Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Hi , I am sorry to hear you have to deal with this crazy disease too. you are not alone here, there are over 300 members, coming and going, and we have some that are always around with a lot of knowledge. Steroids are only good short term, and if you have problems when you go off them then you need another medication, and that can be different for everyone. I have been on a few, right now I am on Remicade every 5 weeks, and that seems to be working for me, I also take Plaqunil, and I was on Methotrexate for 5 years, but there are other treatments out there too. You need to talk to your doctor about changing your medications. If you look in the archives, link located at the end of the emails, you will find out information on many medications, print them off and take them with you to your next appt. so you have some options to talk about. I am a nurse who can no longer work as a nurse, and have trouble getting around. But have adjusted for the most part! I wish you well, and know you are welcome here, we are one big family dealing with the same disease, you can rant, cry, yell, etc.. you have questions ask away. welcome, I'm sorry you had to find us, but we are here for you. Marla hi everyone thank you for letting in to the group i actually thought i was alone in this world with a rare case of neurosarcoidosis. I live in the US and i was diagnosed around year 2000. devastated but i handled it but it has been going up and down since then treatment works until they tamper me off the steroids and everything flares up with damaging results. the latest is seizure three back to back. Now i really can't do anything not even work or live alone. If anybody knows a treatment that's been successful can you please let me know. -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Hello I was told I had NS in Feb. of 2005. I wasn't sure I was going to live or sure I wanted to. Here I am 4 years later dealing with it all with the help of family. I am on Prednisone, down to 5mg a day. I also take plaquinil and Methotrexate. Vitamins and a variety of pills for thyroid, RA and other things. I live in an upstairs Apt in Mauston, Wisconsin with my Love and Best Friend. I am glad I chose to fight and live. I am driving, walking and taking care of business. I chose to go with life. The cocktail I am on works for me but everyone is different. Like you have been told by the others talk with your doctors. I pray for you to find what works and for you to be in peace with yourself and this monster we share. You can vent, cry, laugh here. We have a great group with much knowledge to share. Welcome to the group sounds terrible but here we are ready to listen console and understand. ALL YOU SEEK YOU WILL FIND INSIDE YOURSELF Jackie frustrated hi everyone thank you for letting in to the group i actually thought i was alone in this world with a rare case of neurosarcoidosis. I live in the US and i was diagnosed around year 2000. devastated but i handled it but it has been going up and down since then treatment works until they tamper me off the steroids and everything flares up with damaging results. the latest is seizure three back to back. Now i really can't do anything not even work or live alone. If anybody knows a treatment that's been successful can you please let me know. Quote Link to comment Share on other sites More sharing options...
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