Re: I never thought it could be sarc?

October 19, 2005

Janet , the biggest mistake doctors make is underestimating people's intelligence. We know our own bodies. I think that they are told in medical school that women come in with alot of made-up symptoms cuz they want attention or something. Most women are too busy nowadays for that kindof crap. We aren't living in the 1050's are we? Every symptom I ever had always led to something and when i ignored it...it just got worse...so that blows their theory out of the water, hey? I would have told that doctor that I do want to choose living and that I would like to live well not sick if you don't mind. It is sad to say but often they do have to wait til symptoms get worse to treat us. I've seen it so many times. And then they ask why you waited so long!!! You'd just like to strangle them. As moms we also often put ourselves last so this is a real wakeup call to put yourself first so you

will still be around for all the others. Keep us up-to-date on what's going on. hugs S.genkiportland wrote:

I want you all to know that you may feel you are just complaining or venting..but I have learned a lot. I remeber when I was first Dx with sarc I kept telling my doctor I am so sick...He kept telling me to get over it and to chose living. Now, I knew I was right and ignored his comments. But, my frustration comes with having symptoms that I should have addressed years ago. I just never knew it could be sarc. Example: my joint pain, my intense itching at night, stomach cramps.... I know they could mean other things...and I have excused them as such (an old sport injury)or I sought medical attention. But my doctors know so little that they told me to wait until things got worse to start treatment. Since I have found you guys and I am new to this..I take my aches and pains

differently. I first look at it at what else it could indicate....then if it is persistent and typical treatments are not working I am keeping tract and my poor NEW doctor has a list to address in December.I guess I have said a lot to say complain all you want--you never know who might have that same strange symptom----and that would never had thought oh that could mean something....which encourages them to start treatment. Yes, I am talking about me! SO THANKSJanetP.S. I have always chose living....even if it meant parking illegally to watch my children play at the park....play a soccer game..or..go to the grocery store.

Yahoo! Music Unlimited - Access over 1 million songs. Try it free.

October 19, 2005

Janet, a classic example of this is when, a couple of years ago, I was talking about the pain & numbness in my feet & mentioned that it had started as small, brief patches of numbness that felt like pieces of tape on the bottom of my feet. Over several months to a year, the numbness lasted longer & covered more area, until the front half of both feet was constantly numb & burning. I also mentioned that I had felt like I had cobwebs on my face. I had told two doctors about this, including my neurologist, and they both shrugged it off. Now, of course, I know it was the beginning of the peripheral neuropathy, and maybe changing treatment plans might have prevented some of the severe pain I have now. I haven't found anything that describes this scenario. But after I posted that, at least one person, and I think two, said that they had also had that feeling of tape on the feet & cobwebs on the face but hadn't mentioned it for fear of being thought "even crazier" than they already were!

So my point (and yes, I do have one, thank you, Ellen Degeneres) is that maybe someone else will read something like this, think, yeah, I have that & press their doctor harder about it. Anyway, thank you for the affirmation.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: I never thought it could be sarc?Date: Tue, 18 Oct 2005 04:17:59 -0000I want you all to know that you may feel you are just complaining or venting..but I have learned a lot. I remeber when I was first Dx with sarc I kept telling my doctor I am so sick...He kept telling me to get over it and to chose living. Now, I knew I was right and ignored his comments. But, my frustration comes with having symptoms that I should have addressed years ago. I just never knew it could be sarc. Example: my joint pain, my intense itching at night, stomach cramps.... I know they could mean other things...and I have excused them as such (an old sport injury)or I sought medical attention. But my doctors know so little that they told me to wait until things got worse to start treatment. Since I have found you guys and I am new to this..I take my aches and pains differently. I first look at it at what else it could indicate....then if it is persistent and typical treatments are not working I am keeping tract and my poor NEW doctor has a list to address in December.I guess I have said a lot to say complain all you want--you never know who might have that same strange symptom----and that would never had thought oh that could mean something....which encourages them to start treatment. Yes, I am talking about me! SO THANKSJanetP.S. I have always chose living....even if it meant parking illegally to watch my children play at the park....play a soccer game..or..go to the grocery store.~~~~ *** ~~~ *** ~~~ *** ~~~~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

October 19, 2005

Rose, I get that, too. I'm glad you mentioned it cuz it was another thing I just shrugged off. I feel like there is something on my face(right side of nose..like cobwebs) and i constantly reach up to rub it off and there is nothing there and I get the feeling immediately again. What doctor would most likely respond to this...the neuro? hugs S.Rose wrote:

Janet, a classic example of this is when, a couple of years ago, I was talking about the pain & numbness in my feet & mentioned that it had started as small, brief patches of numbness that felt like pieces of tape on the bottom of my feet. Over several months to a year, the numbness lasted longer & covered more area, until the front half of both feet was constantly numb & burning. I also mentioned that I had felt like I had cobwebs on my face. I had told two doctors about this, including my neurologist, and they both shrugged it off. Now, of course, I know it was the beginning of the peripheral neuropathy, and maybe changing treatment plans might have prevented some of the severe pain I have now. I haven't found anything that describes this scenario. But after I posted that, at least one person, and I think two, said that they had also had that feeling of tape on the feet & cobwebs on the face but hadn't

mentioned it for fear of being thought "even crazier" than they already were!

So my point (and yes, I do have one, thank you, Ellen Degeneres) is that maybe someone else will read something like this, think, yeah, I have that & press their doctor harder about it. Anyway, thank you for the affirmation.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: I never thought it could be sarc?Date: Tue, 18 Oct 2005 04:17:59 -0000I want you all to know that you may feel you are just complaining or venting..but I have learned a lot. I remeber when I was first Dx with sarc I kept telling my doctor I am so sick...He kept telling me to get over it and to chose living. Now, I knew I was right and ignored his comments. But, my frustration comes with having symptoms that I should have addressed years ago. I just never knew it could be sarc. Example: my joint pain, my intense itching at night, stomach cramps.... I know they could mean other things...and I have excused them as such (an old sport injury)or I sought medical attention. But my doctors know

so little that they told me to wait until things got worse to start treatment. Since I have found you guys and I am new to this..I take my aches and pains differently. I first look at it at what else it could indicate....then if it is persistent and typical treatments are not working I am keeping tract and my poor NEW doctor has a list to address in December.I guess I have said a lot to say complain all you want--you never know who might have that same strange symptom----and that would never had thought oh that could mean something....which encourages them to start treatment. Yes, I am talking about me! SO THANKSJanetP.S. I have always chose living....even if it meant parking illegally to watch my children play at the park....play a soccer game..or..go to the grocery store.~~~~ *** ~~~ *** ~~~ *** ~~~~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

October 20, 2005

Well, , my neuro blew it off, but that was 3 years ago & I've educated him quite a bit since then. So you might give it a try.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: I never thought it could be sarc?Date: Wed, 19 Oct 2005 07:06:10 -0700 (PDT)

Rose, I get that, too. I'm glad you mentioned it cuz it was another thing I just shrugged off. I feel like there is something on my face(right side of nose..like cobwebs) and i constantly reach up to rub it off and there is nothing there and I get the feeling immediately again. What doctor would most likely respond to this...the neuro? hugs S. 3 FREE months of MSN Dial-up Internet service. Click for full details and to sign-up now!

October 20, 2005

Well, , my neuro blew it off, but that was 3 years ago & I've educated him quite a bit since then. So you might give it a try.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: I never thought it could be sarc?Date: Wed, 19 Oct 2005 07:06:10 -0700 (PDT)

Rose, I get that, too. I'm glad you mentioned it cuz it was another thing I just shrugged off. I feel like there is something on my face(right side of nose..like cobwebs) and i constantly reach up to rub it off and there is nothing there and I get the feeling immediately again. What doctor would most likely respond to this...the neuro? hugs S. 3 FREE months of MSN Dial-up Internet service. Click for full details and to sign-up now!

October 20, 2005

Well, , my neuro blew it off, but that was 3 years ago & I've educated him quite a bit since then. So you might give it a try.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: I never thought it could be sarc?Date: Wed, 19 Oct 2005 07:06:10 -0700 (PDT)

Rose, I get that, too. I'm glad you mentioned it cuz it was another thing I just shrugged off. I feel like there is something on my face(right side of nose..like cobwebs) and i constantly reach up to rub it off and there is nothing there and I get the feeling immediately again. What doctor would most likely respond to this...the neuro? hugs S. 3 FREE months of MSN Dial-up Internet service. Click for full details and to sign-up now!

October 24, 2005

Ditto on the cobwebs here I just assumed it was

cobwebs & I was a lousy housekeeper LOL

--- Solberg mary_s777@...> wrote:

> Rose, I get that, too. I'm glad you mentioned it

> cuz it was another thing I just shrugged off. I

> feel like there is something on my face(right side

> of nose..like cobwebs) and i constantly reach up to

> rub it off and there is nothing there and I get the

> feeling immediately again. What doctor would most

> likely respond to this...the neuro? hugs S.

>

> Rose mamadogrose@...> wrote:

> Janet, a classic example of this is when, a couple

> of years ago, I was talking about the pain &

> numbness in my feet & mentioned that it had started

> as small, brief patches of numbness that felt like

> pieces of tape on the bottom of my feet. Over

> several months to a year, the numbness lasted longer

> & covered more area, until the front half of both

> feet was constantly numb & burning. I also

> mentioned that I had felt like I had cobwebs on my

> face. I had told two doctors about this, including

> my neurologist, and they both shrugged it off. Now,

> of course, I know it was the beginning of the

> peripheral neuropathy, and maybe changing treatment

> plans might have prevented some of the severe pain I

> have now. I haven't found anything that describes

> this scenario. But after I posted that, at least

> one person, and I think two, said that they had also

> had that feeling of tape on the feet & cobwebs on

> the face but hadn't mentioned it for fear of being

> thought " even crazier " than they already

> were!

>

> So my point (and yes, I do have one, thank you,

> Ellen Degeneres) is that maybe someone else will

> read something like this, think, yeah, I have that &

> press their doctor harder about it. Anyway, thank

> you for the affirmation.

>

> Ramblin' Rose

>

> Moderator

>

> ---------------------------------

>

> Reply-To: Neurosarcoidosis

> To: Neurosarcoidosis

> Subject: I never thought it could

> be sarc?

> Date: Tue, 18 Oct 2005 04:17:59 -0000

>

> I want you all to know that you may feel you are

> just complaining or

> venting..but I have learned a lot. I remeber when I

> was first Dx

> with sarc I kept telling my doctor I am so sick...He

> kept telling me

> to get over it and to chose living.

>

> Now, I knew I was right and ignored his comments.

>

> But, my frustration comes with having symptoms that

> I should have

> addressed years ago. I just never knew it could be

> sarc. Example:

> my joint pain, my intense itching at night, stomach

> cramps.... I

> know they could mean other things...and I have

> excused them as such

> (an old sport injury)or I sought medical attention.

> But my doctors

> know so little that they told me to wait until

> things got worse to

> start treatment.

>

> Since I have found you guys and I am new to this..I

> take my aches

> and pains differently. I first look at it at what

> else it could

> indicate....then if it is persistent and typical

> treatments are not

> working I am keeping tract and my poor NEW doctor

> has a list to

> address in December.

>

> I guess I have said a lot to say complain all you

> want--you never

> know who might have that same strange symptom----and

> that would

> never had thought oh that could mean

> something....which encourages

> them to start treatment. Yes, I am talking about

> me! SO THANKS

>

> Janet

>

> P.S. I have always chose living....even if it meant

> parking

> illegally to watch my children play at the

> park....play a soccer

> game..or..go to the grocery store.

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- Has been cancelled for now.

>

> Message Archives:-

>

http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant

> messengers.

>

http://groups.yahoo.com/group/Neurosarcoidosis/database

>

November 6, 2005

I, too, have had the "cobweb" feeling on my face!

Joan

Well, , my neuro blew it off, but that was 3 years ago & I've educated him quite a bit since then. So you might give it a try.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: I never thought it could be sarc?Date: Wed, 19 Oct 2005 07:06:10 -0700 (PDT)

Rose, I get that, too. I'm glad you mentioned it cuz it was another thing I just shrugged off. I feel like there is something on my face(right side of nose..like cobwebs) and i constantly reach up to rub it off and there is nothing there and I get the feeling immediately again. What doctor would most likely respond to this...the neuro? hugs S.

November 7, 2005

So do I, but only the left side, sometimes I just

keep picking at something, and asking if there is anything on my face,

of course my husband/son looks at me like I'm losing it and says things

like, "ya, your skin, or our nose, etc", When I'm tired it makes me

crazy!!! It's not as bad when I'm rested up.

Marla

I, too, have had the "cobweb" feeling on my face!

Joan

In a message dated 10/20/2005 2:28:08 A.M. Eastern Standard

Time, mamadogrose@... writes:

Well, , my neuro blew it off, but that was 3

years ago & I've educated him quite a bit since then. So you might

give it a try.

Ramblin' Rose