Re: Hormone replacment therapy???

March 30, 2007

Haven't heard anything about this at all.

It makes me think that the group that states they have a cure-all is at it again.

Hyperprolactemia is a problem with sarcoidosis-- but the total connections to this and other hormonal issues with sarc is that it is probably effecting the hypothalmus and pituitary glands. It also likes our thyroids-- so who knows-- maybe it's an idea.

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

April 2, 2007

I am new to the group but I have been diagnosed with neurosarcoidosis. They were having a hard time with MS or neurosarcoidosis but with my history of sarcoidosis and the normal test results except for the MRI they have diagnosed me with neuro. I have been on HRT since 2000. I use the Vivelle Dot Patch and was decreased in dosage in late summer early fall. I had my initial attack in 1980 where it hit my left lung and lymph nodes and basically I have been fortunate that I would only get erythema nodusum in late fall when my job would stress me out. I never put it together that it might be the stress. I just could not figure out why at that time. But this time it hit me with optic neuritis which is a precursor to MS which is why it took them a while to come up with a diagnosis. But my symptoms have been like a stroke. I am hanging in there with monthly solumedrol treatments and trying to get off the oral prednisone. Everytime they decrease the dosage too fast I stutter more and have leg problems.

KathySee what's free at AOL.com.

April 2, 2007

More information on HRT...this is not a proven cure. Despite

previous cautions, family members often believe everything they

hear. Of course, now they are angry with me because I won't pack up

my life, take a sabbatical from work and move to Canada to be part of

this 'study'. Obviously, I don't care enough about myself if I'm not

willing to jump at the chance to be 'cured'. Like I need attitude

right now.

Anyway, here's what I've learned third hand...the Hotchkiss Brain

Institute of the University of Calgary is either gearing up for or in

process with a beta trial to study the effects of hormone replacement

therapy on sarcoid. I suspect this would be a treatment rather than a

cure. I couldn't find anything relating to the subject or the study

on the Internet so I'm not sure how much is true, especially with the

bad information I had previously. I'll keep my ears open and post if

I find anything else out.

>

> Haven't heard anything about this at all.

> It makes me think that the group that states they have a cure-all

is at it

> again.

> Hyperprolactemia is a problem with sarcoidosis-- but the total

connections to

> this and other hormonal issues with sarc is that it is probably

effecting the

> hypothalmus and pituitary glands. It also likes our thyroids-- so

who

> knows-- maybe it's an idea.

>

> Tracie

>

> **************************************

> See what's free at

> http://www.aol.com.

>

April 2, 2007

Kathy, welcome to the group. I'm glad you found us, because we are a terrific bunch of people! But I'm sorry that NS is the reason. You'll find that this a place to get & give information and support. You can also feel safe ranting, whining, complaining, even cussing. Many of us feel that we can express feelings that we can't say to our loved ones.

I wasn't clear about the HRT--are you taking it for the sarc, or for menopausal symptoms? If for the sarc, who prescribed it for you?

Ramblin' Rose

Moderator

From: katskreations1@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Hormone replacment therapy???Date: Mon, 2 Apr 2007 08:01:28 EDT

I am new to the group but I have been diagnosed with neurosarcoidosis. They were having a hard time with MS or neurosarcoidosis but with my history of sarcoidosis and the normal test results except for the MRI they have diagnosed me with neuro. I have been on HRT since 2000. I use the Vivelle Dot Patch and was decreased in dosage in late summer early fall. I had my initial attack in 1980 where it hit my left lung and lymph nodes and basically I have been fortunate that I would only get erythema nodusum in late fall when my job would stress me out. I never put it together that it might be the stress. I just could not figure out why at that time. But this time it hit me with optic neuritis which is a precursor to MS which is why it took them a while to come up with a diagnosis. But my symptoms have been like a stroke. I am hanging in there with monthly solumedrol treatments and trying to get off the oral prednisone. Everytime they decrease the dosage too fast I stutter more and have leg problems.

Kathy

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April 2, 2007

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.

KatSee what's free at AOL.com.

April 2, 2007

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,

Tracie

NS Co-owner/moderator

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

April 3, 2007

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.

KatSee what's free at AOL.com.

April 3, 2007

Kat, welcome to the group. You sound like most of us. Pacing our activities to avoid stress which always makes us worse is a biggy. There are alot of people here with diabetes, too. Me included...though for now mine is handled with diet...though I am sure it will worsen in time. I email things I find on the internet about sarc to relatives, etc. And the show House mentions it often so tell them it's not a made-up disease. Idiots. There are just alot of inconsiderate, rude, thoughtless jerks out there and, needless to say, we're related to some of them. If people did any research of their own they'd see how serious it was. Makes you wonder why people have such strong opinions about something they are so ignorant about... But that is the state of things isn't it. People like that are too toxic for me . hang in

there hugs S.katskreations1@... wrote: 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.

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April 3, 2007

Kat, I can't answer the question about stuttering, but I know many of us have the weakness you describe. Anything repetitive is a problem for me; sometimes just eating--lifting a fork or spoon up & down--tires my arms. The doctors test muscle strength by having me push against them, etc. I keep telling them I can do that--once. Try having me do it ten times. They just ignore that.

I also drop a lot of things, have trouble putting in earrings, etc. I have carpal tunnel syndrome in both hands, plus some neuropathy similar to how it started in my feet, so probably both contribute to the problems. I want to buy a rocking knife, as I have trouble cutting veggies, etc. I have a catalog with some nifty stuff, but just haven't gotten around to it.

Ramblin' Rose

Moderator

From: katskreations1@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Hormone replacment therapy???Date: Tue, 3 Apr 2007 18:02:59 EDT

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

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April 4, 2007

Thanks Rose. The stuttering gets to me, the memory loss and the coordination. When I was falling into walls, tripping on carpet etc I could not stand it.

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April 9, 2007

Hey Rose,

Instead of the bra trick, I found the thermopacks at Walmart that you

can either freeze or microwave. Of course I freeze them and put them on

my head when I get too hot. We have two of them so I can rotate them.

Terri G

April 9, 2007

Oh, and be sure to use regular undies--no thongs, strings, etc. The ice bags just fall right out!

Ramblin' Rose

Moderator

From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Hormone replacment therapy???Date: Mon, 9 Apr 2007 02:31:07 EDT

In a message dated 4/8/07 6:00:40 PM Pacific Daylight Time, mamadogrose (AT) hotmail (DOT) com writes:

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

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April 9, 2007

Terri, I use those (gel packs), frozen french fries, the cool bands that you soak in water & stay cool for up to a couple of days, and a fan blowing in my face! Ah, necessity really is the mother of . . . . . well, let's just say the mother of invention. Stay cool, dude.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Hormone replacment therapy???Date: Mon, 09 Apr 2007 11:41:40 -0000

Hey Rose,Instead of the bra trick, I found the thermopacks at Walmart that youcan either freeze or microwave. Of course I freeze them and put them onmy head when I get too hot. We have two of them so I can rotate them.Terri G

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April 9, 2007

Thanks Marla. I am trying to get back with things and slowly working my way back to work and now trying 8 hours a day. I am trying to keep a positive attitude.

KatSee what's free at AOL.com.

April 10, 2007

Be

careful Kat not to over due, when you start feeling tired slow down, it’s

just not worth it to push, a positive attitude is very important too. I

will keep you in my positive thoughts as well.

Marla

Bramer

" Faith

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

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