Re: Neuralsarcoidosis

[Guest guest]

desiraed74,

That would depend on the Doctors and the treatment he would of recieved. There

are alot of us here who have been misdiagnosed. I myself I was misdiagnosed from

1990 until 2008. I have Neurosarcoidosis and I an currently being treated with

Prednisone and Imuran. No two people really react the same way to the same

treatment. But there is a possiblilty that he may not have had extended

illnesses if he was treated sooner, but then he if was he could have had the

same illnesses.

I wish you and your Husband many loving and pain free days,

Greg aka Krumdawg

>

> My husband started having seizures at the end of December. The pulmonologist

at the VA Hospital found the slides from a biopsy another hospital did back in

2003 and sent them to Mayo. We have now learned that Mayo sent confirmation of

the sarcoidosis diagnosis to the hospital the biopsy was done at back in 2003

and my husband was never treated. If he had been treated for his sarcoidosis in

2003 would he have developed so many debilitating health problems?

>

[Guest guest]

, I'm so sorry you & your husband are going through this. Whether treatment in 2003 would have prevented neuro involvement, who knows? If he only had pulmonary symptoms back then, it's likely they would have given him Prednisone until the symptoms resolved. Most folks treated with Pred alone will relapse at some point, often with more severe systemic disease. So it's possible he could have been treated, gone into so-called "remission" & developed these other symptoms anyway. In my case, I was diagnosed with sarc in 1994 by a biopsy of the hilar nodes in the chest. At that time my lungs were clear & I had no symptoms. 5 years later I lost hearing in both ears & had a Bell's palsy. Could some kind of treatment have prevented the hearing loss & later problems? In looking back, maybe, but what drug would I have wanted to take for 5 years when I was having no symptoms? That's one of the factors that makes this disease suckoidosis.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

"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: desiraed74@...Date: Thu, 14 May 2009 16:39:58 +0000Subject: Neuralsarcoidosis

My husband started having seizures at the end of December. The pulmonologist at the VA Hospital found the slides from a biopsy another hospital did back in 2003 and sent them to Mayo. We have now learned that Mayo sent confirmation of the sarcoidosis diagnosis to the hospital the biopsy was done at back in 2003 and my husband was never treated. If he had been treated for his sarcoidosis in 2003 would he have developed so many debilitating health problems?

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[Guest guest]

I'm sorry to hear of your husbands health problems, but it is really difficult to know if Treatment in 2003 would have prevented what he is having now. I was dx in 1994, cervical lymph node, no problems, then about 6 months I was having trouble

breathing, treated with Pred.  went into remission, I have been in and out of remission 2-3 times, can't remember, but here I am now with NeuroSarc, for the past 6 years, on and off different treatments, so even with early treatment, and treatment every time I had a problem.

on Pred at one point for 3 years, I am still progressing, I am on Remicade every 5 weeks now,slowed the progression down, but has not stopped it.  So it is really hard to say, that he would be better now with earlier treatment. 

I wish you the best, and know that we are here to help you, if you have questions or concerns, please ask away.  This is a very  supportive group, and we've all been through a lot.  Blessings, Marla

My husband started having seizures at the end of December. The pulmonologist at the VA Hospital found the slides from a biopsy another hospital did back in 2003 and sent them to Mayo. We have now learned that Mayo sent confirmation of the sarcoidosis diagnosis to the hospital the biopsy was done at back in 2003 and my husband was never treated. If he had been treated for his sarcoidosis in 2003 would he have developed so many debilitating health problems?