Guest guest Posted November 27, 2006 Report Share Posted November 27, 2006 Dear Friends, The last view months we're very busy for my. Every single week I went to the academic hospital in the south of the Netherlands (150 miles up and 150 miles down...) But now we have the results. I still have neurosarcoidosis, the granulomas meningitis in 2001 were the first symptoms of the sarcmonster and now I 'm diagnosed with small fiber neuropathy too. I will never work as a cardiac nurse again... I can not write anymore and my memories are worse. The doctors told my finally that I can not working anymore. The complications of my neurosarcoidosis are bad. On this moment they try to find good medication but now I only use pain medication. In December I will get the answers of my skin biopt, the doctors will count the nerves in this biopt, if they are still there...LOL...because I don't feel my feet and fingers anymore... Have a good holiday season. Here in the Netherlands we celebrate on the 5th of December Sinterklaas, with a lot of presents for the children. My lovely boy (1 year old now) and my daughter (7 years) are enthusiastic for it. A big hug from the Netherlands, Yvonne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2006 Report Share Posted November 27, 2006 Yvonne, Small nerve fiber neuropathy can be treated with Plaquenil, Methotrexate, Imuran, Arava or Enbrel, Humira and Remicade. I am on Plaquenil, MTX, and Remicade. I've found that my neuropathy is much worse if I get the least bit dehydrated, and if my bloodsugar gets out of sync. Neurontin is another medication that helps the neuropathy. I know how frustrating it is to lose our jobs and careers. I went thru that 5 yrs ago. It's like losing a part of our very identity. I'm so glad that you have the kids-- and can share time with them. I know that being home full time takes adjustment-- but to get rid of some of the stress will help. Take care, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2006 Report Share Posted November 28, 2006 Thanks Becky ! Blessings too, Yvonne Dear Friends, > > The last view months we're very busy for my. > Every single week I went to the academic hospital in the south of the > Netherlands (150 miles up and 150 miles down...) > But now we have the results. > I still have neurosarcoidosis, the granulomas meningitis in 2001 were > the first symptoms of the sarcmonster and now I 'm diagnosed with > small fiber neuropathy too. > I will never work as a cardiac nurse again... I can not write anymore > and my memories are worse. > The doctors told my finally that I can not working anymore. The > complications of my neurosarcoidosis are bad. On this moment they try > to find good medication but now I only use pain medication. > In December I will get the answers of my skin biopt, the doctors will > count the nerves in this biopt, > if they are still there...LOL...because I don't feel my feet and > fingers anymore... > > Have a good holiday season. Here in the Netherlands we celebrate on > the 5th of December Sinterklaas, with a lot of presents for the > children. My lovely boy (1 year old now) and my daughter (7 years) are > enthusiastic for it. > > A big hug from the Netherlands, > > Yvonne > > > > > > > > --------------------------------- > Sponsored Link > > $420,000 Mortgage for $1,399/month - Think You Pay Too Much For Your Mortgage? Find Out! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2006 Report Share Posted November 28, 2006 Dear Tracie, I'm on amitriptyline as pain medication (off course I'm not having a depression). May be I will be on MTX in a couple of months. I have heard about the medication you use, but those are not regularly prescribed over here, yet. Indeed dehydration will make things worse especially because I also have a lumboperitonial shunt because of the high liquor pressure resulting of the granulomas meningitis as type of my neurosarcoidosis. Take care and off course a big hug from the Netherlands, Yvonne > > Yvonne, > Small nerve fiber neuropathy can be treated with Plaquenil, Methotrexate, > Imuran, Arava or Enbrel, Humira and Remicade. > I am on Plaquenil, MTX, and Remicade. > I've found that my neuropathy is much worse if I get the least bit > dehydrated, and if my bloodsugar gets out of sync. > Neurontin is another medication that helps the neuropathy. > I know how frustrating it is to lose our jobs and careers. I went thru that > 5 yrs ago. It's like losing a part of our very identity. I'm so glad that > you have the kids-- and can share time with them. I know that being home full > time takes adjustment-- but to get rid of some of the stress will help. > Take care, > Tracie > NS Co-owner/moderator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2006 Report Share Posted November 29, 2006 Yvonne, Your story sounds only too familiar, I was once a Labor and Delivery nurse, it was my dream job, and I loved it, had to leave the hospital twice, I think my last time will be the last time. You will hear this story from others as well, funny how many nurses there are with Sarc. I am sorry to hear your story, but know you have found a wonderful, blessed family here, enjoy your children they grow up so fast, mine our 21, 18, and 11. Blessings, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of ytvv342002 Sent: Monday, November 27, 2006 3:25 AM To: Neurosarcoidosis Subject: little update Dear Friends, The last view months we're very busy for my. Every single week I went to the academic hospital in the south of the Netherlands (150 miles up and 150 miles down...) But now we have the results. I still have neurosarcoidosis, the granulomas meningitis in 2001 were the first symptoms of the sarcmonster and now I 'm diagnosed with small fiber neuropathy too. I will never work as a cardiac nurse again... I can not write anymore and my memories are worse. The doctors told my finally that I can not working anymore. The complications of my neurosarcoidosis are bad. On this moment they try to find good medication but now I only use pain medication. In December I will get the answers of my skin biopt, the doctors will count the nerves in this biopt, if they are still there...LOL...because I don't feel my feet and fingers anymore... Have a good holiday season. Here in the Netherlands we celebrate on the 5th of December Sinterklaas, with a lot of presents for the children. My lovely boy (1 year old now) and my daughter (7 years) are enthusiastic for it. A big hug from the Netherlands, Yvonne Quote Link to comment Share on other sites More sharing options...
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