Hello

[Guest guest]

Hello all. sorry for not writing in a little while, but after a

couple of bad days I've had some good. My dr. increased my Lyrica to 400

mgs. and it seems to be working well. Gotta go but I shall write soon.

God Bless

[Guest guest]

Thanks for checking in. Is Lyrica for nerve pain?

Take care,

Tracie

NS co-owner/moderator

To: Neurosarcoidosis Sent: Saturday, December 6, 2008 5:08:39 PMSubject: Hello

Hello all. sorry for not writing in a little while, but after a couple of bad days I've had some good. My dr. increased my Lyrica to 400mgs. and it seems to be working well. Gotta go but I shall write soon.God Bless

[Guest guest]

Terri, that must be so discouraging. At one time you were on an effective drug, then have to go off because of issues with your doctor's status, & since then it's been pin the tail on the donkey. Is this nuts, or what? Just know that we are in your corner & that's got to count for a lot.

Ramblin' RoseModerator

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: mosaicgirl1@...Date: Wed, 13 May 2009 23:44:31 +0000Subject: hello

Hey Guys,Just read the last few posts to try to catch up with everything that isgoing on. I had a computer issue and have just go it up and runninglike it should be. I guess it is a good thing that my son is in IT. Itonly cost 50 bucks to get it back in decent shape. We still have somecleaning up to do but it is a lot better.Just wanted everyone to know I have been thinking of you and praying foryou. I am back to being taken off all meds so I am just here waitingfor something else to come up so we can try something different.Take care everyone.Terri G.

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[Guest guest]

Terri, good to hear from, It is nice having kids with computer knowledge, my computer is one made up of many different parts, and so far so good. (hope I didn't just jinks myself). Hang in there. Blessings,

Marl a

Hey Guys,

Just read the last few posts to try to catch up with everything that is

going on. I had a computer issue and have just go it up and running

like it should be. I guess it is a good thing that my son is in IT. It

only cost 50 bucks to get it back in decent shape. We still have some

cleaning up to do but it is a lot better.

Just wanted everyone to know I have been thinking of you and praying for

you. I am back to being taken off all meds so I am just here waiting

for something else to come up so we can try something different.

Take care everyone.

Terri G.

[Guest guest]

Hi

I am Jackie from Wisconsin. I am 58 and have this malady since '06

I Have much of the same symptoms as you do. It is a challenge everyday. I have to keep on the high side. I want to live to see my grandchildren have children or more.

I am not on any infusion but I take so many meds that sometimes I can't keep them down. Just thinking of them turns me ill.

Keep smiling and Keep trying.

Greg, my husband was in that 4 day desert storm for 10 long months. It was terrible and I never want him to go through that again. 2 wars are enough. (he was in Nam too)

It is such a shame they don't really know what causes this. I blame the medical field, I was a CNA for 20 years.

You both take care and know my prayers are with you. Bless you both.

Jackie

Re: Hello

Well since Desert Sheild/Storm I think because as I study Neurosarcoidosis I find that I have had symptoms since May 1992. I think I know the cause tho I can not prove it. A little untested (at that Time) pill to help us resist certain gas nerve agents. It was known as the BP pill. They say no side effects except for during use in high heat and stress can cause brain damage possiblly.

Diag. with neurosarcoidosis May 8 2008 after it sidelined me hard. and I am also on disability.

> >

> >

> > Hello everyone...

> >

> > I'm ...age 46 from Indianapolis and I was a member before and I

> ve

> > been living with sarcoidosis for 11 years now and it attacked my central

> > nervous system about 9 years ago I left the group because I just wanted to

> > get away from anything or anyone having to do with this disease and

> attempt

> > to try to forget that I had it but wow this disease is so dreadful it won

> t

> > not even for a minute allow you to forget...geesh I have been through so

> > much since attacking my nervous system I have peripheral neuropathy and

> > couldn't even walk for 2 years but though I'm walking I stagger like

> crazy!

> > UGH!

> >

> > I have fallen and broke my elbow and my ankle in the past due to the

> > neuropathy and have fallen many other times but I managed to get up

> without

> > too much damage though it hurt.

> >

> > I've had plasma freesis or whatever it's called lol and I've had this

> other

> > thing done where you go in and they UT the iv in until the fluid is used

> but

> > my memory is bad now so I can't remember what it was called which is

> another

> > thing...bad memory.

> >

> > My eyesight is bad and I get legions around my nose which I go get

> > injections for that hurts like heck! The doc says that I even have legions

> > in my brain so go figure.

> >

> > I have a new thing that is happening now...

> >

> > The skin on my face has developed light spots!?

> >

> > What the hey is going on!

> >

> > I am so mad at this disease!

> >

> > It has and continues to destroy my life and oh yeah I'm on disabilty!

> >

>

>

>

>

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

>

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

> The Neurosarcoidosis Community

>

>

> CHATROOM LINK: http://www.sarcbuddies.com -- Open all the time.....

>

> Message Archives:-

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>

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>

>

[Guest guest]

Hello ...I don't remember Aisha...I have to be honest and say I don't remember much of anything had I known the sarc would effect me like this I would have taken notes lol but thank you and I will keep you in my prayers.

-- Re: Hello

Hi, This is I have been a member since the start of the group. Remember Ahisha? I wish I knew how she was.. I think I remember you .Sorry things are not going well with you. I have good a bad days.Take care, Hello

Hello everyone...

I'm ...age 46 from Indianapolis and I was a member before and I've been living with sarcoidosis for 11 years now and it attacked my central nervous system about 9 years ago I left the group because I just wanted to get away from anything or anyone having to do with this disease and attempt to try to forget that I had it but wow this disease is so dreadful it won't not even for a minute allow you to forget...geesh I have been through so much since attacking my nervous system I have peripheral neuropathy and couldn't even walk for 2 years but though I'm walking I stagger like crazy! UGH!

I have fallen and broke my elbow and my ankle in the past due to the neuropathy and have fallen many other times but I managed to get up without too much damage though it hurt.

I've had plasma freesis or whatever it's called lol and I've had this other thing done where you go in and they UT the iv in until the fluid is used but my memory is bad now so I can't remember what it was called which is another thing...bad memory.

My eyesight is bad and I get legions around my nose which I go get injections for that hurts like heck! The doc says that I even have legions in my brain so go figure.

I have a new thing that is happening now...

The skin on my face has developed light spots!?

What the hey is going on!

I am so mad at this disease!

It has and continues to destroy my life and oh yeah I'm on disabilty!