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Hi Quint...........came throught loud and clear........good to see you posting again! Missed you.

Hugs,

Darlene

NS Co-Owner/Moderator

HI EVERYONE ONCE AGAIN I AM TRYING TO POST I THINK I IT RIGHT NOW.WILL SEE IF THIS COME THROUGHAND WILL GET BACK TO YOU LATER......QUINTSARCDOGG2@...

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Hi Quint...........came throught loud and clear........good to see you posting again! Missed you.

Hugs,

Darlene

NS Co-Owner/Moderator

HI EVERYONE ONCE AGAIN I AM TRYING TO POST I THINK I IT RIGHT NOW.WILL SEE IF THIS COME THROUGHAND WILL GET BACK TO YOU LATER......QUINTSARCDOGG2@...

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I really don't think they are seizures, though.

Good to see you posting again Quint, you have been missed!!

Marla

-----Original Message-----From: Neurosarcoidosis [mailto:Neurosarcoidosis ]On Behalf Of sarcdogg2@...Sent: Saturday, July 16, 2005 12:09 PMTo: NEUROSARCOIDOSIS (AT) YAHOOGROUPS (DOT) COMSubject: MARLA DEAR SERIZURES ARE EMERGENCYS SO GET TO YOUR DR ASAP..QUINTSARCDOGG2@...

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I really don't think they are seizures, though.

Good to see you posting again Quint, you have been missed!!

Marla

-----Original Message-----From: Neurosarcoidosis [mailto:Neurosarcoidosis ]On Behalf Of sarcdogg2@...Sent: Saturday, July 16, 2005 12:09 PMTo: NEUROSARCOIDOSIS (AT) YAHOOGROUPS (DOT) COMSubject: MARLA DEAR SERIZURES ARE EMERGENCYS SO GET TO YOUR DR ASAP..QUINTSARCDOGG2@...

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Hi Quint,

Sorry to hear that you haven't been doing well. Hope to hear that your dr. puts you on Remicade . This drug seems to be helping a lot of people with sarc. Good luck. Debbie"sarcdogg2@..." wrote:

WELL I AM GLAD I CAN POST AGAIN THE PROBLEM WAS SO SIMPLY I AM EMBARRASSED I DID'NT SEE IT SOONER.SO MUCH FOR THAT.ALOT HAS BEEN GOING ON WITH ME MY PREDS ARE DOWN TO 14MGS BUT MY ARTHRITIS STARTED AGAIN IN MY LEFT SHOULDER THIS IS BAD I AM LEFT HANDED HAD A SHOT IN MY SHOULDER NOW ITS FINE SO NOW ITS MY ARM.MY RHEUMATOLOGIST HAS ANOTHER PT WITH SARC & ARTHRITIS WHO IS IN A WHEELCHAIR HE PUT HIM ON REMICADE NOW HES OUT OF THE WHELLCHAIR AND DOING GREAT.SO HE THINKS I SHOULD BE ON REMICADE.WILL LET YOU KNOW NEXT WEEK IF I START. GOOD TO BE BACK POSTING....QUINTSARCDOGG2@...~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.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

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Hi Quint,

Sorry to hear that you haven't been doing well. Hope to hear that your dr. puts you on Remicade . This drug seems to be helping a lot of people with sarc. Good luck. Debbie"sarcdogg2@..." wrote:

WELL I AM GLAD I CAN POST AGAIN THE PROBLEM WAS SO SIMPLY I AM EMBARRASSED I DID'NT SEE IT SOONER.SO MUCH FOR THAT.ALOT HAS BEEN GOING ON WITH ME MY PREDS ARE DOWN TO 14MGS BUT MY ARTHRITIS STARTED AGAIN IN MY LEFT SHOULDER THIS IS BAD I AM LEFT HANDED HAD A SHOT IN MY SHOULDER NOW ITS FINE SO NOW ITS MY ARM.MY RHEUMATOLOGIST HAS ANOTHER PT WITH SARC & ARTHRITIS WHO IS IN A WHEELCHAIR HE PUT HIM ON REMICADE NOW HES OUT OF THE WHELLCHAIR AND DOING GREAT.SO HE THINKS I SHOULD BE ON REMICADE.WILL LET YOU KNOW NEXT WEEK IF I START. GOOD TO BE BACK POSTING....QUINTSARCDOGG2@...~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.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

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Hi Quint,

Sorry to hear that you haven't been doing well. Hope to hear that your dr. puts you on Remicade . This drug seems to be helping a lot of people with sarc. Good luck. Debbie"sarcdogg2@..." wrote:

WELL I AM GLAD I CAN POST AGAIN THE PROBLEM WAS SO SIMPLY I AM EMBARRASSED I DID'NT SEE IT SOONER.SO MUCH FOR THAT.ALOT HAS BEEN GOING ON WITH ME MY PREDS ARE DOWN TO 14MGS BUT MY ARTHRITIS STARTED AGAIN IN MY LEFT SHOULDER THIS IS BAD I AM LEFT HANDED HAD A SHOT IN MY SHOULDER NOW ITS FINE SO NOW ITS MY ARM.MY RHEUMATOLOGIST HAS ANOTHER PT WITH SARC & ARTHRITIS WHO IS IN A WHEELCHAIR HE PUT HIM ON REMICADE NOW HES OUT OF THE WHELLCHAIR AND DOING GREAT.SO HE THINKS I SHOULD BE ON REMICADE.WILL LET YOU KNOW NEXT WEEK IF I START. GOOD TO BE BACK POSTING....QUINTSARCDOGG2@...~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.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

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  • 2 weeks later...
Guest guest

Hello Kim,

My faithful friend, how are you doing? I hope all is well with you and

your family.

Thank you so much for thinking of me. I have been thinking of you too

as well. I still check the post on a daily basis. Although I have not

posted anything lately, I am still their with you and everyone of my

sarc brothers and sister. So do not think that I have stop caring and

praying for everyone of you.

Lately I have been trying to keep busy. I have been cooking dinner on

Tuesday, Wednesday and Thursday. I have been baby sitting my grandson

soon to be 4 years old. And what a challenge that can be! He truly

wears me out! Also, I have been watering the garden. Well my grandson

has been watering the garden. He loves doing that. It gives him a

chance to play, get wet and escape the heat wave we've been having and

it also gives him a sense of independence and control when I let him

hold the water hose. Of course he gets soak and wet, (but he doesn't

mind and neither do I) and he has himself a good time in the process.

It also gives me a chance to unwind, watch him have fun and I also

think back to the times when I was a little boy playing with the water

and watering the garden at my grandparents house. So this is a win win

situation for both of us huh? :)

I have also been keeping busy with scheduling appointments for dental

cleaning, neurologist, urologist and Otolaryngologist. I have decided

to have the cochlear implant. And I am going through all the

preliminary work for that.

I am keeping busy with the household expenses. Paying bills on line is

such a relief! No more checks to write, envelopes to lick or stamps to

buy! On line bill payments are " marvelous darlin. " Try it sometime if

you haven't already.

And I am also enrolled in an on line study course that allows me to

work at my own pace. This too is GREAT! I am very excited about this

new venture. It keeps my mind stimualted, growing and clear, instead

of being dull, stagnant and foggy! I really enjoy this course.

So, that is about it for me. Also,I will be going back to Florida

again during August for a visit with my Mom and other relatives. I

have to take care some of my father's business regarding his estate,

probate, taxes, medico-legal issues etceteras. But I am not stressed

by it at all. On the contrary my dear friend, I look at it as quite a

light challenge and a HUGE Blessing as well. I am looking forward to

it.

Since my illness, I have learned to pace myself in everything I do. So

I am very good at not over doing things these days. I have finally

learned how to take it easy, relax, and pace myself. And smell the

roses along the way! Now isn't that grand? And I have all of this to

be thankful for because of my illness.

So if you know of any over achievers that want to cut back some and

stop over doing it so much, please let them know that I have the

perfect remedy for them! Nahhhhhh! Just kidding. :)

Well that's about it for me my dear friend. Tomorrow I am getting up

early for my biweekly barber appointment. Yep! Its time for a

haircut. I am beginning to look homeless. And my wife does not like

that.

So take care my dear friend and sister. God bless you, keep you,

strengthen you and protect you and your family at all cost.

Amen.

Your brother,

,

And thanks for your concerns. I too think of you regularly. Everytime

I log on, you are with me in thougth and prayer, so that is daily my

dear friend! {{{{{{{{ :) }}}}}}}}

> ,

>

> It is really good to hear from you, how have you been? Please write

and let

> us know what is going on with you. How are you feeling? What have

you been

> up to?

>

> I am alwyas thinking of you when you are quiet.

>

> Take care,

> Kim

> NS Moderator

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Dear ,

Thank you for the wonderful letter. It was very nice this morning to read such a nice update. You sound happy and life seems good. I am glad and smiling. I needed a bit of calm and serenity this morning. Thank you for painting a very peaceful picture for me. I closed my eyes and just counted down for the next few weeks to pass and all our moving about to be over with. I am anxious to see my husband and all of us to be together again. To have my own "space and life" again. Even though leaving the older two will be very hard, it is their time to move on and the next step in their lives too. The next phase, they are excited about everything now.

It sounds like you have a great time with your grandson! I remember playing in water hoses when I was young as well, and even my kids love this pasttime. Here and in Kuwait as well. You cant beat a water hose can yoiu?

How wonderful that you have taken the initiative to study online! I have taken courses online before, several, and even my kids study online. The older ones have taken high school courses and university courses online, but even my younger kids, elementary and middle school age have and are taking courses online. They love it, and what a wonderful habit to teach them! Good for you , and you are right the best thing about them is that you can pace yourself and also, you can take the subject matter further, as deep as you want. I love the independence of online study. Some people don't. But I always have. I started this because I was in Kuwait and my options were limited and I missed studying so much, having had turned into such a permenant student over the years, then I discovered options for one of my children out of a particular need and our use of online study grew from there. Good luck with it, I am really happy that you discovered this.

Good luck with the cochealer inplant. I do not know so much about this procedure. Will have to study up.

We are still having "glitches" with our moving day...waiting around for things to work out or not and nto sure if we are going today or not... oh brother, I do wish soemtimes things would just go smoothly. Wouldnt that be nice.

Take care,

Kim

NS Moderator

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I too get skin lesions about 3 different types. I have a lot of small raised skin tone colored ones, you can feel them, and can only see them up close, which is good, as I have those on my face. Then I have red raised ones, under the skin, that are tender in my legs. and I have ones on my arms, or anywhere I get son, that start out looking like a blister, without the fluid in the blister, but just touch the skin and it falls off, then the skin just starts building up, it eventually leaves a scar that looks like it was a burn. They are annoying, but live able, I have a special cream too, but it really doesn't do that much, neither does cortisone cream, they just run there course and I stay out of the sun.

That was probably more information then you wanted!!

Marla

Skin Lesions:

Many of us get them and yes they do leave scars. Mayo gave me Steriod Cream to put on them to help to heal them.. The dermatologist that looked at mine said it looks like Exzema. It looked at you said with raised edges. And I told her whats the difference if that is what you think it is then put that down. Knowing there is no cure for them anyway.. A lot of us get them, I have dexamethasone cream.

M

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,

Nothing is little with this disease, sometimes the lesions on my skin burn more then the nerve pain. today I had another lesions peel off, leaving very sore exposed skin, and that feels like nerve pain too. so no matter what we are dealing with, it is allot. Hope you find relief soon.

Marla

-----Original Message-----From: Neurosarcoidosis [mailto:Neurosarcoidosis ]On Behalf Of Don and ClotiauxSent: Saturday, August 06, 2005 7:15 PMTo: Neurosarcoidosis Subject: Re:

Hi Marla,

I tell ya this has been an experience with my skin. I have the blistering, as you explained. You are right not to much helps. When I ever see the dermatologist they will probably all be gone. (that would be nice) I bet my pulmonary is going to give me a medicine to take orally and I will fight the Prednisone. What little fight I have left in me. The side effects taking Prednisone out weigh not taking it. I hope they will give me something else. Of course, every drug has side effects.

I know this is a little complaint compared to the Neuro pain, but I appreciate the information.

Skin Lesions:

Many of us get them and yes they do leave scars. Mayo gave me Steriod Cream to put on them to help to heal them.. The dermatologist that looked at mine said it looks like Exzema. It looked at you said with raised edges. And I told her whats the difference if that is what you think it is then put that down. Knowing there is no cure for them anyway.. A lot of us get them, I have dexamethasone cream.

M

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,

Nothing is little with this disease, sometimes the lesions on my skin burn more then the nerve pain. today I had another lesions peel off, leaving very sore exposed skin, and that feels like nerve pain too. so no matter what we are dealing with, it is allot. Hope you find relief soon.

Marla

-----Original Message-----From: Neurosarcoidosis [mailto:Neurosarcoidosis ]On Behalf Of Don and ClotiauxSent: Saturday, August 06, 2005 7:15 PMTo: Neurosarcoidosis Subject: Re:

Hi Marla,

I tell ya this has been an experience with my skin. I have the blistering, as you explained. You are right not to much helps. When I ever see the dermatologist they will probably all be gone. (that would be nice) I bet my pulmonary is going to give me a medicine to take orally and I will fight the Prednisone. What little fight I have left in me. The side effects taking Prednisone out weigh not taking it. I hope they will give me something else. Of course, every drug has side effects.

I know this is a little complaint compared to the Neuro pain, but I appreciate the information.

Skin Lesions:

Many of us get them and yes they do leave scars. Mayo gave me Steriod Cream to put on them to help to heal them.. The dermatologist that looked at mine said it looks like Exzema. It looked at you said with raised edges. And I told her whats the difference if that is what you think it is then put that down. Knowing there is no cure for them anyway.. A lot of us get them, I have dexamethasone cream.

M

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  • 1 month later...

Good to hear from you Quint. Good luck with the Remicade. Luv, Debbie"sarcdogg2@..." wrote:

HI EVERYONE JUST CHECKING IN 9/23 WAS MY SECOND REMICADE TX SO FAR SO GOOD.I HAVE A NEW E-MAIL ITS SARCDOGG@... I AM SENDING MY LOVE TO EVERYONE WILL GET BACK TO YOU SOON......QUINTSARCDOGG2@...

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Good to hear from you Quint. Good luck with the Remicade. Luv, Debbie"sarcdogg2@..." wrote:

HI EVERYONE JUST CHECKING IN 9/23 WAS MY SECOND REMICADE TX SO FAR SO GOOD.I HAVE A NEW E-MAIL ITS SARCDOGG@... I AM SENDING MY LOVE TO EVERYONE WILL GET BACK TO YOU SOON......QUINTSARCDOGG2@...

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Good to hear from you Quint. Good luck with the Remicade. Luv, Debbie"sarcdogg2@..." wrote:

HI EVERYONE JUST CHECKING IN 9/23 WAS MY SECOND REMICADE TX SO FAR SO GOOD.I HAVE A NEW E-MAIL ITS SARCDOGG@... I AM SENDING MY LOVE TO EVERYONE WILL GET BACK TO YOU SOON......QUINTSARCDOGG2@...

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  • 2 weeks later...

I read the letter and because of my income I am

expected †ø spend every penny on my medical expenses

which total over $2,000 a month. I don't believe

living on disability and having our disease lucky at

all. I pray for all of us to heal.

,

was not meaning that to be this ill, to live on disability is "lucky." I do believe that right now what he is feeling is that ANYTHING would be better than where he is at with his situation.

You are right, living on disability, having to spend all of our income every month before getting help with medical costs, not even taking in household expenses, food, cars, etc-- that some are still not getting the help we need.

It is sinful that a nation that is as "rich" as our government would like us to believe, cannot afford medical care for all its people.

's response was not a direct attack on you, it is his frustration, anger, helplessness at having coverage, but not a single doctor with a brain enough to help him.

He too, like so many, have lost their homes, their jobs, their families, the ability to afford transportation, and he's at the end of his rope. All I can say, is hang-on, we'll tie a bunch of ropes together, and that way we can help each other.

Please understand the emotions and frustrations that both of you have, and how very similar they are. It's just the difference in "man-speak" vs. women-speak. The subject is the same.

Sincerely,

Tracie

NS Co-owner/moderator

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I read the letter and because of my income I am

expected †ø spend every penny on my medical expenses

which total over $2,000 a month. I don't believe

living on disability and having our disease lucky at

all. I pray for all of us to heal.

,

was not meaning that to be this ill, to live on disability is "lucky." I do believe that right now what he is feeling is that ANYTHING would be better than where he is at with his situation.

You are right, living on disability, having to spend all of our income every month before getting help with medical costs, not even taking in household expenses, food, cars, etc-- that some are still not getting the help we need.

It is sinful that a nation that is as "rich" as our government would like us to believe, cannot afford medical care for all its people.

's response was not a direct attack on you, it is his frustration, anger, helplessness at having coverage, but not a single doctor with a brain enough to help him.

He too, like so many, have lost their homes, their jobs, their families, the ability to afford transportation, and he's at the end of his rope. All I can say, is hang-on, we'll tie a bunch of ropes together, and that way we can help each other.

Please understand the emotions and frustrations that both of you have, and how very similar they are. It's just the difference in "man-speak" vs. women-speak. The subject is the same.

Sincerely,

Tracie

NS Co-owner/moderator

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I think it was the " all that and a bag of chips comment " :)

janet

>

> Dear

>

> How are feeling after being home for a few days? I hope that all is

okay

> after your treatments. My husband is taking me out tonight for

Italian food,

> quite an accomplishment on my part since it is Ramadan here and

this means he

> will have to have his futoor in a restaurant instead of at his

parents. I

> have been so tired lately, especially by mid afternoon early

evening, I hope I

> hae the energy to energy to actually go and really energy the

evening out.

> We are also supposed to go and actually buy a - wait for this!! a

DINING

> ROOM SET! OH I CANT WAIT! an actual table to sit at, what a luxury

this will

> be if it actually happens.

>

> I hope you are quiet because you and your grandson are playing

around or

> you are resting peacefully catching up on a good book.

>

> Take care

> Kim

> NS Moderator

>

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I think it was the " all that and a bag of chips comment " :)

janet

>

> Dear

>

> How are feeling after being home for a few days? I hope that all is

okay

> after your treatments. My husband is taking me out tonight for

Italian food,

> quite an accomplishment on my part since it is Ramadan here and

this means he

> will have to have his futoor in a restaurant instead of at his

parents. I

> have been so tired lately, especially by mid afternoon early

evening, I hope I

> hae the energy to energy to actually go and really energy the

evening out.

> We are also supposed to go and actually buy a - wait for this!! a

DINING

> ROOM SET! OH I CANT WAIT! an actual table to sit at, what a luxury

this will

> be if it actually happens.

>

> I hope you are quiet because you and your grandson are playing

around or

> you are resting peacefully catching up on a good book.

>

> Take care

> Kim

> NS Moderator

>

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I think it was the " all that and a bag of chips comment " :)

janet

>

> Dear

>

> How are feeling after being home for a few days? I hope that all is

okay

> after your treatments. My husband is taking me out tonight for

Italian food,

> quite an accomplishment on my part since it is Ramadan here and

this means he

> will have to have his futoor in a restaurant instead of at his

parents. I

> have been so tired lately, especially by mid afternoon early

evening, I hope I

> hae the energy to energy to actually go and really energy the

evening out.

> We are also supposed to go and actually buy a - wait for this!! a

DINING

> ROOM SET! OH I CANT WAIT! an actual table to sit at, what a luxury

this will

> be if it actually happens.

>

> I hope you are quiet because you and your grandson are playing

around or

> you are resting peacefully catching up on a good book.

>

> Take care

> Kim

> NS Moderator

>

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Speaking of good books. . . .I'm on the second of the series that Matt recommended and I'm really enjoying them. The first one was the #1 Ladies Detective Agency, by Mccall .

Ramblin' Rose

Moderator

From: NeuroSarcoid66@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Date: Wed, 12 Oct 2005 04:20:54 EDT

Dear

How are feeling after being home for a few days? I hope that all is okay after your treatments. My husband is taking me out tonight for Italian food, quite an accomplishment on my part since it is Ramadan here and this means he will have to have his futoor in a restaurant instead of at his parents. I have been so tired lately, especially by mid afternoon early evening, I hope I hae the energy to energy to actually go and really energy the evening out. We are also supposed to go and actually buy a - wait for this!! a DINING ROOM SET! OH I CANT WAIT! an actual table to sit at, what a luxury this will be if it actually happens.

I hope you are quiet because you and your grandson are playing around or you are resting peacefully catching up on a good book.

Take care

Kim

NS Moderator~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.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

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--- Rose mamadogrose@...> wrote:

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

Speaking of good books. . . .I'm on the second of the

series that Matt recommended and I'm really enjoying

them. The first one was the #1 Ladies Detective

Agency, by Mccall .

Ramblin' Rose

Glad you enjoyed the books- they get better as u go on

- Matt

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

From: NeuroSarcoid66@...

Reply-To: Neurosarcoidosis

To: Neurosarcoidosis

Subject:

Date: Wed, 12 Oct 2005 04:20:54 EDT

Dear

How are feeling after being home for a few days? I

hope that all is okay after your treatments. My

husband is taking me out tonight for Italian food,

quite an accomplishment on my part since it is Ramadan

here and this means he will have to have his futoor in

a restaurant instead of at his parents. I have been

so tired lately, especially by mid afternoon early

evening, I hope I hae the energy to energy to actually

go and really energy the evening out. We are also

supposed to go and actually buy a - wait for this!! a

DINING ROOM SET! OH I CANT WAIT! an actual table to

sit at, what a luxury this will be if it actually

happens.

I hope you are quiet because you and your grandson

are playing around or you are resting peacefully

catching up on a good book.

Take care

Kim

NS Moderator

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

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

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  • 4 weeks later...
  • 1 month later...

Yes I would like to see the pictures if you could send

them to me. I also had what I thought was a boil in

the groin area but the steroids have made my belly so

big I couldn't bend over & get a good look at it! LOL

I think we all have to have a little warped to deal

with this disease. You've all been very helpful & I

will watch for those bumps & get in to show my sarc dr

if or when I get another..

grannylunatic@...

__________________________________________________

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,

Could you please email me a picture of your legs? I have never seen sarcoid of

the skin. Thanks.

Terri

>

> I have skin sarcoid, and they start as you described. They do look like spider

bites and then they develop pus under them.

>

> I sent a picture of my sarc on my legs a while back. It was a very gross

looking picture. Not sure if you saw it or not.

>

> I did have my spots biopsied and it did come back sarcoid. YAHOOOOOO!!! How

exciting huh??? oh mylanta..... Sorry I do have a very warped sense of humor....

>

> If you would like me to resend those pics let me know. I did tell someone they

could put them on the website under skin sarc, but they are not there yet. Oh

well, such is life in the big city.

>

> Oh my spots are very painful. Like if someone touches or bumps into my legs I

wanna about go through the roof.........

>

> Take care, i hope this has helped somewhat.

>

> from Iowa'

>

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