Neurosarcoidosis

Posted by brittneyj025 @brittneyj025, Jun 11, 2012

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

I am in hopes of gaining infomation on the treatment of neurosarcoidosis and chatting with anyone who is now being treated for this disorder.

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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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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?

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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.

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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

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@colleenyoung

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?

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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

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@ddade19

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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What can we expect from nuerosarcoid.

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@ddade19

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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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?

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@chesneydell1965

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

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Sending prayers to ur husband, you, & ur family

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@ddade19

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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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

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@ddade19

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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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

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