Re: Raynaud's, where do you have it?

[Guest guest]

,

I have RA, my sister has Raynauds, my mother had vasculitis (in remission, she's

still kicking at 81). My youngest (21) had ear issues and was tested while the

doc was fixing other things, he tested positive for markers for AIED, autoimmune

inner ear disease. I had no idea such a thing existed but it does. If he has

hearing loss, he must be tested immediately and if it is active, he'll have to

go on mtx probably for life. Talk about guilt.

in PA

[ ] Raynaud's, where do you have it?

My family is a veritable portrait of autoimmune illnesses. My mat gma had

Raynaud's in her hands. I wonder if I get it in my ears, but DH thinks I'm

nuts. When it's even in the 50s and the wind blows, they quickly get numb and

achey. My hands seem fine, but since college I've had to protect my ears or

they feel like they're going to fall off, even when it's not that cold. Anyone

else?

[Guest guest]

Hi ,

I have full Raynald's and do get very cold ears and feet along with my

hands. My it's cold out I make sure to wear a hat. When my hands get

chilly they turn white and nailbeds are purple. Even happens with our

A/C on. When I am too warm my fingers and hand turn bright red but not

my palm.

hugs,

Debbie L

>

>

>

>

[Guest guest]

and group;

Me and my grandmother (grandma died many years ago) was the

only one's in our family with RA and OA. Out of about 22 blood uncles

and aunts, 10 brothers and sisters and about 90 blood first cousins.

Go figure. THat makes me so happy no one else has it in my family. I

guess its like what someone said, The Luck of the Draw.

I am so sorry to here that your most of your family got the autoimmune

disease. God bless and take care.

gentle hugs

Clora

*************************************************************

> My family is a veritable portrait of autoimmune illnesses.  My mat

gma had Raynaud's in her hands.  I wonder if I get it in my ears, but

DH thinks I'm nuts.  When it's even in the 50s and the wind blows, they

quickly get numb and achey.  My hands seem fine, but since college I've

had to protect my ears or they feel like they're going to fall off,

even when it's not that cold.  Anyone else?

>

>

>

>

>

[Guest guest]

Thanks, Clora, I figure if I had to have RA in order to be here, I guess I'd

take RA over the alternative!  The same genes from my grandmother that

contributed to the RA make me who I am, so it's the good with the bad, I

suppose!  Sometimes I cringe when I look at my boys, wondering which of my genes

they carry and what if they or their children will have to face autoimmune

disease.  Then I say a prayer there will be more options for them.  Maybe

they'll figure out how to do gene therapy - without killing people!

Hugs to all, Kate

 

________________________________

From: CLORA <clora4jesus@...>

Sent: Wednesday, October 29, 2008 4:29:52 PM

Subject: [ ] Re: Raynaud's, where do you have it?

and group;

Me and my grandmother (grandma died many years ago) was the

only one's in our family with RA and OA. Out of about 22 blood uncles

and aunts, 10 brothers and sisters and about 90 blood first cousins.

Go figure. THat makes me so happy no one else has it in my family. I

guess its like what someone said, The Luck of the Draw.

I am so sorry to here that your most of your family got the autoimmune

disease. God bless and take care.

gentle hugs

Clora

************ ********* ********* ********* ********* ********* ****

> My family is a veritable portrait of autoimmune illnesses.  My mat

gma had Raynaud's in her hands.  I wonder if I get it in my ears, but

DH thinks I'm nuts.  When it's even in the 50s and the wind blows, they

quickly get numb and achey.  My hands seem fine, but since college I've

had to protect my ears or they feel like they're going to fall off,

even when it's not that cold.  Anyone else?

>

>

>

>

>

[Guest guest]

wow debbie this sounds like what I have been going through. yesterday I had to

work in a place that had no heat. My hands turned white and my fingernails and

beds turned purple and my finger tips tingled. When I was on the way home and

had turned the heat up in the car, my face tingled and went numb for most of my

15 min drive home along with my hands.

[ ] Re: Raynaud's, where do you have it?

Hi ,

I have full Raynald's and do get very cold ears and feet along with my

hands. My it's cold out I make sure to wear a hat. When my hands get

chilly they turn white and nailbeds are purple. Even happens with our

A/C on. When I am too warm my fingers and hand turn bright red but not

my palm.

hugs,

Debbie L

>

>

>

>

[Guest guest]

Kate,

I have secondary Raynaud's. When I have an attack, it can be my hands,

feet, ears, and the tip of my nose. Also, often my whole right arm is

affected - it's weird, like a big cramp. I've also had one digital

ulcer, so I'm trying to be extra careful and prevent future attacks.

Tell your DH that you are not nuts.

Not an MD

On Wed, Oct 29, 2008 at 3:37 PM, Fair <kalfoley@...> wrote:

> My family is a veritable portrait of autoimmune illnesses. My mat gma had

> Raynaud's in her hands. I wonder if I get it in my ears, but DH thinks I'm

> nuts. When it's even in the 50s and the wind blows, they quickly get numb

> and achey. My hands seem fine, but since college I've had to protect my

> ears or they feel like they're going to fall off, even when it's not that

> cold. Anyone else?

[Guest guest]

Dear - please don't feel guilty for your son's AI disorders. I do

understand, though as my daughter has MS - another AI disorder. But,

if you think about it, if we all had genetic profiling done prior to

having children, we may have considered remaining childless. I am sure

there are a lot more illness, diseases and disorders in my family than

I am aware of. Both of my girls have the big earlobes and weight

issues that are inherited from my side of the family, too, so I choose

to be grateful for the blessings of them and accept whatever life

throws at us in the meantime. I hope that all made sense. Hugs to you

all..........Doreen

>

> ,

>

> I have RA, my sister has Raynauds, my mother had vasculitis (in

remission, she's still kicking at 81). My youngest (21) had ear

issues and was tested while the doc was fixing other things, he tested

positive for markers for AIED, autoimmune inner ear disease. I had no

idea such a thing existed but it does. If he has hearing loss, he

must be tested immediately and if it is active, he'll have to go on

mtx probably for life. Talk about guilt.

>

> in PA

>

[Guest guest]

I also have secondary raynaulds..My rheumy at the cleveland clinic put

me on low dose of norvasc(vasodilater).. i have less severe episodes..I

feel my body is warmer...Best thing I ever did..diane in ohio

[Guest guest]

Thanks so much for posting about this. My hand and feet are often cold and I

have Raynaud's in my toes and index fingers. One provider I have been seeing

seems to think that RA can't exist with cold joints. I do remember my

Grandmother, who had RA was always cold so I wondered about this.

-Keri

[Guest guest]

Keri and group;

Keri whats funny about medical science. If that doc is right now.

In 10 years they will find evidence to the contrary haaaaaa.

hugs

clora

*******************************************************************

> Thanks so much for posting about this. My hand and feet are often

cold and I have Raynaud's in my toes and index fingers. One provider

I have been seeing seems to think that RA can't exist with cold

joints. I do remember my Grandmother, who had RA was always cold so

I wondered about this.

>

> -Keri

>

>