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brittneyj025

Neurosarcoidosis

Posted by @brittneyj025 in Brain & Nervous System, Jun 11, 2012

Has anyone here been treated for Neurosarcoidosis? if so what treatments worked for you?

Kimberly and DADE like this
ddade19

Posted by @ddade19, Jul 26, 2016

I have Neurosarcoid and I have been treated with predisone, and remecade! I've had Neurosarcoid for 8 yrs. Now. Sending prayers to you!!!

chesneydell1965

Posted by @chesneydell1965, Nov 6, 2016

What can we expect from nuerosarcoid.

ddade19

Posted by @ddade19, Nov 6, 2016

I have neurosarcoid and been treated with both predisone and remecade too. I have also had it for 8 yrs. Are u still on predisone if so how many mg? How dis the remecadr work for you?

chesneydell1965

Posted by @chesneydell1965, Nov 7, 2016

1000 mg and a insulin drip right now ... he also is on methatrcate if i spelled that right . For sarcoidosis then later with in months we found he also has neurosarcoidosis do far thebonly trestment is the 1000 mg steriods

chesneydell1965

Posted by @chesneydell1965, Nov 7, 2016

You have had this for 8 years, tell me what to expect please,. Right now we deal with seizures, anger out bursts, confusdion, memory loss , vision loss

chesneydell1965

Posted by @chesneydell1965, Dec 26, 2016

This is Tammi my husband is Chesney he has neurosarcoidosis what to expect. This is what i know. He now has seizures cranky to mean sometimes but pain plays a role, he gets confused gets lost in the back yard, eye site is bad, he don't like the food I cook nor the smell ,. Too many things going on at one time will drive him crazy I have to try and treat him like he has autism. He can't handle company. Questions and me cooking at one time it's too much

colleenyoung

Posted by @colleenyoung, Jul 26, 2016

Welcome to Connect @ddade19. I hope @brittneyj025 will return to join you here. It has been a while since she posted.

In the meantime, we would like to get to know a bit more about you. I'm not that familiar with neurosarcoidosis. What were the symptoms or circumstances that led to your diagnosis? And how are you doing now?

chesneydell1965

Posted by @chesneydell1965, Nov 6, 2016

My husband has sarcoidosis of the lungs skin and now has traveled to his brain. Neurosarcoidosis, currently in the hospital beung treated, he has a low spinal fluid preasure , the spinal tap took a long time due to some type of blockage

sebley12

Posted by @sebley12, Aug 10, 2016

I have heard of this before but actually have just Sarcoidosis of the lungs. Its rather annoying with the constant cough. I will keep you in my prayers.

ddade19

Posted by @ddade19, Aug 10, 2016

Thank you so much!

chesneydell1965

Posted by @chesneydell1965, Nov 6, 2016

My husband is being treated this week end in a hospital setting. Mostly steroids, we knew he had sarcoidosis. But now they told us he has this too

ddade19

Posted by @ddade19, Nov 6, 2016

Sending prayers to ur husband, you, & ur family

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