RE: Re: Hormone replacment therapy???

[Guest guest]

Hi Kat,

Wow just

listening to all that you have been doing is wearing me out; I’m ready

for a nap. I can’t take very much physical activity either, hey

yesterday I walked 6 mins on the treadmill and was proud of myself. I hope

you can slow down now and catch up on your health. This is a great group and

you will get a lot of support here. Hope you are on the mend. Marla

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of katskreations1@...

Sent: Monday, April 02, 2007 4:17

PM

To: Neurosarcoidosis

Subject: Re:

Re: Hormone replacment therapy???

Thank you very much. I

am taking the HRT for a total hysterectomy I had in 2000. It is

nice that I will be able to talk to people. Some people ask and want to

listen and I find others do not want to know anything at all or think I am

making it up. I think the most difficult is my daughter. I

have had this the majority of her life and have always had major medical

problems from surgeries to residuals from sarcoid and you look like you are

okay and people think it is in your head. My daughter even said someone

said this is a made up disease. I wish it was. So when people shut

you out of their life because they say it is depressing it hurts. I

have always listened and helped others when I have been okay. I

think this has been the most devastating with losing my eyesight and then all

the problems from the NS. I am better than I was in January and if I have

to deal with the stuttering I guess that will take time. I have

always been a very independent woman and have done everything myself. I

guess the stress from work and then trying to downsize and remodel my whole

house inside and out was too much for my immune system. I was not eating

right and my diabetes was probably out of control and then exposure to all the

chemicals of painting, new carpeting, new floors etc must have put me over the

edge. So now I have insulin injections to get use to while on prednisone.

I am glad I did tons of research and

found your group. It is nice to see that they have some breaking news in

March about sarcoidosis. It has basically always been the same

since my major attack in 1980.

Thanks again.

Kat

See what's free at AOL.com.

[Guest guest]

Yes Kat,

I have the same issues, I’m not sure about the stuttering, but I have

trouble getting the words out of mouth, so will then get caught on a word and

repeat it until the other one comes, but sometimes it just doesn’t’

come out, I know the frustration, I was teaching up until Dec. but quit that as

I felt lost too many times in the middle of my lecture, then the whole class is

staring at you!

Are you

finding the once a month treatment of solu-medrol is helping?

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of katskreations1@...

Sent: Tuesday, April 03, 2007 4:03

PM

To: Neurosarcoidosis

Subject: Re:

Re: Hormone replacment therapy???

Thank you so very much. Can anyone

tell me if the stuttering gets better or almost heals? Also does anyone

else have trouble with using the word words sometimes in sentences? This

is so frustrating most especially at work with the faster pace. I am

still on IV treatments once a month of 1000 mg solu-medrol and daily prednisone

which they are trying to wean me off. Since the optic neuritis attack I

do have my vision back but not like it was and not sure I will ever get it back

the way it was.

I also have trouble with not being able

to lift like I use to as well as ability to open things with my hands. It

is strange but I have difficult opening things up or dropping things.

Thanks.

Kat

See what's free at AOL.com.

[Guest guest]

HI Marla,

Right now the solu-medrol seems to be working in addition to the oral prednisone which they are trying to get me off of.

I guess I have trouble getting the words out and consider it stuttering as you keep trying to say it over and over.

Thanks

KatSee what's free at AOL.com.

[Guest guest]

Tracie, I am premenopausal myself. I don't have hot flashes though. I find myself being hot all the time. Sometimes I get so sweaty , its embarrassing. I gotta go wipe my face. But I didn't know if this was from the sarc or the menopause! I will be 45 in July, so I assume it may be from the menopause. Like you too, I sweat in bed unless I take the covers off, but sometimes just laying there reading , I get so hot...... Debbie Co-Moderatortiodaat@... wrote: Hi Kat,Welcome to the family. Like Rose said-- it would be better that you weren't here because of sarc-- but at least you're among

friends.It's interesting that HRT's are being considered a treatment for sarcoidosis-- I've not heard anything about them. I took HRT's for MANY years from the time I was 29 to 45-- my body didn't know whether I needed to be in menopause or if it was just sarc interferance. One thing I did learn in all my research is that Hyperprolactemia is a sign of sarcoidosis. I wasn't able to conceive (my son's a fertility pill kid)-- because my body was thinking it was needing to breast feed something ( I truly could have been a wet nurse)- and that was keeping me from ovulating. That was way back in the early 1980's. I wasn't dx'd with sarc until 1990-- but I'm sure I had it way back then. I am a bit gunshy of trying HRT's for sarc-- to high a dose and you set yourself up for breast and ovarian cancers. However, now that I'm truly menopausal, I would love to have a night where I don't wake up with a puddle in the middle of my

chest from the hot flashes. (it's a real bugger with flannel sheets on the bed--lol!)This will be an interesting concept- we'll have to see what unfolds. Take care,TracieNS Co-owner/moderator**************************************See what's free at http://www.aol.com.

It's here! Your new message!Get

new email alerts with the free Yahoo! Toolbar.

[Guest guest]

You know, you guys could take a page from my book & put ice packs in your bras. Not on your heads, but the regular place! For Christmas my niece Sharon made me two little rice bags to freeze, because she knew hot how I get. They don't stay cold long, but it's often just enough to cool me off so I can sleep. I tuck them here & there . . . .

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Hormone replacment therapy???Date: Sun, 8 Apr 2007 09:41:42 -0700 (PDT)

Tracie,

I am premenopausal myself. I don't have hot flashes though. I find myself being hot all the time. Sometimes I get so sweaty , its embarrassing. I gotta go wipe my face. But I didn't know if this was from the sarc or the menopause! I will be 45 in July, so I assume it may be from the menopause. Like you too, I sweat in bed unless I take the covers off,

but sometimes just laying there reading , I get so hot......

Debbie

Co-Moderatortiodaat (AT) aol (DOT) com wrote:

Hi Kat,Welcome to the family. Like Rose said-- it would be better that you weren't here because of sarc-- but at least you're among friends.It's interesting that HRT's are being considered a treatment for sarcoidosis-- I've not heard anything about them. I took HRT's for MANY years from the time I was 29 to 45-- my body didn't know whether I needed to be in menopause or if it was just sarc interferance. One thing I did learn in all my research is that Hyperprolactemia is a sign of sarcoidosis. I wasn't able to conceive (my son's a fertility pill kid)-- because my body was thinking it was needing to breast feed something ( I truly could have been a wet nurse)- and that was keeping me from ovulating. That was way back in the early 1980's. I wasn't dx'd with sarc until 1990-- but I'm sure I had it way back then. I am a bit gunshy of trying HRT's for sarc-- to high a dose and you set yourself up for breast and ovarian cancers. However, now that I'm truly menopausal, I would love to have a night where I don't wake up with a puddle in the middle of my chest from the hot flashes. (it's a real bugger with flannel sheets on the bed--lol!)This will be an interesting concept- we'll have to see what unfolds. Take care,TracieNS Co-owner/moderator**************************************See what's free at http://www.aol.com.

It's here! Your new message!Get new email alerts with the free Yahoo! Toolbar.

Get a FREE Web site, company branded e-mail and more from Microsoft Office Live!

[Guest guest]

What it is that you are reading? Hot can be good! LOL!

These hot flashes are a bugger, and the soggy sheets are nasty-- but it's all good.

It's the emotional roller coaster that I want off of. Either that, or put all the other morons in my life on the roller coaster, and let it fly---hmmm, that might just work!

Warp speed, here they come!

gnomelady************************************** See what's free at http://www.aol.com.

[Guest guest]

take a page from my book & put ice packs in your bras. Not on your heads, but the regular place

Rose, where is your regular place-- you are one scary woman, but we love ya! Here and there--************************************** See what's free at http://www.aol.com.