Guest guest Posted December 13, 2003 Report Share Posted December 13, 2003 Sandy, Good to hear from you. Mine do also break open and bleed when they are new, and I scratch at them, then they turn hard and leave a flat bump. I'm still guessing Sarcoid, not shingles. Mine came up with Werners granulomas, or something like that, and in my research I found that was related to Sarc. Good luck. I hope they find an answer and a treatment for you. Let me know. Love and Prayers to all, Marla Marla > Hi Marla! - Great to hear from you! I'm glad your Kay is going well. I > was planning to your site when I had that horrible lapse that made PC use > next to impossible. Maybe now I'll treat myself to a Christmas gift! These > bumps may be sarc, may be shingles. They itch a little, and if I mindlessly rub > them they break open. Lovely. They do tend to mostly favor the right side, but > I have had some on the left. And the lacy red rash is all over my neck and > upper chest. Who knows? The Infectious disease doc I saw didn't venture a > guess. He wants to wait on tests since Mayo Clinic will just do everything over > again. I'm so grateful, and nervous, about that trip. > > You take care, Girl! And have a good holiday, OK? > > Love, > Sandy > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://www.elderwyn.com/neurosarcoidosis/chat.php > > Message Archives and Digest Attachment Pictures:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Bookmarks:- > Add a website URL you have found useful. > http://groups.yahoo.com/group/Neurosarcoidosis/links > > Personal Complaints or problems:- > Please email the moderators > mailto:Neurosarcoidosis-owner > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. > To modify your subscription settings please visit:- > http://groups.yahoo.com/group/Neurosarcoidosis/join > > To subscribe email neurosarcoidosis-subscribe > To unsubscribe email neurosarcoidosis-unsubscribe > > The moderators will not be doing it for you! > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > Come stand by my side where I am going, > Take my hand if I should stumble and fall, > It's the strength and love that you share, > That gives me what I need most of all. > - Hoyt Axton > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2004 Report Share Posted February 26, 2004 Jan, Good to hear from you, I am doing good, thank you. I'm having more good days then bad, that's a real plus, if I push it I get tired! if I really push it I have a bad day, but don't we all. Hope you are doing well, think about you often, just never seem to have time to catch up with life, so get behind often, oh well!! Take care and know you are in my prayers, God Bless, Marla -----Original Message-----From: Poohbear Sent: Friday, February 20, 2004 6:20 PMTo: Neurosarcoidosis Subject: Re: Marla Marla, How have you been hun, Sorry I haven't been talking with you much but I have been so sick lately and haven't been posting that much I'm trying to keep up with the post I do read them as much as possible tho'. How are you doing? I hope that you are doing as well as anyone can with this aweful disease. My prayers are as always with you and your family. I just wanted to say hello and see how you were doing. Take care my friend. Love and prayers, Time is a very precious gift of God;so precious that it's only given to usmoment by moment.............. ~~~~~~Amelia Barr Jan~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Hi Bobbie, Happy to hear your dosages are coming down! My doc said I could be on MTX for 18-24 months, I'm just about to the 18 month mark, I will see him in a couple weeks and see what he has to say. I have been off Pred for almost a year already, and I hope/pray I never have to go back on it again!! I am doing better in some areas, but the pain is worse when I have it, I use to be able to take an extra neurontin or two at 100mgs and that would help, then I found myself taking that and 1/2 a vicodan, then I realized it was just the vicodan that was helping. I always start with 1/2, and work up to a whole if I need it, if I take more then that it makes me sick, and I feel really spacey. Every time I try to exercise my pain gets worse, then my family says take it slow, it doesn't matter how slow, it stills hurts later, how about you? Hope you start feeling better with the lower dose, hang in there! God Bless, Marla >Marla, >When I went to see Dr Baughman he thought the MTX was 2x what it >should be. I am on 17 mg of pred- coming down from 40. The >Rheumatologist said he thought I was becoming toxic from the MTX and >that I have been in the sun too much. I am dropping down both the MTX >and Pred. YIPPPPEEE. >Dr Baughman thought I would be on the MTX for 2 years. It drives me >over the edge to think about it- one day at a time. >How are you? It has been a while. >Bobbie > > > > >>Bobbie, >>I'm on 15mg, which is as high as my doc would take me, are you on >> >> >any > > >>other meds, when I started the neurontin and went up to fast, I got >> >> >that > > >>way, but never from the methotrexate?? >>Marla >> >> >> >> >> >> >>>hey gang. >>> >>>I have been taking 25mg Im Methotrexate for about 6 months. I feel >>>like the inside of my skull has been shot full of novocaine. my >>> >>> >head > > >>>is numb I can't think my way out of a box and I am worried about >>>losing consciousness. What dose are people on? I don't know if >>> >>> >it's > > >>>the sarc or the meds but I am very worried. I see my rheumy today >>> >>> >but > > >>>thought i'd ask the experts first...... >>>Bobbie >>> >>> >>> >>> >>> >>>~~~~ *** ~~~ *** ~~~ *** ~~~~ >>>The Neurosarcoidosis Community >>> >>>Live Group Chat:- >>>Mondays & Fridays 10pm EST USA >>>www.mirc.com download the program, follow instructions find Server >>> >>> >Dalnet then type in /join #NSChat. If you need help please notify > at topdat@b... or topdat on yahoo messenger. > > >>>Message Archives:- >>>http://groups.yahoo.com/group/Neurosarcoidosis/messages >>> >>>Members Database:- >>>Listings of locations, phone numbers, and instant messengers. >>>http://groups.yahoo.com/group/Neurosarcoidosis/database >>> >>> Quote Link to comment Share on other sites More sharing options...
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