister who bugs me to move all the time.  I also have a daughter and granddaughter who are on me to walk more.  Sometimes I want to scream  leave me alone I can't do anymore than this.  but I just listen and get up and walk  It does me good.

Kay Convention sounds like it would be fun.  I used to use Kay all the time.  I even have glamour shots from a party I went to.  It was fun. 

You have a great time and you keep on keeping on.

Blessings

Jackie

Hi, I'm new.>> 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>>