Guest guest Posted April 29, 2011 Report Share Posted April 29, 2011 Well I just reset my settings from daily digest to individual messages because it's lonely out there and I miss you all! I had been a bit swamped with everything but will try and balance things a bit better so I can check in because I didn't realise how much I needed support from people in a similar situation. In the last couple of months I've had 3 incidents with people just not getting NS and that left me a bit shattered. I have been without any sort of medication for 2 months now, after my last steroid infusion I just felt I couldn't take it any more. My neuro had suggested having a chemo infusion and my response was to put my head in the sand... Since then I'm back on my walking stick and my vision is going, but I'm at a lost for what I should do. Steroids make my heart go crazy. Imuran, methotrexate and cellcept made me ill, what does that leave? Hello to our new member, did I see the words Melbourne, mentioned?? I'm from that area! How is everyone? Rach Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2011 Report Share Posted April 29, 2011 I know exactly what you mean I am now paralyzed from the waist down on the right side. After a very close call with cryptococcal meningitis, I am now off all of my prednisone and going through bad withdrawals. I will be starting the methotrexate again next week. I'm not looking forward to it since I'm already sick at my stomach from the lack of prednisone. I have been approved for an electric wheelchair by my insurance so hopefully that will make mobility better. Hang in there.Pearl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2011 Report Share Posted April 29, 2011 Rach, I don't see Plaquanil or Remicade, how about those? good to see you back Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb Well I just reset my settings from daily digest to individual messages because it's lonely out there and I miss you all! I had been a bit swamped with everything but will try and balance things a bit better so I can check in because I didn't realise how much I needed support from people in a similar situation. In the last couple of months I've had 3 incidents with people just not getting NS and that left me a bit shattered. I have been without any sort of medication for 2 months now, after my last steroid infusion I just felt I couldn't take it any more. My neuro had suggested having a chemo infusion and my response was to put my head in the sand... Since then I'm back on my walking stick and my vision is going, but I'm at a lost for what I should do. Steroids make my heart go crazy. Imuran, methotrexate and cellcept made me ill, what does that leave? Hello to our new member, did I see the words Melbourne, mentioned?? I'm from that area! How is everyone? Rach Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2011 Report Share Posted May 4, 2011 Hang in there kiddo. We've got your back/// To: Neurosarcoidosis Sent: Fri, April 29, 2011 2:09:42 AMSubject: Back again... Well I just reset my settings from daily digest to individual messages because it's lonely out there and I miss you all!I had been a bit swamped with everything but will try and balance things a bit better so I can check in because I didn't realise how much I needed support from people in a similar situation. In the last couple of months I've had 3 incidents with people just not getting NS and that left me a bit shattered.I have been without any sort of medication for 2 months now, after my last steroid infusion I just felt I couldn't take it any more. My neuro had suggested having a chemo infusion and my response was to put my head in the sand...Since then I'm back on my walking stick and my vision is going, but I'm at a lost for what I should do. Steroids make my heart go crazy. Imuran, methotrexate and cellcept made me ill, what does that leave?Hello to our new member, did I see the words Melbourne, mentioned?? I'm from that area!How is everyone?Rach Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2011 Report Share Posted May 4, 2011 Pearl, have they checked your adrenal gland since you went off the pred. I didn't know pred could mess with it like it does, and till the doctor figured it out I felt like dirt, and had nausea from the bad place To: Neurosarcoidosis Sent: Fri, April 29, 2011 3:21:13 PMSubject: Re: Back again... I know exactly what you mean I am now paralyzed from the waist down on the right side. After a very close call with cryptococcal meningitis, I am now off all of my prednisone and going through bad withdrawals. I will be starting the methotrexate again next week. I'm not looking forward to it since I'm already sick at my stomach from the lack of prednisone. I have been approved for an electric wheelchair by my insurance so hopefully that will make mobility better. Hang in there.Pearl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2011 Report Share Posted May 7, 2011 Pearl, sorry I'm late replying to your message. You might ask your doctor about Mtx injections. Some folks have tolerated them better than the pills. Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: gstroop1497@...Date: Fri, 29 Apr 2011 12:21:13 -0700Subject: Re: Back again... I know exactly what you mean I am now paralyzed from the waist down on the right side. After a very close call with cryptococcal meningitis, I am now off all of my prednisone and going through bad withdrawals. I will be starting the methotrexate again next week. I'm not looking forward to it since I'm already sick at my stomach from the lack of prednisone. I have been approved for an electric wheelchair by my insurance so hopefully that will make mobility better. Hang in there.Pearl Quote Link to comment Share on other sites More sharing options...
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