Re: (unknown)

[Guest guest]

Welcome and THANK YOU for offering your perspective! I so look forward

to hearing your answers to everyone's questions.

Congratulations on all of your many acheivements! What a positive thing

you've given everyone to look forward to.

Jeanne

Auchter wrote:

>

> Hi,

>

> I am new to the RSS support group. I am a 25 year old

> young woman with RSS. I was diagnosed when I was 2 by

> Dr. of s Hopkins. I have read the recent

> emails and there seem to be a lot of concerns out

> there about your children with RSS. If you have any

> questions about how they feel, what later development

> will be like, etc., please feel free to ask me. For

> the record, RSS is not anything debilitating. Yes, in

> early childhood there are a lot of medical problems,

> hospital visits, etc. and it can seem overwhelming,

> but it does go away with age. I had another friend

> who lived in Washington (I live in Texas) who has RSS

> and she found it went away as well. Though small, I

> was able to participate in cheerleading, volleyball,

> gymnastic and a whole array of academic endeavors,

> including honor society and I also graduated in the

> top 10% of my high school class and am currently in

> college pursuing a degree in pediatric clinical

> psychology. So, all hope is not lost and all it takes

> is a little patience and understanding to get through

> the difficult years. However, I do feel strongly

> about having RSS children speak with a counselor or

> therapist as adolescence nears because not only is

> puberty a difficult time, but when you are not like

> the other kids, it makes it even more difficult.

>

> Hope this helps!

>

> Sincerely,

>

> Auchter

> --- kmerrith kkm@...> wrote:

> > Hi Angie,

> >

> > Welcome to our group.

> >

> > I am sure we can answer any question you have.

> > Please feel

> > free to ask just about anything.

> >

> > I hope we can help.

> >

> > Ken M

> >

> >

> >

> > > Hi i have a son at the age of 4 the might have rss

> > but i need to

> > talk

> > > to someeone can someone contact me please.

> > >

> > > Angie

> >

> >

>

> __________________________________________________

>

[Guest guest]

,

Your name sounds really, really familiar. Is it possible that I

used to speak to your mom when my son Max was a baby? Max is now

almost 14, so you would have been 11 at the time. I know I knew an

from Texas who had seen Dr. . It must be you!!!

I agree that psychotherapy is vitally important. Max has been in

therapy for a couple of years on a weekly basis and the difference

in his life is amazing. There is so much to work out that we, as

parents, just cannot simply because we are too close.

I can say, however, as a parent that it can also seem threatening. I

worry that Max will discuss private things and then the doctor will

think that I am a bad parent. Well, that used to happen. I am so

used to it now and she is so nonthreatening that I don't really give

it a thought anymore. But I do remember how I used to feel!!!

Anyway, welcome to the group and thanks for sharing so much. I'd

love to talk to you privately - or at least your mom. My email

address is magicrss@ hotmail.com. (There is a space between the @

and hotmail so that my whole address will appear.)

Jodi Zwain

[Guest guest]

,

Your name sounds really, really familiar. Is it possible that I

used to speak to your mom when my son Max was a baby? Max is now

almost 14, so you would have been 11 at the time. I know I knew an

from Texas who had seen Dr. . It must be you!!!

I agree that psychotherapy is vitally important. Max has been in

therapy for a couple of years on a weekly basis and the difference

in his life is amazing. There is so much to work out that we, as

parents, just cannot simply because we are too close.

I can say, however, as a parent that it can also seem threatening. I

worry that Max will discuss private things and then the doctor will

think that I am a bad parent. Well, that used to happen. I am so

used to it now and she is so nonthreatening that I don't really give

it a thought anymore. But I do remember how I used to feel!!!

Anyway, welcome to the group and thanks for sharing so much. I'd

love to talk to you privately - or at least your mom. My email

address is magicrss@ hotmail.com. (There is a space between the @

and hotmail so that my whole address will appear.)

Jodi Zwain

[Guest guest]

,

Your name sounds really, really familiar. Is it possible that I

used to speak to your mom when my son Max was a baby? Max is now

almost 14, so you would have been 11 at the time. I know I knew an

from Texas who had seen Dr. . It must be you!!!

I agree that psychotherapy is vitally important. Max has been in

therapy for a couple of years on a weekly basis and the difference

in his life is amazing. There is so much to work out that we, as

parents, just cannot simply because we are too close.

I can say, however, as a parent that it can also seem threatening. I

worry that Max will discuss private things and then the doctor will

think that I am a bad parent. Well, that used to happen. I am so

used to it now and she is so nonthreatening that I don't really give

it a thought anymore. But I do remember how I used to feel!!!

Anyway, welcome to the group and thanks for sharing so much. I'd

love to talk to you privately - or at least your mom. My email

address is magicrss@ hotmail.com. (There is a space between the @

and hotmail so that my whole address will appear.)

Jodi Zwain

[Guest guest]

,

I was glad to read your post. My daughter has mild RSS, we have been lucky so

far that medical issues are mild. Our Endo hasn't suggested GH yet but

although her weight has gotten better, she has had no height gains in the

last 9 months and I know eventually we'll have to decide this issue. Many

parents on this list have had to choose for their children in this area. It

can be a very difficult decision not matter which path is chosen. I have

great respect for each parent's desire to do what is best for their own

child. I can only decide for mine, and I feel that I do not want to use GH to

affect her height. Still, I would really love your opinion on what I as a

parent can best do to help her " celebrate " and enjoy both her differences and

her commonality as a human being.

, Mom to Destiny 3 1/2 (RSS)

[Guest guest]

,

I was glad to read your post. My daughter has mild RSS, we have been lucky so

far that medical issues are mild. Our Endo hasn't suggested GH yet but

although her weight has gotten better, she has had no height gains in the

last 9 months and I know eventually we'll have to decide this issue. Many

parents on this list have had to choose for their children in this area. It

can be a very difficult decision not matter which path is chosen. I have

great respect for each parent's desire to do what is best for their own

child. I can only decide for mine, and I feel that I do not want to use GH to

affect her height. Still, I would really love your opinion on what I as a

parent can best do to help her " celebrate " and enjoy both her differences and

her commonality as a human being.

, Mom to Destiny 3 1/2 (RSS)

[Guest guest]

,

I was glad to read your post. My daughter has mild RSS, we have been lucky so

far that medical issues are mild. Our Endo hasn't suggested GH yet but

although her weight has gotten better, she has had no height gains in the

last 9 months and I know eventually we'll have to decide this issue. Many

parents on this list have had to choose for their children in this area. It

can be a very difficult decision not matter which path is chosen. I have

great respect for each parent's desire to do what is best for their own

child. I can only decide for mine, and I feel that I do not want to use GH to

affect her height. Still, I would really love your opinion on what I as a

parent can best do to help her " celebrate " and enjoy both her differences and

her commonality as a human being.

, Mom to Destiny 3 1/2 (RSS)

[Guest guest]

Dear ,

I took growth hormones from 11-13 and only gained

about an inch, maybe less, I don't recall exactly. I

took them in injections and gave them to myself every

night. I know that for each person the height gained

is different and we did start late with me, since I

was nearly bone growth mature at that time. I don't

think it's so important on focusing on gaining height,

but on other things. I spoke with my mother today and

she said to let everyone in the group know that what

she did was try to focus on the positive, things I

could do and could accel at instead of constantly

worrying about height, etc. If you are in a contant

state of worry or always trying to improve your child

by changing their height, they will pick up on that in

more likely a negative way. Also, I personally have

STRONG feelings about the surgery in which you can

stretch the limbs and add height by breaking them. I

think this is a horrible idea and takes away so much

from the child's quality of life. It is not worth it,

in my opinion, in the long run. I'm so glad my mother

opted not to do this.

--- zentude43@... wrote:

> ,

> I was glad to read your post. My daughter has mild

> RSS, we have been lucky so

> far that medical issues are mild. Our Endo hasn't

> suggested GH yet but

> although her weight has gotten better, she has had

> no height gains in the

> last 9 months and I know eventually we'll have to

> decide this issue. Many

> parents on this list have had to choose for their

> children in this area. It

> can be a very difficult decision not matter which

> path is chosen. I have

> great respect for each parent's desire to do what is

> best for their own

> child. I can only decide for mine, and I feel that I

> do not want to use GH to

> affect her height. Still, I would really love your

> opinion on what I as a

> parent can best do to help her " celebrate " and enjoy

> both her differences and

> her commonality as a human being.

> , Mom to Destiny 3 1/2 (RSS)

>

__________________________________________________

[Guest guest]

Dear ,

I took growth hormones from 11-13 and only gained

about an inch, maybe less, I don't recall exactly. I

took them in injections and gave them to myself every

night. I know that for each person the height gained

is different and we did start late with me, since I

was nearly bone growth mature at that time. I don't

think it's so important on focusing on gaining height,

but on other things. I spoke with my mother today and

she said to let everyone in the group know that what

she did was try to focus on the positive, things I

could do and could accel at instead of constantly

worrying about height, etc. If you are in a contant

state of worry or always trying to improve your child

by changing their height, they will pick up on that in

more likely a negative way. Also, I personally have

STRONG feelings about the surgery in which you can

stretch the limbs and add height by breaking them. I

think this is a horrible idea and takes away so much

from the child's quality of life. It is not worth it,

in my opinion, in the long run. I'm so glad my mother

opted not to do this.

--- zentude43@... wrote:

> ,

> I was glad to read your post. My daughter has mild

> RSS, we have been lucky so

> far that medical issues are mild. Our Endo hasn't

> suggested GH yet but

> although her weight has gotten better, she has had

> no height gains in the

> last 9 months and I know eventually we'll have to

> decide this issue. Many

> parents on this list have had to choose for their

> children in this area. It

> can be a very difficult decision not matter which

> path is chosen. I have

> great respect for each parent's desire to do what is

> best for their own

> child. I can only decide for mine, and I feel that I

> do not want to use GH to

> affect her height. Still, I would really love your

> opinion on what I as a

> parent can best do to help her " celebrate " and enjoy

> both her differences and

> her commonality as a human being.

> , Mom to Destiny 3 1/2 (RSS)

>

__________________________________________________

[Guest guest]

Dear ,

I took growth hormones from 11-13 and only gained

about an inch, maybe less, I don't recall exactly. I

took them in injections and gave them to myself every

night. I know that for each person the height gained

is different and we did start late with me, since I

was nearly bone growth mature at that time. I don't

think it's so important on focusing on gaining height,

but on other things. I spoke with my mother today and

she said to let everyone in the group know that what

she did was try to focus on the positive, things I

could do and could accel at instead of constantly

worrying about height, etc. If you are in a contant

state of worry or always trying to improve your child

by changing their height, they will pick up on that in

more likely a negative way. Also, I personally have

STRONG feelings about the surgery in which you can

stretch the limbs and add height by breaking them. I

think this is a horrible idea and takes away so much

from the child's quality of life. It is not worth it,

in my opinion, in the long run. I'm so glad my mother

opted not to do this.

--- zentude43@... wrote:

> ,

> I was glad to read your post. My daughter has mild

> RSS, we have been lucky so

> far that medical issues are mild. Our Endo hasn't

> suggested GH yet but

> although her weight has gotten better, she has had

> no height gains in the

> last 9 months and I know eventually we'll have to

> decide this issue. Many

> parents on this list have had to choose for their

> children in this area. It

> can be a very difficult decision not matter which

> path is chosen. I have

> great respect for each parent's desire to do what is

> best for their own

> child. I can only decide for mine, and I feel that I

> do not want to use GH to

> affect her height. Still, I would really love your

> opinion on what I as a

> parent can best do to help her " celebrate " and enjoy

> both her differences and

> her commonality as a human being.

> , Mom to Destiny 3 1/2 (RSS)

>

__________________________________________________

[Guest guest]

Hi ,

It's great to hear how well you are doing. We all appreciate

hearing " success " stories. Thanks for joining our group.

Judith, Steve, (RSS) and (non RSS) 28 mo twins

> > > Hi i have a son at the age of 4 the might have rss

> > but i need to

> > talk

> > > to someeone can someone contact me please.

> > >

> > > Angie

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Janet,

I just figured that you had gotten busy. Sorry to hear that your

computer is on the fritz! That would spell disaster in our house! LOL Four

hours isn't all that far away. So far, we haven't found any RSS kids closer

than that to us.

Pat (g-ma to )

[Guest guest]

my lasted 6 monthrs 8 days this was lieghs disease shannon

[Guest guest]

To whom it may concern,

That is not an easy question to answer. My daughter died at 8 and a half yearsold. She had delays, learning problems and many minor symptoms all her life. She got a virus one day, and lost all her abilities in 2 months and died. It is not predictable. There are many forms, some more severe than others. MY daughter had one of the worst forms and was not supposed tolive past 3 and she did. Guess what, my 6 year old Leanna has the same form, is alive and doing well. If you met her, you would never know she had any problems. She does have symptoms, though, and has had them since she was born. Ther are adults with a huge variety of effects. I believe the latest statistic I read was that children diagnosed with mito, 50% will die before teen years. That is horrible, however keep in mind that knowing about mito is so knew that I personally don't hold to those numbers. I have 2 girls with a severe form and neither one has fallen into the stereotype of this disease in their life. In fact, because they were not typical, they went undiagnosed until a few weeks before the death of my older one. Once the serious symtoms started, it was as quiuck as lightning that this disease took my daughters life, and we had no fighting chance. I am sorry if I have confused you more, but this disease is beyond confusing. One thing I know for sure. It is evil, horrible,and disgusting. At least with cancer you have a fighting chance From,

Suhad Haddad Mom to Samya in heave (www.samya.org) and 6 year old Leanna. If you visit samya's website, you can get more info

[Guest guest]

I was wondering what the first symptoms were when you first found out you had sarcoid in the lungs? Did you have these have these feelings of pressure like a ton of weight on your chest?

Debbie,

This is exactly what I was doing, I was using the inhalers so often that my heart was pounding, and my breathing still was labored. I always describe it as having an elephant on my chest.

Do get in, get a chest xray and make sure it's not pneumonia (steroids and immunosuppressants can make it difficult to cough, so you won't necessarily have that sign).

If they see anything in your lungs, bronchoscopies are not a big deal. That way too they can make sure that you aren't developing any other problem (infection) along with sarc.

Hope you are taking care of yourself,

Hugs,

TRacie

[Guest guest]

Debbie, I had a cough & shortness of breath, especially when climbing hills or stairs. I didn't think much about it at first, because I had taken a b/p med for years that causes a cough, I had asthma, and I was out of shape. But the cough got terrible; sometimes I would have to leave in the middle of a patient visit because I was coughing so badly; often I peed on myself (not a trickle, but a flood) or vomited. By that time, the chest x-ray and CT scan showed some scarring & collapse of the right middle lobe. So I'd get it checked out. Better safe than sorry. . . .

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: (unknown)Date: Thu, 18 Aug 2005 07:38:57 -0700 (PDT)

To all:

Hi . I have a question and many of you can probably help me here. I have never been diagnosed with sarcoid in my lungs - just in my joints and my skin. Lately , I have been feeling a heavy pressure in my lungs and finding it hard to breathe. I also have to use my asthma inhalers a lot more often and they aren't helping me to breathe as well as they used to.

I was wondering what the first symptoms were when you first found out you had sarcoid in the lungs? Did you have these have these feelings of pressure like a ton of weight on your chest?

Thanks for any advice. Debbie

Start your day with Yahoo! - make it your home page ~~~~ *** ~~~ *** ~~~ *** ~~~~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

[Guest guest]

Thanks for the advice Rose, I think I will. DebbieRose wrote:

Debbie, I had a cough & shortness of breath, especially when climbing hills or stairs. I didn't think much about it at first, because I had taken a b/p med for years that causes a cough, I had asthma, and I was out of shape. But the cough got terrible; sometimes I would have to leave in the middle of a patient visit because I was coughing so badly; often I peed on myself (not a trickle, but a flood) or vomited. By that time, the chest x-ray and CT scan showed some scarring & collapse of the right middle lobe. So I'd get it checked out. Better safe than sorry. . . .

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: (unknown)Date: Thu, 18 Aug 2005 07:38:57 -0700 (PDT)

To all:

Hi . I have a question and many of you can probably help me here. I have never been diagnosed with sarcoid in my lungs - just in my joints and my skin. Lately , I have been feeling a heavy pressure in my lungs and finding it hard to breathe. I also have to use my asthma inhalers a lot more often and they aren't helping me to breathe as well as they used to.

I was wondering what the first symptoms were when you first found out you had sarcoid in the lungs? Did you have these have these feelings of pressure like a ton of weight on your chest?

Thanks for any advice. Debbie

Start your day with Yahoo! - make it your home page ~~~~ *** ~~~ *** ~~~ *** ~~~~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

[Guest guest]

--- Debbie rozebudz36@...> wrote:

> Hi Matt,

> SOunds like you had a good trip. I live in

> southeastern NH. About halfway in between Boston

> and Madison ,NH. It is nice up there in NH,

> isn't it? That's a lot of land and on mountain,

> too. It must be really beautiful this time of

> year with the foliage and all. THat surprised

> me. I didn't know that you had family so close.

> Salem MA is about 45 mins away from us too. We

> went there on school trips to see where the

> famous witch trials were.

> Well, I am glad you had a good time even though

> it wore you out.

> GOod luck with the procedure on your eyes. And

> also on your Disability claim. I hope everything

> works out for you. Luv, Debbie

>

> Hi Debbie-Thanks for the nice message- Where in N.H.

do u live-It really was pretty up there- I go to my

moms farm about every other year-I really like New

England-almost moved to Boston but didnt know if i

could deal with the cold winters-Take care- Matt

>-

>

>

>

>

> Reply-To: Neurosarcoidosis

> To: Neurosarcoidosis

> Subject: matt in seattle

> Date: Fri, 21 Oct 2005 23:02:52 -0000

>

> Had an eye doctor appt.yesterday, have to have

> surgery

> next thursday for Glacoma. Eye

> presssure was way up again. Met with my lawyer

> today

> to discuss my upcoming disabiliby

> hearing-He feels we have a strong case but told

> me

> that the Judge aassiged to my cae was

> a tough one who turned down a lot of requests for

> disaility- Told me he also gets

> overruled alot of the time

> little more about my trip- First,Mom and i drove

> from

> Seattle to Chicago. we went through

> Idaho, Montana, N, Dakota Minnisota and Wiconsin,

>

> We

> spent three days in Chicago, with

> my mom showing where we used to live when i was a

> little boy. We also toke a boat trip

> along the Chicago river to look at the downtown

> area-

> Really liked Chicago. Our next stop

> was Cleveland, Again mom took me to were we lived

>

> when

> I was between the ages of 5 to

> nine. We also went downtown and i saw the rock

> and

> roll museum. From there we went to

> Pittsburgh to visit friends and i saw a great

> museum

> dedicated to old cars.From there we

> drove to Boston to visit my sister- We stayed

> five

> days, had a great time.My sister and i

> spent one day just habging around downtown and

> also

> went to Salem Mass. where they

> had the witch trials.Aftr we left boston we went

> to

> New hampshire for six days to my

> mothers farm. my mom owns 225 acres o land on the

>

> top

> of this montian in the small

> town of Madison NH, After that my mom flew home

> to

> eattle and i went to visit some

> friends in New Jersey. We spent one day in NNew

> York

> City then I took the train bback to

> Seattle- It was a great trip but it wore me out

> glad

> to be back to Seattle. Matt

>

>

>

>

> __________________________________

> Yahoo! FareChase: Search multiple travel sites in

> one click.

> http://farechase.yahoo.com

>

__________________________________

Yahoo! Mail - PC Magazine Editors' Choice 2005

http://mail.yahoo.com

[Guest guest]

, sounds like you made the right decision to go, even if you have to pay the price now. You'll remember the highlights better than the lows (probably because there are so fewer highlights!) Good for you & I'll bet you looked nice too. You'll have to post a picture so we can see how pretty you are.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: "neurosarcoidosis " <neurosarcoidosis >Subject: (unknown)Date: Wed, 26 Oct 2005 02:17:53 -0700 (PDT)

Hi there! I went to the wedding and had a good time. Despite a road detour and getting lost we got to the church with 10 minutes to spare. The last couple of days I have been recuperating. To my surprise my husband had even danced 4 or 5 dances with me. Of course that was after the couple of beers and dinner champagne he had. I told him he should have a beer or two cuz he is usually such a stick in the mud. Everybody was so surprised to see us both out on the dancefloor. All seven of my older brothers were there...all with their wives except the brother who is getting divorced. My sister and her husband had stayed home sick. My mom made us all stand up against a wall and have our picture taken together. Oh, that was fun... It's like I am on a high while I am at the event but now that I'm home again I feel worse than before I left. It usually takes me a good week to get back to normal. I even suffer from mild depression for a few days. But I had a really good time at the wedding...better than in a long time. I think my diet changes have helped, too. I have been watching my carbs and calories. Keeping my carbs to about 150 a day and my calories to about 1500-1600. And i have spaced my carbs and calories out throughout the day to keep a more balanced blood sugar. I have had more energy and it really showed this weekend. I have also lost 10 pounds in the last 10 days. I went to the grocery store last week and spent an hour looking for all the right foods to eat. That is more time than I have spent in a grocery store in the last 5 years combined cuz my husband usually went. I bought alot of the Smart Ones frozen dinners for myself for when noone else is home so I don't eat junk food. Well, that's it for now. I hope i was coherent cuz I'm still feeling tired and fuzzy in the brain after having to sleep with my husband in the same hotel room. Hardly slept at all. Talk about snoring!!! We sleep in separate rooms at home and I use a sound machine to further drown him out. Last night I slept 12 hours...I think I was catching up on sleep. hugs and hope everyone is weller S.

Yahoo! FareChase - Search multiple travel sites in one click. ~~~~ *** ~~~ *** ~~~ *** ~~~~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

[Guest guest]

, sounds like you made the right decision to go, even if you have to pay the price now. You'll remember the highlights better than the lows (probably because there are so fewer highlights!) Good for you & I'll bet you looked nice too. You'll have to post a picture so we can see how pretty you are.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: "neurosarcoidosis " <neurosarcoidosis >Subject: (unknown)Date: Wed, 26 Oct 2005 02:17:53 -0700 (PDT)

Hi there! I went to the wedding and had a good time. Despite a road detour and getting lost we got to the church with 10 minutes to spare. The last couple of days I have been recuperating. To my surprise my husband had even danced 4 or 5 dances with me. Of course that was after the couple of beers and dinner champagne he had. I told him he should have a beer or two cuz he is usually such a stick in the mud. Everybody was so surprised to see us both out on the dancefloor. All seven of my older brothers were there...all with their wives except the brother who is getting divorced. My sister and her husband had stayed home sick. My mom made us all stand up against a wall and have our picture taken together. Oh, that was fun... It's like I am on a high while I am at the event but now that I'm home again I feel worse than before I left. It usually takes me a good week to get back to normal. I even suffer from mild depression for a few days. But I had a really good time at the wedding...better than in a long time. I think my diet changes have helped, too. I have been watching my carbs and calories. Keeping my carbs to about 150 a day and my calories to about 1500-1600. And i have spaced my carbs and calories out throughout the day to keep a more balanced blood sugar. I have had more energy and it really showed this weekend. I have also lost 10 pounds in the last 10 days. I went to the grocery store last week and spent an hour looking for all the right foods to eat. That is more time than I have spent in a grocery store in the last 5 years combined cuz my husband usually went. I bought alot of the Smart Ones frozen dinners for myself for when noone else is home so I don't eat junk food. Well, that's it for now. I hope i was coherent cuz I'm still feeling tired and fuzzy in the brain after having to sleep with my husband in the same hotel room. Hardly slept at all. Talk about snoring!!! We sleep in separate rooms at home and I use a sound machine to further drown him out. Last night I slept 12 hours...I think I was catching up on sleep. hugs and hope everyone is weller S.

Yahoo! FareChase - Search multiple travel sites in one click. ~~~~ *** ~~~ *** ~~~ *** ~~~~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

[Guest guest]

--- Cohen belltown_mac@...> wrote:

>

>

> --- Debbie rozebudz36@...> wrote:

>

> > Hi Matt,

> > SOunds like you had a good trip. I

> live in

> > southeastern NH. About halfway in between

> Boston

> > and Madison ,NH. It is nice up there in NH,

> > isn't it? That's a lot of land and on

> mountain,

> > too. It must be really beautiful this time

> of

> > year with the foliage and all. THat

> surprised

> > me. I didn't know that you had family so

> close.

> > Salem MA is about 45 mins away from us too.

> We

> > went there on school trips to see where the

> > famous witch trials were.

> > Well, I am glad you had a good time even

> though

> > it wore you out.

> > GOod luck with the procedure on your eyes.

> And

> > also on your Disability claim. I hope

> everything

> > works out for you. Luv, Debbie

> >

> > Hi Debbie-Thanks for the nice message- Where

> in N.H.

> do u live-It really was pretty up there- I go

> to my

> moms farm about every other year-I really like

> New

> England-almost moved to Boston but didnt know

> if i

> could deal with the cold winters-Take care-

> Matt

> >-

> >

> >

> >

> >

> > Reply-To: Neurosarcoidosis

> > To: Neurosarcoidosis

> > Subject: matt in seattle

> > Date: Fri, 21 Oct 2005 23:02:52 -0000

> >

> > Had an eye doctor appt.yesterday, have to

> have

> > surgery

> > next thursday for Glacoma. Eye

> > presssure was way up again. Met with my

> lawyer

> > today

> > to discuss my upcoming disabiliby

> > hearing-He feels we have a strong case but

> told

> > me

> > that the Judge aassiged to my cae was

> > a tough one who turned down a lot of requests

> for

> > disaility- Told me he also gets

> > overruled alot of the time

> > little more about my trip- First,Mom and i

> drove

> > from

> > Seattle to Chicago. we went through

> > Idaho, Montana, N, Dakota Minnisota and

> Wiconsin,

> >

> > We

> > spent three days in Chicago, with

> > my mom showing where we used to live when i

> was a

> > little boy. We also toke a boat trip

> > along the Chicago river to look at the

> downtown

> > area-

> > Really liked Chicago. Our next stop

> > was Cleveland, Again mom took me to were we

> lived

> >

> > when

> > I was between the ages of 5 to

> > nine. We also went downtown and i saw the

> rock

> > and

> > roll museum. From there we went to

> > Pittsburgh to visit friends and i saw a great

>

> > museum

> > dedicated to old cars.From there we

> > drove to Boston to visit my sister- We stayed

>

> > five

> > days, had a great time.My sister and i

> > spent one day just habging around downtown

> and

> > also

> > went to Salem Mass. where they

> > had the witch trials.Aftr we left boston we

> went

> > to

> > New hampshire for six days to my

> > mothers farm. my mom owns 225 acres o land on

> the

> >

> > top

> > of this montian in the small

> > town of Madison NH, After that my mom flew

> home

> > to

> > eattle and i went to visit some

> > friends in New Jersey. We spent one day in

> NNew

> > York

> > City then I took the train bback to

> > Seattle- It was a great trip but it wore me

> out

> > glad

> > to be back to Seattle. Matt

Hi Matt,

I live in Newton, NH right near the the

seacoast but an hour away from Boston and 2 hrs

away from the White Mountains in NH. So we are

kind of centrally located between the beach, the

city and the mountains. I grew up here and I

like it.

Yes, the winters do get rough here sometimes.

But the summers are nice and the autumns are nice

with the foliage and all.

Debbie

> >

> >

> >

> >

> > __________________________________

> > Yahoo! FareChase: Search multiple travel

> sites in

> > one click.

> > http://farechase.yahoo.com

> >

>

>

>

>

>

> __________________________________

> Yahoo! Mail - PC Magazine Editors' Choice 2005

> http://mail.yahoo.com

>

>

>

[Guest guest]

--- Cohen belltown_mac@...> wrote:

>

>

> --- Debbie rozebudz36@...> wrote:

>

> > Hi Matt,

> > SOunds like you had a good trip. I

> live in

> > southeastern NH. About halfway in between

> Boston

> > and Madison ,NH. It is nice up there in NH,

> > isn't it? That's a lot of land and on

> mountain,

> > too. It must be really beautiful this time

> of

> > year with the foliage and all. THat

> surprised

> > me. I didn't know that you had family so

> close.

> > Salem MA is about 45 mins away from us too.

> We

> > went there on school trips to see where the

> > famous witch trials were.

> > Well, I am glad you had a good time even

> though

> > it wore you out.

> > GOod luck with the procedure on your eyes.

> And

> > also on your Disability claim. I hope

> everything

> > works out for you. Luv, Debbie

> >

> > Hi Debbie-Thanks for the nice message- Where

> in N.H.

> do u live-It really was pretty up there- I go

> to my

> moms farm about every other year-I really like

> New

> England-almost moved to Boston but didnt know

> if i

> could deal with the cold winters-Take care-

> Matt

> >-

> >

> >

> >

> >

> > Reply-To: Neurosarcoidosis

> > To: Neurosarcoidosis

> > Subject: matt in seattle

> > Date: Fri, 21 Oct 2005 23:02:52 -0000

> >

> > Had an eye doctor appt.yesterday, have to

> have

> > surgery

> > next thursday for Glacoma. Eye

> > presssure was way up again. Met with my

> lawyer

> > today

> > to discuss my upcoming disabiliby

> > hearing-He feels we have a strong case but

> told

> > me

> > that the Judge aassiged to my cae was

> > a tough one who turned down a lot of requests

> for

> > disaility- Told me he also gets

> > overruled alot of the time

> > little more about my trip- First,Mom and i

> drove

> > from

> > Seattle to Chicago. we went through

> > Idaho, Montana, N, Dakota Minnisota and

> Wiconsin,

> >

> > We

> > spent three days in Chicago, with

> > my mom showing where we used to live when i

> was a

> > little boy. We also toke a boat trip

> > along the Chicago river to look at the

> downtown

> > area-

> > Really liked Chicago. Our next stop

> > was Cleveland, Again mom took me to were we

> lived

> >

> > when

> > I was between the ages of 5 to

> > nine. We also went downtown and i saw the

> rock

> > and

> > roll museum. From there we went to

> > Pittsburgh to visit friends and i saw a great

>

> > museum

> > dedicated to old cars.From there we

> > drove to Boston to visit my sister- We stayed

>

> > five

> > days, had a great time.My sister and i

> > spent one day just habging around downtown

> and

> > also

> > went to Salem Mass. where they

> > had the witch trials.Aftr we left boston we

> went

> > to

> > New hampshire for six days to my

> > mothers farm. my mom owns 225 acres o land on

> the

> >

> > top

> > of this montian in the small

> > town of Madison NH, After that my mom flew

> home

> > to

> > eattle and i went to visit some

> > friends in New Jersey. We spent one day in

> NNew

> > York

> > City then I took the train bback to

> > Seattle- It was a great trip but it wore me

> out

> > glad

> > to be back to Seattle. Matt

Hi Matt,

I live in Newton, NH right near the the

seacoast but an hour away from Boston and 2 hrs

away from the White Mountains in NH. So we are

kind of centrally located between the beach, the

city and the mountains. I grew up here and I

like it.

Yes, the winters do get rough here sometimes.

But the summers are nice and the autumns are nice

with the foliage and all.

Debbie

> >

> >

> >

> >

> > __________________________________

> > Yahoo! FareChase: Search multiple travel

> sites in

> > one click.

> > http://farechase.yahoo.com

> >

>

>

>

>

>

> __________________________________

> Yahoo! Mail - PC Magazine Editors' Choice 2005

> http://mail.yahoo.com

>

>

>

[Guest guest]

Quint, I keep telling her, and telling her. . . . .

Ramblin' Rose

Moderator

From: sarcdogg@...Reply-To: Neurosarcoidosis To: NEUROSARCOIDOSIS (AT) YAHOOGROUPS (DOT) COMSubject: (unknown)Date: Tue, 08 Nov 2005 11:48:22 -0500 ELODIA DEAR IF YOU HAD BEEN EATING YOUR GRITS YOU WOULD'NT HAVE A PROBLEM WITH THE REMICADE.....LOL...GOOD TO HEAR FROM YOU.......QUINT~~~~ *** ~~~ *** ~~~ *** ~~~~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

[Guest guest]

wrote:

I have tried LDN, but only for a couple of weeks,

twice...each time I tried I got the start of a flare. Coincidence,

perhaps, but I am a little afraid to try it again. I have the

prescription. My understanding is that it may take a couple of months

to start working - is that right? I have been on Prednisone at a

higher dosage...I am tapering right now from a 40 mg dose and was on a

60 mg taper last year. Yesterday I had stomache paisn - I was

thinking, "oh no - now whats wrong?" Is the disease progressing even

more now? Into my upper intestine? Do others get stomache gurgles and

pains when they only have UC or is that a sure sign of

chrones/colitis? Today was more successful than yesterday - I had five

visits to the loo with D and B...today, only two small ones but D and B

in both...no stomach pains - I am hoping I just ate something that was

too advanced for me and I am having a mild falre. As far as

elimination - I really don't eat much to begine with...I eat beef

patties, buffalo, dry white fish grilled mahi mahi and alittle

steelhead) and pecorino romano cheese and weakened coffee, well cooked

zuchinni and well good grean beans and salt..all of which seemed to be

tolerated today pretty well as I saw a reduction in the bms...perhaps

regualr beef or the dubliner cheddar causes probelms? I also eat

occasionally bacon and bananna...but perhaps I will stick with what I

ate today for the next few days and see where that gets me. I had some

bok choy in a stir fry and a little too much wine over the weekend

last weekend and that is when things started - oh please oh please just

be a temporary thing - I want to get off this Prednisone soooo bad and

be doing better again. I miss raw fruit and vegetables

aiazeen

UC 6 yrs

Prednisone 5 mg (trying to hold steady - send good thoughts this way)

Imipramine 20 mg, Asacol 800 mg 3x/day

Canasa suppository 1/day for last two days

Many people feel effects from LDN almost immediately, and I did too

(Crohn's, nearly 30 years; asthma, rheumatoid arthritis, mitochondrial

dysfunction causing muscle fatigue). The most amazing result was a

reduction of my long-term dibilitating fatigue within five days, and

then it's vritual disappearance. My muscle problem is also much

improved, as are my asthma (now using my inhaler half as often) and

allergies.

However, there is an adjustment period for some people, and it shows

itself in different ways. The adjustment can be unpleasant -- as can

the initial adjustment to the SCD! But if you stick with it, despite

that, I can't imagine that you'd regret it. I went through a long

period of being awake for two or three hours a night because of the

LDN, but over time that subsided; and when you do sleep, you sleep much

more deeply.

Personally, I've had very bad experiences with Crohn's drugs, and one

can't keep taking prednisone without serious long-term side-effects.

I'm on no drugs except LDN (and my asthma inhaler), plus the SCD, and I

feel like a dfferent person.

I would urge you to grit your teeth and try the LDN again and stay on

it, no matter the initial effects. There's an LDN list that you might

want to join where any questions you have can be answered, and where

people with all kinds of auto-immune diseases and MS, etc., have a lot

of experience with it. See: http://health.groups.yahoo.com/group/lowdosenaltrexone/

n

[Guest guest]

,What formulation did you get? Pills or cream? And what formula did youuse to get them compounded? Mara wrote:I have tried LDN, but only for a couple of weeks, twice...each time I tried I got the start of a flare. Coincidence, perhaps, but I am a little afraid to try it again. I have the prescription. My understanding is that it may take a couple of months to start working - is that right? I have been on Prednisone at a higher dosage...I am tapering right now from a 40 mg dose and was on a 60 mg taper last year. Yesterday I had stomache paisn - I was thinking, "oh no - now whats wrong?" Is the disease progressing even more now? Into my upper intestine? Do others get stomache gurgles and pains when they only have UC or is that a sure sign of chrones/colitis? Today was more successful than yesterday - I had five visits to the loo with D and B...today, only two small ones but D and B in both...no stomach pains - I am hoping I just ate something that was too advanced for me and I am having a mild falre. As far as elimination - I really don't eat much to begine with...I eat beef patties, buffalo, dry white fish grilled mahi mahi and alittle steelhead) and pecorino romano cheese and weakened coffee, well cooked zuchinni and well good grean beans and salt..all of which seemed to be tolerated today pretty well as I saw a reduction in the bms...perhaps regualr beef or the dubliner cheddar causes probelms? I also eat occasionally bacon and bananna...but perhaps I will stick with what I ate today for the next few days and see where that gets me. I had some bok choy in a stir fry and a little too much wine over the weekend last weekend and that is when things started - oh please oh please just be a temporary thing - I want to get off this Prednisone soooo bad and be doing better again. I miss raw fruit and vegetables