Are certain climates better/worse for people with neurosarcoidosis ?

[Guest guest]

Rick, I just want to mention that it appears a person would have a predisposition to this disease then some kind of exposure to trigger it to become active in our systems, not something you get from lets say another person, it is not contagious, but it could very well be a chemical that you were exposed to that caused the sarcoid to " come out " , I myself wonder if it is not genetic, I, my mother, here two cousins, and possibly an Aunt of mine all have it, my Mom does not appear to have trouble at this point, and I pray she does not ever.

but then again who really know for sure, that was just my 5 cents, Marla

Tracie, No need to ever apologize for anything here, you've helped so many people with your knowledge. I think one of the symptoms of NS is acting pissy now and then...and with what we are going through we are allowed to.

Getting back to locations. Everyone's situation is different, for me when my NS acts up I can't get warm enough, even during summer. Cold rainy weather is a killer, my knees want to lock up. I can tell two days in advance when it's going to rain by the amount of pain I'm in.

My turn to get pissy...I'm so mad that I got this. I think I got it at work. I work in a biology department that is doing studies on immune diseases along with AIDS and cancer. I was very run down and under stress and all of a sudden I wound up in the hospital. I read about all the people who have it worse than me, it's all so unfair.

God bless you Tracie. Ricktracie feldhaus wrote:

Rick,You know it's interesting, I can't handle real colddry air-- but the heat of desert states would totallydo me in-- my body can no longer control body

temperature-- so I've adapted by using a " coolingvest " when temps hit 80+. as far as stats-- we don't do anything in that way--we're here to teach coping skills, and share whatworks for us, and what is new to sarc research.

We have 2 owners, Darlene and myself, and 4moderators-- Rose,

, Debbie, Kim. Kim has been too sick for the last several years tohelp-- so we're down 1. Then Rose is having familyhealth issues with her daughter (Jennie just hadpancreatic sx yesterday) and her mom has Alzheimers.

So she's not available right now. Debbie is seriously ill- so not available-3. is also very very ill, and I don't know how she'sholding up--between vertigo, blurred vision,dizziness, and progressive sarc with idiot docs

treating her-- she's trying to be here as she can- andI know she needs to not have to be counted on.Darlene is not only fighting her own battle with sarc,but also takes care of her premie granddaughter-- and

that is enough to drain anyone when healthy.So--it really is just and I right now-- and Itoo am fighting my own battle. So--statistically, it's not gonna happen. However, if you are a stats person-- FSR Foundation

for sarcoidosis research-- may

have those kind ofanswers.Also, there was a study done just a couple of yearsback-- the ACCESS study- that did do alot ofstatistical stuff. Anyway I don't mean to sound pissy, and I'm sure I

am-- so I apologize, send me a rope I can put aroundmy neck please...Hugs,TracieNS Coowner/moderator--- Rick Jack wrote:

> Hi,> I've spoken to several doctors about this and> they all agree that a warm dry climate like the> south west is best. High humidity is the worst thing> for NS and problems from sunlight are more related

> to the meds your on than the NS.> We should have from stats from this group, where> are most of the NS members from?> regards,> Rick> > Connie Griffis wrote:

> I have

so much trouble with the sun> especially and the> heat that my son teases me about my vampiric ways. I> live in FL and during the warm sunny days it is a> nightmare. If I stay out in it any time at all I

> start going down like a rock, if I stay out too long> I> have to lay down. I did better when I lives in north> central georgia, the weather there worked better for> me. Connie> --- Marla Bramer wrote:

> > > I find everyone is different, the cold just kills> > me, I hurt so bad when> > it's cold, and in the summer I just stay out of> the> > heat and the sun, we> > don't get very hot for very long here, but the

> > winters can be brutal, I live> > in Colorado. I like the heat, but I don't feel> good> > if I'm out in it for> >

very long, if i am in the shade I do OK a little> > longer, so are you in> > Casper? I live in Northern Colorado a little town> > called Windsor. Marla> > > > On Feb 17, 2008 7:24 PM, Kendra H

> > wrote:> > > > > Where at in Wyoming? My husband and I just moved> > from there to Ft.

> > > KY. He lived there his whole life and I> > went to Casper College. We> > > met after high school. I have lived there for> the> > last 5 years. Its not a> > > great climate. It always made me feel worse when

> > the heat got to high. This> > > spring my husband is going to Iraq and I am> going> > back to Alaska to hang out> > > with my family for a few months. If the climate

> > there

treats me better then> > > I am staying. I was actually thinking the cooler> > the climate the> > > better....... Except all the neuro-sarc> specialist> > that I have met are in

> > > Houston TX....> > >> > > Maybe I will ask them?!> > > *debbie62062 * wrote:

> > >> > > I am living in Wyoming and feel the climate and> > altitude are getting> > > the best of me. I have been considering moving> to> > the Pheonix area but

> > > I am worried about the heat. I would also like> to> > move to an area> > > where the Drs do not seem afraid to try to treat> > me.> > >> > >

> > > ------------------------------> > > Looking

for last minute shopping deals? Find> them> > fast with Yahoo!> >>Search.<http://us.rd.yahoo.com/evt=51734/*http://tools.search.yahoo.com/newsearch/category.php?category=shopping>

> > > > > >> > > > > > > > -- > > Marla Bramer> > Independent Beauty Consultant> > Kay> > > > mbramer@...

> > www.marykay.com/mbramer> > > >__________________________________________________________> OMG, Sweet deal for Yahoo! users/friends:Get A Month

> of Blockbuster Total Access, No Cost. W00t > http://tc.deals.yahoo.com/tc/blockbuster/text2.com> > > >

> > ---------------------------------> Like movies? Here's a limited-time offer:> Blockbuster Total Access for one month at no cost. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

Rick, I just want to mention that it appears a person would have a predisposition to this disease then some kind of exposure to trigger it to become active in our systems, not something you get from lets say another person, it is not contagious, but it could very well be a chemical that you were exposed to that caused the sarcoid to " come out " , I myself wonder if it is not genetic, I, my mother, here two cousins, and possibly an Aunt of mine all have it, my Mom does not appear to have trouble at this point, and I pray she does not ever.

but then again who really know for sure, that was just my 5 cents, Marla

Tracie, No need to ever apologize for anything here, you've helped so many people with your knowledge. I think one of the symptoms of NS is acting pissy now and then...and with what we are going through we are allowed to.

Getting back to locations. Everyone's situation is different, for me when my NS acts up I can't get warm enough, even during summer. Cold rainy weather is a killer, my knees want to lock up. I can tell two days in advance when it's going to rain by the amount of pain I'm in.

My turn to get pissy...I'm so mad that I got this. I think I got it at work. I work in a biology department that is doing studies on immune diseases along with AIDS and cancer. I was very run down and under stress and all of a sudden I wound up in the hospital. I read about all the people who have it worse than me, it's all so unfair.

God bless you Tracie. Ricktracie feldhaus wrote:

Rick,You know it's interesting, I can't handle real colddry air-- but the heat of desert states would totallydo me in-- my body can no longer control body

temperature-- so I've adapted by using a " coolingvest " when temps hit 80+. as far as stats-- we don't do anything in that way--we're here to teach coping skills, and share whatworks for us, and what is new to sarc research.

We have 2 owners, Darlene and myself, and 4moderators-- Rose,

, Debbie, Kim. Kim has been too sick for the last several years tohelp-- so we're down 1. Then Rose is having familyhealth issues with her daughter (Jennie just hadpancreatic sx yesterday) and her mom has Alzheimers.

So she's not available right now. Debbie is seriously ill- so not available-3. is also very very ill, and I don't know how she'sholding up--between vertigo, blurred vision,dizziness, and progressive sarc with idiot docs

treating her-- she's trying to be here as she can- andI know she needs to not have to be counted on.Darlene is not only fighting her own battle with sarc,but also takes care of her premie granddaughter-- and

that is enough to drain anyone when healthy.So--it really is just and I right now-- and Itoo am fighting my own battle. So--statistically, it's not gonna happen. However, if you are a stats person-- FSR Foundation

for sarcoidosis research-- may

have those kind ofanswers.Also, there was a study done just a couple of yearsback-- the ACCESS study- that did do alot ofstatistical stuff. Anyway I don't mean to sound pissy, and I'm sure I

am-- so I apologize, send me a rope I can put aroundmy neck please...Hugs,TracieNS Coowner/moderator--- Rick Jack wrote:

> Hi,> I've spoken to several doctors about this and> they all agree that a warm dry climate like the> south west is best. High humidity is the worst thing> for NS and problems from sunlight are more related

> to the meds your on than the NS.> We should have from stats from this group, where> are most of the NS members from?> regards,> Rick> > Connie Griffis wrote:

> I have

so much trouble with the sun> especially and the> heat that my son teases me about my vampiric ways. I> live in FL and during the warm sunny days it is a> nightmare. If I stay out in it any time at all I

> start going down like a rock, if I stay out too long> I> have to lay down. I did better when I lives in north> central georgia, the weather there worked better for> me. Connie> --- Marla Bramer wrote:

> > > I find everyone is different, the cold just kills> > me, I hurt so bad when> > it's cold, and in the summer I just stay out of> the> > heat and the sun, we> > don't get very hot for very long here, but the

> > winters can be brutal, I live> > in Colorado. I like the heat, but I don't feel> good> > if I'm out in it for> >

very long, if i am in the shade I do OK a little> > longer, so are you in> > Casper? I live in Northern Colorado a little town> > called Windsor. Marla> > > > On Feb 17, 2008 7:24 PM, Kendra H

> > wrote:> > > > > Where at in Wyoming? My husband and I just moved> > from there to Ft.

> > > KY. He lived there his whole life and I> > went to Casper College. We> > > met after high school. I have lived there for> the> > last 5 years. Its not a> > > great climate. It always made me feel worse when

> > the heat got to high. This> > > spring my husband is going to Iraq and I am> going> > back to Alaska to hang out> > > with my family for a few months. If the climate

> > there

treats me better then> > > I am staying. I was actually thinking the cooler> > the climate the> > > better....... Except all the neuro-sarc> specialist> > that I have met are in

> > > Houston TX....> > >> > > Maybe I will ask them?!> > > *debbie62062 * wrote:

> > >> > > I am living in Wyoming and feel the climate and> > altitude are getting> > > the best of me. I have been considering moving> to> > the Pheonix area but

> > > I am worried about the heat. I would also like> to> > move to an area> > > where the Drs do not seem afraid to try to treat> > me.> > >> > >

> > > ------------------------------> > > Looking

for last minute shopping deals? Find> them> > fast with Yahoo!> >>Search.<http://us.rd.yahoo.com/evt=51734/*http://tools.search.yahoo.com/newsearch/category.php?category=shopping>

> > > > > >> > > > > > > > -- > > Marla Bramer> > Independent Beauty Consultant> > Kay> > > > mbramer@...

> > www.marykay.com/mbramer> > > >__________________________________________________________> OMG, Sweet deal for Yahoo! users/friends:Get A Month

> of Blockbuster Total Access, No Cost. W00t > http://tc.deals.yahoo.com/tc/blockbuster/text2.com> > > >

> > ---------------------------------> Like movies? Here's a limited-time offer:> Blockbuster Total Access for one month at no cost. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

Marla, You might be right, I don't know. I came down with it at a time of my life when I was under a lot of stress, and getting very little sleep. My mother had many of the symptoms I have, but I never heard NS mentioned, and so did my grandfather (mothers side). Both have passed. I never heard of NS until I got it. It will remain a mystery. Thanks for your reply. Rick

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[Guest guest]

Marla, You might be right, I don't know. I came down with it at a time of my life when I was under a lot of stress, and getting very little sleep. My mother had many of the symptoms I have, but I never heard NS mentioned, and so did my grandfather (mothers side). Both have passed. I never heard of NS until I got it. It will remain a mystery. Thanks for your reply. Rick

No Cost - Get a month of Blockbuster Total Access now. Sweet deal for Yahoo! users and friends.

[Guest guest]

I'm with you Rick, I get pissy too.

I try to let people know when I am in a bad mood, but sometimes it just slips out.

I will apologize in advance to you guys for my attitude malfunctions. Know that it is the disease and not the real me.

I am so tired of this.

Working in hospitals, around sick and chronically ill people for almost 30years has almost done me in. It leaves nothing, left to fight for yourself. We wear ourselves down, caring so much for others and then, BOOM, we fall apart.

You are right. It is unfair.

Re: Are certain climates better/worse for people with neurosarcoidosis ?

Tracie,

No need to ever apologize for anything here, you've helped so many people with your knowledge.

I think one of the symptoms of NS is acting pissy now and then...and with what we are going through we are allowed to.

Getting back to locations. Everyone's situation is different, for me when my NS acts up I can't get warm enough, even during summer. Cold rainy weather is a killer, my knees want to lock up. I can tell two days in advance when it's going to rain by the amount of pain I'm in.

My turn to get pissy...I'm so mad that I got this. I think I got it at work. I work in a biology department that is doing studies on immune diseases along with AIDS and cancer. I was very run down and under stress and all of a sudden I wound up in the hospital. I read about all the people who have it worse than me, it's all so unfair.

God bless you Tracie.

Ricktracie feldhaus <tiodaat (AT) att (DOT) net> wrote:

Rick,You know it's interesting, I can't handle real colddry air-- but the heat of desert states would totallydo me in-- my body can no longer control bodytemperature- - so I've adapted by using a "coolingvest" when temps hit 80+. as far as stats-- we don't do anything in that way--we're here to teach coping skills, and share whatworks for us, and what is new to sarc research. We have 2 owners, Darlene and myself, and 4moderators-- Rose, , Debbie, Kim. Kim has been too sick for the last several years tohelp-- so we're down 1. Then Rose is having familyhealth issues with her daughter (Jennie just hadpancreatic sx yesterday) and her mom has Alzheimers. So she's not available right now. Debbie is seriously ill- so not available-3. is also very very ill, and I don't know how she'sholding up--between vertigo, blurred vision,dizziness, and progressive sarc with idiot

docstreating her-- she's trying to be here as she can- andI know she needs to not have to be counted on.Darlene is not only fighting her own battle with sarc,but also takes care of her premie granddaughter- - andthat is enough to drain anyone when healthy.So--it really is just and I right now-- and Itoo am fighting my own battle. So--statistically, it's not gonna happen. However, if you are a stats person-- FSR Foundationfor sarcoidosis research-- may have those kind ofanswers.Also, there was a study done just a couple of yearsback-- the ACCESS study- that did do alot ofstatistical stuff. Anyway I don't mean to sound pissy, and I'm sure Iam-- so I apologize, send me a rope I can put aroundmy neck please...Hugs,TracieNS Coowner/moderator--- Rick Jack <jack11973 (AT) yahoo (DOT) com> wrote:> Hi,> I've spoken to several doctors about this and> they all agree that a warm dry climate like the> south west is best. High humidity is the worst thing> for NS and problems from sunlight are more related> to the meds your on than the NS.> We should have from stats from this group, where> are most of the NS members from?> regards,> Rick> > Connie Griffis <conaugusta (AT) yahoo (DOT) com> wrote:> I have so much trouble with the sun> especially and the> heat that my son teases me about my vampiric ways. I> live in FL and during the warm sunny days it is a> nightmare. If I stay out in it any time at all I> start going down like a rock, if I stay

out too long> I> have to lay down. I did better when I lives in north> central georgia, the weather there worked better for> me. Connie> --- Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:> > > I find everyone is different, the cold just kills> > me, I hurt so bad when> > it's cold, and in the summer I just stay out of> the> > heat and the sun, we> > don't get very hot for very long here, but the> > winters can be brutal, I live> > in Colorado. I like the heat, but I don't feel> good> > if I'm out in it for> > very long, if i am in the shade I do OK a little> > longer, so are you in> > Casper? I live in Northern Colorado a little town> > called Windsor. Marla> >

> > On Feb 17, 2008 7:24 PM, Kendra H> > <kluvsrsanda@ yahoo.com> wrote:> > > > > Where at in Wyoming? My husband and I just moved> > from there to Ft.> > > KY. He lived there his whole life and I> > went to Casper College. We> > > met after high school. I have lived there for> the> > last 5 years. Its not a> > > great climate. It always made me feel worse when> > the heat got to high. This> > > spring my husband is going to Iraq and I am> going> > back to Alaska to hang out> > > with my family for a few months. If the climate> > there treats me better then> > > I am staying. I was actually thinking the cooler> > the climate

the> > > better...... . Except all the neuro-sarc> specialist> > that I have met are in> > > Houston TX....> > >> > > Maybe I will ask them?!> > > *debbie62062 <debbie62062@ yahoo.com>* wrote:> > >> > > I am living in Wyoming and feel the climate and> > altitude are getting> > > the best of me. I have been considering moving> to> > the Pheonix area but> > > I am worried about the heat. I would also like> to> > move to an area> > > where the Drs do not seem afraid to try to treat> > me.> > >> > >> > > ------------ --------- ---------> > > Looking for last minute shopping deals?

Find> them> > fast with Yahoo!> >>Search.<http://us.rd. yahoo.com/ evt=51734/ *http://tools. search.yahoo. com/newsearch/ category. php?category= shopping>> > > > > >> > > > > > > > -- > > Marla Bramer> > Independent Beauty Consultant> > Kay> > > > mbramer (AT) marykay (DOT) com> > www.marykay. com/mbramer> > > >____________ _________ _________ _________ _________ _________ _> OMG, Sweet deal for Yahoo! users/friends: Get A Month> of Blockbuster Total Access, No Cost. W00t > http://tc.deals. yahoo.com/ tc/blockbuster/ text2.com> > > > > > ------------ --------- --------- ---> Like movies? Here's a limited-time offer:> Blockbuster Total Access for one month at no cost.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

OMG, Sweet deal for Yahoo! users/friends: Get A Month of Blockbuster Total Access, No Cost. W00t

[Guest guest]

I'm with you Rick, I get pissy too.

I try to let people know when I am in a bad mood, but sometimes it just slips out.

I will apologize in advance to you guys for my attitude malfunctions. Know that it is the disease and not the real me.

I am so tired of this.

Working in hospitals, around sick and chronically ill people for almost 30years has almost done me in. It leaves nothing, left to fight for yourself. We wear ourselves down, caring so much for others and then, BOOM, we fall apart.

You are right. It is unfair.

Re: Are certain climates better/worse for people with neurosarcoidosis ?

Tracie,

No need to ever apologize for anything here, you've helped so many people with your knowledge.

I think one of the symptoms of NS is acting pissy now and then...and with what we are going through we are allowed to.

Getting back to locations. Everyone's situation is different, for me when my NS acts up I can't get warm enough, even during summer. Cold rainy weather is a killer, my knees want to lock up. I can tell two days in advance when it's going to rain by the amount of pain I'm in.

My turn to get pissy...I'm so mad that I got this. I think I got it at work. I work in a biology department that is doing studies on immune diseases along with AIDS and cancer. I was very run down and under stress and all of a sudden I wound up in the hospital. I read about all the people who have it worse than me, it's all so unfair.

God bless you Tracie.

Ricktracie feldhaus <tiodaat (AT) att (DOT) net> wrote:

Rick,You know it's interesting, I can't handle real colddry air-- but the heat of desert states would totallydo me in-- my body can no longer control bodytemperature- - so I've adapted by using a "coolingvest" when temps hit 80+. as far as stats-- we don't do anything in that way--we're here to teach coping skills, and share whatworks for us, and what is new to sarc research. We have 2 owners, Darlene and myself, and 4moderators-- Rose, , Debbie, Kim. Kim has been too sick for the last several years tohelp-- so we're down 1. Then Rose is having familyhealth issues with her daughter (Jennie just hadpancreatic sx yesterday) and her mom has Alzheimers. So she's not available right now. Debbie is seriously ill- so not available-3. is also very very ill, and I don't know how she'sholding up--between vertigo, blurred vision,dizziness, and progressive sarc with idiot

docstreating her-- she's trying to be here as she can- andI know she needs to not have to be counted on.Darlene is not only fighting her own battle with sarc,but also takes care of her premie granddaughter- - andthat is enough to drain anyone when healthy.So--it really is just and I right now-- and Itoo am fighting my own battle. So--statistically, it's not gonna happen. However, if you are a stats person-- FSR Foundationfor sarcoidosis research-- may have those kind ofanswers.Also, there was a study done just a couple of yearsback-- the ACCESS study- that did do alot ofstatistical stuff. Anyway I don't mean to sound pissy, and I'm sure Iam-- so I apologize, send me a rope I can put aroundmy neck please...Hugs,TracieNS Coowner/moderator--- Rick Jack <jack11973 (AT) yahoo (DOT) com> wrote:> Hi,> I've spoken to several doctors about this and> they all agree that a warm dry climate like the> south west is best. High humidity is the worst thing> for NS and problems from sunlight are more related> to the meds your on than the NS.> We should have from stats from this group, where> are most of the NS members from?> regards,> Rick> > Connie Griffis <conaugusta (AT) yahoo (DOT) com> wrote:> I have so much trouble with the sun> especially and the> heat that my son teases me about my vampiric ways. I> live in FL and during the warm sunny days it is a> nightmare. If I stay out in it any time at all I> start going down like a rock, if I stay

out too long> I> have to lay down. I did better when I lives in north> central georgia, the weather there worked better for> me. Connie> --- Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:> > > I find everyone is different, the cold just kills> > me, I hurt so bad when> > it's cold, and in the summer I just stay out of> the> > heat and the sun, we> > don't get very hot for very long here, but the> > winters can be brutal, I live> > in Colorado. I like the heat, but I don't feel> good> > if I'm out in it for> > very long, if i am in the shade I do OK a little> > longer, so are you in> > Casper? I live in Northern Colorado a little town> > called Windsor. Marla> >

> > On Feb 17, 2008 7:24 PM, Kendra H> > <kluvsrsanda@ yahoo.com> wrote:> > > > > Where at in Wyoming? My husband and I just moved> > from there to Ft.> > > KY. He lived there his whole life and I> > went to Casper College. We> > > met after high school. I have lived there for> the> > last 5 years. Its not a> > > great climate. It always made me feel worse when> > the heat got to high. This> > > spring my husband is going to Iraq and I am> going> > back to Alaska to hang out> > > with my family for a few months. If the climate> > there treats me better then> > > I am staying. I was actually thinking the cooler> > the climate

the> > > better...... . Except all the neuro-sarc> specialist> > that I have met are in> > > Houston TX....> > >> > > Maybe I will ask them?!> > > *debbie62062 <debbie62062@ yahoo.com>* wrote:> > >> > > I am living in Wyoming and feel the climate and> > altitude are getting> > > the best of me. I have been considering moving> to> > the Pheonix area but> > > I am worried about the heat. I would also like> to> > move to an area> > > where the Drs do not seem afraid to try to treat> > me.> > >> > >> > > ------------ --------- ---------> > > Looking for last minute shopping deals?

Find> them> > fast with Yahoo!> >>Search.<http://us.rd. yahoo.com/ evt=51734/ *http://tools. search.yahoo. com/newsearch/ category. php?category= shopping>> > > > > >> > > > > > > > -- > > Marla Bramer> > Independent Beauty Consultant> > Kay> > > > mbramer (AT) marykay (DOT) com> > www.marykay. com/mbramer> > > >____________ _________ _________ _________ _________ _________ _> OMG, Sweet deal for Yahoo! users/friends: Get A Month> of Blockbuster Total Access, No Cost. W00t > http://tc.deals. yahoo.com/ tc/blockbuster/ text2.com> > > > > > ------------ --------- --------- ---> Like movies? Here's a limited-time offer:> Blockbuster Total Access for one month at no cost.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

OMG, Sweet deal for Yahoo! users/friends: Get A Month of Blockbuster Total Access, No Cost. W00t

[Guest guest]

Terri, this inability to regulate temp is really interesting to me. My doctor looks at me like I am an idiot when I tell him I can't tolerate extremes in temp. It's weird because I feel really sick, but my body doesn't do the normal things to deal with the extremes. I was outside in near zero weather with my kids while they shoveled. Before NS I would have had tons of clothes on and still been freezing. I had a jacket on and after a while one of my kids suggested I zip it, but I wasn't feeling cold at all. When I went inside and went to the bathroom I saw my legs were deep red and felt very cold to the touch but I didn't feel cold at all. This happened all winter. i don't get goose bumps or shiver any more. I noticed recently that I am not sweating. what causes this and what can we do other than avoid the extreme temps as much as possible. Thanks! Cathymosaicgirl1 wrote: Rick,My biggest heat issue has nothing to do with meds; I have problems withbeing able to regulate my temp. If I get too hot I get sick if I gettoo cold I am miserable. I do have one medicine that can cause problemswith the sun but I don't go in the sun. I can get overheated justsitting next to a lamp.I agree that anywhere with low humidity would probably be good. We havepretty high humidity here in the summer and it is a bummer!Talk to you again soon.Terri> > >> > > I am living in Wyoming and feel the climate and> > altitude are getting> > > the best of me. I have been

considering moving to> > the Pheonix area but> > > I am worried about the heat. I would also like to> > move to an area> > > where the Drs do not seem afraid to try to treat> > me.> > >> > >> > > ------------------------------> > > Looking for last minute shopping deals? Find them> > fast with Yahoo!> >>Search.<http://us.rd.yahoo.com/evt=51734/*http://tools.search.yahoo.com/\newsearch/category.php?category=shopping>> > >> > >> >> >> >> > --> > Marla Bramer> > Independent Beauty Consultant> > Kay> > > > mbramer@...> >

www.marykay.com/mbramer> >>> __________________________________________________________> OMG, Sweet deal for Yahoo! users/friends:Get A Month of BlockbusterTotal Access, No Cost. W00t> http://tc.deals.yahoo.com/tc/blockbuster/text2.com>>>>>> ---------------------------------> Like movies? Here's a limited-time offer: Blockbuster Total Access forone month at no cost.>

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Terri, this inability to regulate temp is really interesting to me. My doctor looks at me like I am an idiot when I tell him I can't tolerate extremes in temp. It's weird because I feel really sick, but my body doesn't do the normal things to deal with the extremes. I was outside in near zero weather with my kids while they shoveled. Before NS I would have had tons of clothes on and still been freezing. I had a jacket on and after a while one of my kids suggested I zip it, but I wasn't feeling cold at all. When I went inside and went to the bathroom I saw my legs were deep red and felt very cold to the touch but I didn't feel cold at all. This happened all winter. i don't get goose bumps or shiver any more. I noticed recently that I am not sweating. what causes this and what can we do other than avoid the extreme temps as much as possible. Thanks! Cathymosaicgirl1 wrote: Rick,My biggest heat issue has nothing to do with meds; I have problems withbeing able to regulate my temp. If I get too hot I get sick if I gettoo cold I am miserable. I do have one medicine that can cause problemswith the sun but I don't go in the sun. I can get overheated justsitting next to a lamp.I agree that anywhere with low humidity would probably be good. We havepretty high humidity here in the summer and it is a bummer!Talk to you again soon.Terri> > >> > > I am living in Wyoming and feel the climate and> > altitude are getting> > > the best of me. I have been

considering moving to> > the Pheonix area but> > > I am worried about the heat. I would also like to> > move to an area> > > where the Drs do not seem afraid to try to treat> > me.> > >> > >> > > ------------------------------> > > Looking for last minute shopping deals? Find them> > fast with Yahoo!> >>Search.<http://us.rd.yahoo.com/evt=51734/*http://tools.search.yahoo.com/\newsearch/category.php?category=shopping>> > >> > >> >> >> >> > --> > Marla Bramer> > Independent Beauty Consultant> > Kay> > > > mbramer@...> >

www.marykay.com/mbramer> >>> __________________________________________________________> OMG, Sweet deal for Yahoo! users/friends:Get A Month of BlockbusterTotal Access, No Cost. W00t> http://tc.deals.yahoo.com/tc/blockbuster/text2.com>>>>>> ---------------------------------> Like movies? Here's a limited-time offer: Blockbuster Total Access forone month at no cost.>

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

Temperature controls seem to go astray when our pituatary, hypothalmus, thyroid, adrenals --all can influence body temperature control. If you have small nerve fibre neuropathy-- you may not feel it on your skin externally, but it's still happening.

If you have peripheral involvement-- then the extremities can easily miss the signals that would normally tell you that you are in trouble.

Be very careful with this- and even if you are not "cold" dress appropriately. I use a "cooling vest" during the summers (over 85 degrees out) because my body can't cool itself. This is like the collars that you find in sporting good stores-- only it's a full upper body vest. I put it in the sink full of cold water, ring it out, put it on-- and I can handle being outside during the summer. You can search by using "cooling vests".

Hope this helps,

TRACIE

Re: Re: Are certain climates better/worse for people with neurosarcoidosis ?

Terri,

this inability to regulate temp is really interesting to me. My doctor looks at me like I am an idiot when I tell him I can't tolerate extremes in temp. It's weird because I feel really sick, but my body doesn't do the normal things to deal with the extremes. I was outside in near zero weather with my kids while they shoveled. Before NS I would have had tons of clothes on and still been freezing. I had a jacket on and after a while one of my kids suggested I zip it, but I wasn't feeling cold at all. When I went inside and went to the bathroom I saw my legs were deep red and felt very cold to the touch but I didn't feel cold at all. This happened all winter. i don't get goose bumps or shiver any more. I noticed recently that I am not sweating. what causes this and what can we do other than avoid the extreme temps as much as possible.

Thanks!

Cathymosaicgirl1 wrote:

Rick,My biggest heat issue has nothing to do with meds; I have problems withbeing able to regulate my temp. If I get too hot I get sick if I gettoo cold I am miserable. I do have one medicine that can cause problemswith the sun but I don't go in the sun. I can get overheated justsitting next to a lamp.I agree that anywhere with low humidity would probably be good. We havepretty high humidity here in the summer and it is a bummer!Talk to you again soon.Terri> > >> > > I am living in Wyoming and feel the climate and> > altitude are getting> > > the best of me. I have been considering moving to> > the Pheonix area but> > > I am worried about the heat. I would also like to> > move to an area> > > where the Drs do not seem afraid to try to treat> > me.> > >> > >> > > ------------ ---------

---------> > > Looking for last minute shopping deals? Find them> > fast with Yahoo!> >>Search.<http://us.rd. yahoo.com/ evt=51734/ *http://tools. search.yahoo. com/\newsearch/category. php?category= shopping>> > >> > >> >> >> >> > --> > Marla Bramer> > Independent Beauty Consultant> > Kay> > > > mbramer@...> > www.marykay. com/mbramer> >>> ____________ _________ _________ _________ _________ _________ _> OMG, Sweet deal for Yahoo! users/friends: Get A Month of BlockbusterTotal Access, No Cost. W00t> http://tc.deals. yahoo.com/ tc/blockbuster/ text2.com>>>>>> ------------ --------- --------- ---> Like movies? Here's a limited-time offer: Blockbuster Total Access forone month at no cost.>

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

Temperature controls seem to go astray when our pituatary, hypothalmus, thyroid, adrenals --all can influence body temperature control. If you have small nerve fibre neuropathy-- you may not feel it on your skin externally, but it's still happening.

If you have peripheral involvement-- then the extremities can easily miss the signals that would normally tell you that you are in trouble.

Be very careful with this- and even if you are not "cold" dress appropriately. I use a "cooling vest" during the summers (over 85 degrees out) because my body can't cool itself. This is like the collars that you find in sporting good stores-- only it's a full upper body vest. I put it in the sink full of cold water, ring it out, put it on-- and I can handle being outside during the summer. You can search by using "cooling vests".

Hope this helps,

TRACIE

Re: Re: Are certain climates better/worse for people with neurosarcoidosis ?

Terri,

this inability to regulate temp is really interesting to me. My doctor looks at me like I am an idiot when I tell him I can't tolerate extremes in temp. It's weird because I feel really sick, but my body doesn't do the normal things to deal with the extremes. I was outside in near zero weather with my kids while they shoveled. Before NS I would have had tons of clothes on and still been freezing. I had a jacket on and after a while one of my kids suggested I zip it, but I wasn't feeling cold at all. When I went inside and went to the bathroom I saw my legs were deep red and felt very cold to the touch but I didn't feel cold at all. This happened all winter. i don't get goose bumps or shiver any more. I noticed recently that I am not sweating. what causes this and what can we do other than avoid the extreme temps as much as possible.

Thanks!

Cathymosaicgirl1 wrote:

Rick,My biggest heat issue has nothing to do with meds; I have problems withbeing able to regulate my temp. If I get too hot I get sick if I gettoo cold I am miserable. I do have one medicine that can cause problemswith the sun but I don't go in the sun. I can get overheated justsitting next to a lamp.I agree that anywhere with low humidity would probably be good. We havepretty high humidity here in the summer and it is a bummer!Talk to you again soon.Terri> > >> > > I am living in Wyoming and feel the climate and> > altitude are getting> > > the best of me. I have been considering moving to> > the Pheonix area but> > > I am worried about the heat. I would also like to> > move to an area> > > where the Drs do not seem afraid to try to treat> > me.> > >> > >> > > ------------ ---------

---------> > > Looking for last minute shopping deals? Find them> > fast with Yahoo!> >>Search.<http://us.rd. yahoo.com/ evt=51734/ *http://tools. search.yahoo. com/\newsearch/category. php?category= shopping>> > >> > >> >> >> >> > --> > Marla Bramer> > Independent Beauty Consultant> > Kay> > > > mbramer@...> > www.marykay. com/mbramer> >>> ____________ _________ _________ _________ _________ _________ _> OMG, Sweet deal for Yahoo! users/friends: Get A Month of BlockbusterTotal Access, No Cost. W00t> http://tc.deals. yahoo.com/ tc/blockbuster/ text2.com>>>>>> ------------ --------- --------- ---> Like movies? Here's a limited-time offer: Blockbuster Total Access forone month at no cost.>

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

Yes, I do have peripheral neuropathy so I try to remember to dress approapriately, but it is taking some getting used to--something I used to not have to think about, now I need to do consciously. Not quite fair when my mind isn't working so good either. Oh well. Thanks for the info. Cathytracie feldhaus wrote: Temperature controls seem to go astray when our pituatary, hypothalmus, thyroid, adrenals

--all can influence body temperature control. If you have small nerve fibre neuropathy-- you may not feel it on your skin externally, but it's still happening. If you have peripheral involvement-- then the extremities can easily miss the signals that would normally tell you that you are in trouble. Be very careful with this- and even if you are not "cold" dress appropriately. I use a "cooling vest" during the summers (over 85 degrees out) because my body can't cool itself. This is like the collars that you find in sporting good stores-- only it's a full upper body vest. I put it in the sink full of cold water, ring it out, put it on-- and I can handle being outside during the summer. You can search by using "cooling vests". Hope this helps, TRACIE Re: Re: Are certain climates better/worse for people with neurosarcoidosis ? Terri, this inability to regulate temp is really interesting to me. My doctor looks at me like I am an idiot when I tell him I can't tolerate extremes in temp. It's weird because I feel really sick, but my body doesn't do the normal things to deal with the extremes. I was outside in near zero weather with my kids while they shoveled. Before NS I would have had tons of clothes on and still been freezing. I had a jacket on and after a while one of my kids suggested I zip it, but I wasn't feeling cold at all. When I went inside and went to the bathroom I saw my legs

were deep red and felt very cold to the touch but I didn't feel cold at all. This happened all winter. i don't get goose bumps or shiver any more. I noticed recently that I am not sweating. what causes this and what can we do other than avoid the extreme temps as much as possible. Thanks! Cathymosaicgirl1 <mosaicgirl1 (AT) yahoo (DOT) com> wrote: Rick,My biggest heat issue has nothing to do with meds; I have problems withbeing able to regulate my temp. If I get too hot I get sick if I gettoo cold I am miserable. I do have one medicine that can cause problemswith the sun but I don't go in the sun. I can get overheated justsitting next to a lamp.I agree that anywhere with low humidity would probably be good. We havepretty high humidity here in the summer and it is a bummer!Talk to you

again soon.Terri> > >> > > I am living in Wyoming and feel the climate

and> > altitude are getting> > > the best of me. I have been considering moving to> > the Pheonix area but> > > I am worried about the heat. I would also like to> > move to an area> > > where the Drs do not seem afraid to try to treat> > me.> > >> > >> > > ------------ --------- ---------> > > Looking for last minute shopping deals? Find them> > fast with Yahoo!> >>Search.<http://us.rd. yahoo.com/ evt=51734/ *http://tools. search.yahoo. com/\newsearch/category. php?category= shopping>> > >> > >> >> >> >> > --> > Marla Bramer> > Independent Beauty Consultant> >

Kay> > > > mbramer@...> > www.marykay. com/mbramer> >>> ____________ _________ _________ _________ _________ _________ _> OMG, Sweet deal for Yahoo! users/friends: Get A Month of BlockbusterTotal Access, No Cost. W00t> http://tc.deals. yahoo.com/ tc/blockbuster/ text2.com>>>>>> ------------ --------- --------- ---> Like movies? Here's a limited-time offer: Blockbuster Total Access forone month at no cost.> You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Yes, I do have peripheral neuropathy so I try to remember to dress approapriately, but it is taking some getting used to--something I used to not have to think about, now I need to do consciously. Not quite fair when my mind isn't working so good either. Oh well. Thanks for the info. Cathytracie feldhaus wrote: Temperature controls seem to go astray when our pituatary, hypothalmus, thyroid, adrenals

--all can influence body temperature control. If you have small nerve fibre neuropathy-- you may not feel it on your skin externally, but it's still happening. If you have peripheral involvement-- then the extremities can easily miss the signals that would normally tell you that you are in trouble. Be very careful with this- and even if you are not "cold" dress appropriately. I use a "cooling vest" during the summers (over 85 degrees out) because my body can't cool itself. This is like the collars that you find in sporting good stores-- only it's a full upper body vest. I put it in the sink full of cold water, ring it out, put it on-- and I can handle being outside during the summer. You can search by using "cooling vests". Hope this helps, TRACIE Re: Re: Are certain climates better/worse for people with neurosarcoidosis ? Terri, this inability to regulate temp is really interesting to me. My doctor looks at me like I am an idiot when I tell him I can't tolerate extremes in temp. It's weird because I feel really sick, but my body doesn't do the normal things to deal with the extremes. I was outside in near zero weather with my kids while they shoveled. Before NS I would have had tons of clothes on and still been freezing. I had a jacket on and after a while one of my kids suggested I zip it, but I wasn't feeling cold at all. When I went inside and went to the bathroom I saw my legs

were deep red and felt very cold to the touch but I didn't feel cold at all. This happened all winter. i don't get goose bumps or shiver any more. I noticed recently that I am not sweating. what causes this and what can we do other than avoid the extreme temps as much as possible. Thanks! Cathymosaicgirl1 <mosaicgirl1 (AT) yahoo (DOT) com> wrote: Rick,My biggest heat issue has nothing to do with meds; I have problems withbeing able to regulate my temp. If I get too hot I get sick if I gettoo cold I am miserable. I do have one medicine that can cause problemswith the sun but I don't go in the sun. I can get overheated justsitting next to a lamp.I agree that anywhere with low humidity would probably be good. We havepretty high humidity here in the summer and it is a bummer!Talk to you

again soon.Terri> > >> > > I am living in Wyoming and feel the climate

and> > altitude are getting> > > the best of me. I have been considering moving to> > the Pheonix area but> > > I am worried about the heat. I would also like to> > move to an area> > > where the Drs do not seem afraid to try to treat> > me.> > >> > >> > > ------------ --------- ---------> > > Looking for last minute shopping deals? Find them> > fast with Yahoo!> >>Search.<http://us.rd. yahoo.com/ evt=51734/ *http://tools. search.yahoo. com/\newsearch/category. php?category= shopping>> > >> > >> >> >> >> > --> > Marla Bramer> > Independent Beauty Consultant> >

Kay> > > > mbramer@...> > www.marykay. com/mbramer> >>> ____________ _________ _________ _________ _________ _________ _> OMG, Sweet deal for Yahoo! users/friends: Get A Month of BlockbusterTotal Access, No Cost. W00t> http://tc.deals. yahoo.com/ tc/blockbuster/ text2.com>>>>>> ------------ --------- --------- ---> Like movies? Here's a limited-time offer: Blockbuster Total Access forone month at no cost.> You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.