Guest guest Posted January 24, 2009 Report Share Posted January 24, 2009 My mother in law recently passed away from complications stemming from neurosarcoidosis. She contracted cryptoccus while in hospital being treated with immune suppressents.She battled for 10 weeks they decided to move her back to Bowral Hospital on Christmas Eve while they were transporting her she had severe seizures and died of a brain haemmorage.The family are all in shock as she had been diagnosed with systemic Lupus and treated with cortisone for 2 years, but she was not getting ant better she was still suffering seizures so she was admitted into Liverpool Hosp in July 2008 it was then discovered she never had Lupus she had Neurosarcoidosis they started her on immune suppresents and she just got worse then they tell us she has developed a fungal infection called cryptoccus so they pumped her full of anti fungal meds she still passed away. Can anyone tell me what causes this disease Neurosarcoidosis is it Auto immune related Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2009 Report Share Posted January 24, 2009 Margaret, First let say how sorry I am for your and your families lost. There is no known cause for Neurosarcoidosis at this time. And there is no known cure at this time. I have Neurosarcoidosis myself. Been all over globe, while in the military. Was diagnosed with Neurosarcoidosis approx. 9 months ago. This learning about this at this time. I am sure the moderators will your question better then I but I send my sorrow over you lost for the doctors here thought I had herpes. I will pray for you and your lost. May your Family be Blessed, Greg > > My mother in law recently passed away from complications stemming from > neurosarcoidosis. She contracted cryptoccus while in hospital being > treated with immune suppressents.She battled for 10 weeks they decided > to move her back to Bowral Hospital on Christmas Eve while they were > transporting her she had severe seizures and died of a brain > haemmorage.The family are all in shock as she had been diagnosed with > systemic Lupus and treated with cortisone for 2 years, but she was not > getting ant better she was still suffering seizures so she was > admitted into Liverpool Hosp in July 2008 it was then discovered she > never had Lupus she had Neurosarcoidosis they started her on immune > suppresents and she just got worse then they tell us she has developed > a fungal infection called cryptoccus so they pumped her full of anti > fungal meds she still passed away. Can anyone tell me what causes this > disease Neurosarcoidosis is it Auto immune related > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2009 Report Share Posted January 24, 2009 thank you for your email how do i contact moderators as i have many questions Subject: Re: DeathTo: Neurosarcoidosis Received: Sunday, 25 January, 2009, 4:27 PM Margaret,First let say how sorry I am for your and your families lost. There is no known cause for Neurosarcoidosis at this time. And there is no known cure at this time. I have Neurosarcoidosis myself. Been all over globe, while in the military. Was diagnosed with Neurosarcoidosis approx. 9 months ago. This learning about this at this time. I am sure the moderators will your question better then I but I send my sorrow over you lost for the doctors here thought I had herpes. I will pray for you and your lost.May your Family be Blessed,Greg>> My mother in law recently passed away from complications stemming from > neurosarcoidosis. She contracted cryptoccus while in hospital being > treated with immune suppressents. She battled for 10 weeks they decided > to move her back to Bowral Hospital on Christmas Eve while they were > transporting her she had severe seizures and died of a brain > haemmorage.The family are all in shock as she had been diagnosed with > systemic Lupus and treated with cortisone for 2 years, but she was not > getting ant better she was still suffering seizures so she was > admitted into Liverpool Hosp in July 2008 it was then discovered she > never had Lupus she had Neurosarcoidosis they started her on immune > suppresents and she just got worse then they tell us she has developed > a fungal infection called cryptoccus so they pumped her full of anti > fungal meds she still passed away. Can anyone tell me what causes this > disease Neurosarcoidosis is it Auto immune related> Stay connected to the people that matter most with a smarter inbox. Take a look. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2009 Report Share Posted January 25, 2009 Margaret, please know that many in this NS family are holding you & your family in our thoughts & prayers tonight. We have some expertise in grief support, so don't hesitate to let us know how you are doing in that respect. You mentioned that your m-i-l had been treated with Cortisone for two years. You probably know that Cortision is an immune-suppressant, so it's possible that the combination of that & whatever meds they started for the NS combined to leave her susceptible. With these serious diseases the choice is often difficult between the disease itself & the treatments now available. Ramblin' RoseModerator To: Neurosarcoidosis From: margaretshepherd@...Date: Sun, 25 Jan 2009 00:55:02 +0000Subject: Death My mother in law recently passed away from complications stemming from neurosarcoidosis. She contracted cryptoccus while in hospital being treated with immune suppressents.She battled for 10 weeks they decided to move her back to Bowral Hospital on Christmas Eve while they were transporting her she had severe seizures and died of a brain haemmorage.The family are all in shock as she had been diagnosed with systemic Lupus and treated with cortisone for 2 years, but she was not getting ant better she was still suffering seizures so she was admitted into Liverpool Hosp in July 2008 it was then discovered she never had Lupus she had Neurosarcoidosis they started her on immune suppresents and she just got worse then they tell us she has developed a fungal infection called cryptoccus so they pumped her full of anti fungal meds she still passed away. Can anyone tell me what causes this disease Neurosarcoidosis is it Auto immune related Windows Live™: E-mail. Chat. Share. Get more ways to connect. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2009 Report Share Posted January 25, 2009 Margaret,So sorry for your loss. Hope you are able to find more answers from the folks here. So many here come from different backgrounds and have lived and battled with this disease for some years. I wish peace, understanding and healing for you and your family during this time.Much Love,Naa Koshie "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 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.