Re: Neuro sarcoidosis

[Guest guest]

Hi

I too have NS. My only suggestion is to listen to the advice you will get from the moderators of this group and Hang in there.

When I was found to have NS nobody thought I would live. They didn't know how to handle it in Wisconsin either. I am the only Sarc patient in Mauston, WI and the close region around including Madison. I am now walking with a walker and doing so much on my own. I won't give up and let this beat me. Don't you let it beat you. Keep your muscles moving so they don't freeze up. Keep your spirits high so you wont give up. You are in the prayers of so many here in sarcland. We all have the monster in one form or another. You will get answers from the moderators as soon as possible so hang in there.

God Bless and Keep you, Make you strong in mind, body and soul.

I am sorry we met this way but glad you found the group. They are GREAT.

Jackie

Neuro sarcoidosis

Hi I don't think Iv'e ever posted. I was diagnosed with sarcoidosis in may after going to the Drs, for Five years. It show up on a CT scan of my chest two years ago, and the dr then told me not worry that It was nothing that I probably had TB as a child. I had a lung and lymph node biopsy.I have had horrible pain in my muscles and bones, then the last two years i have felt numb all over. I fall, I have fell so many times, I hurt bones and I have hurt my neck and now I need surgery to fix it. I went to Atlanta to Emory and they also diagnosed me with Neuro- Sarcoidosis. I now walk with a walker ,I'm 45 I'm scared it seems like no one in Alabama really knows what to do especially in Gadsden. My legs from my knees down stays numb and jerk and shake all of the time.Does anyone have any suggestion?

[Guest guest]

>I too have neuro-sarc. It took them 7yrs. to diagnose whar I have

after a neck biopsy. Ther's a specialist I went to at USC med center.

his name is dr.sharma. His site is, neurosarcoidosissharma.com. If

that's not it, let me know & I'll get the correct address.

Much Respect. Royce

>

[Guest guest]

THE CORRECT SITE ADDRESS IS www.sarcoidosissharma.com

Re: Neuro sarcoidosis

>I too have neuro-sarc. It took them 7yrs. to diagnose whar I have after a neck biopsy. Ther's a specialist I went to at USC med center. his name is dr.sharma. His site is, neurosarcoidosissha rma.com. If that's not it, let me know & I'll get the correct address.Much Respect. Royce>

[Guest guest]

Alice

First of all welcome to our group. Second the best place for care

for Neurosarcoidosis is the University Texas SW in Dallas Texas. I

only have the neuro variety. Never had the lung variety. I have to use

a cane to keep my balance and I am doing better. I am 44 and I am

still learning myself, the Group will probably will able you give

better info. I just wanted to welcome to group. And with you

permission I will add you to my prayers as Pray for all in group and

myself for cure.

May you be please and your pain be lessen.

Greg

>

> Hi I don't think Iv'e ever posted. I was diagnosed with sarcoidosis in

> may after going to the Drs, for Five years. It show up on a CT scan of

> my chest two years ago, and the dr then told me not worry that It was

> nothing that I probably had TB as a child. I had a lung and lymph node

> biopsy.I have had horrible pain in my muscles and bones, then the last

> two years i have felt numb all over. I fall, I have fell so many times,

> I hurt bones and I have hurt my neck and now I need surgery to fix it.

> I went to Atlanta to Emory and they also diagnosed me with Neuro-

> Sarcoidosis. I now walk with a walker ,I'm 45 I'm scared it seems like

> no one in Alabama really knows what to do especially in Gadsden. My

> legs from my knees down stays numb and jerk and shake all of the time.

> Does anyone have any suggestion?

>

[Guest guest]

Yes please add me to your prayer list, I want the prayers of all prayer warrior I believe God is going to get the glory.

Thanks,

Alice

Subject: Re: Neuro sarcoidosisTo: Neurosarcoidosis Date: Wednesday, November 12, 2008, 3:14 AM

AliceFirst of all welcome to our group. Second the best place for carefor Neurosarcoidosis is the University Texas SW in Dallas Texas. Ionly have the neuro variety. Never had the lung variety. I have to usea cane to keep my balance and I am doing better. I am 44 and I amstill learning myself, the Group will probably will able you givebetter info. I just wanted to welcome to group. And with youpermission I will add you to my prayers as Pray for all in group andmyself for cure.May you be please and your pain be lessen.Greg >> Hi I don't think Iv'e ever posted. I was diagnosed with sarcoidosis in > may after going to the Drs, for Five years. It show up on a CT scan of > my chest two years ago,

and the dr then told me not worry that It was > nothing that I probably had TB as a child. I had a lung and lymph node > biopsy.I have had horrible pain in my muscles and bones, then the last > two years i have felt numb all over. I fall, I have fell so many times, > I hurt bones and I have hurt my neck and now I need surgery to fix it. > I went to Atlanta to Emory and they also diagnosed me with Neuro- > Sarcoidosis. I now walk with a walker ,I'm 45 I'm scared it seems like > no one in Alabama really knows what to do especially in Gadsden. My > legs from my knees down stays numb and jerk and shake all of the time.> Does anyone have any suggestion?>