Colleen Young, Connect Director | @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?
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?
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
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?
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
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
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
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I have Neurosarcoid and I have been treated with predisone, and remecade! I've had Neurosarcoid for 8 yrs. Now. Sending prayers to you!!!
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3 ReactionsWelcome 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?
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Helpful -
Hug
1 ReactionThank you so much!
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
What can we expect from nuerosarcoid.
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?
-
Like -
Helpful -
Hug
1 ReactionSending prayers to ur husband, you, & ur family
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
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
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