Guest guest Posted December 8, 2006 Report Share Posted December 8, 2006 Hi Scot, I'm so sorry you had to find us. We are however, a large group of sarcoidians-- and most of us have multi-system sarcoidosis. You asked if the polycystic kidneys could be sarcoidosis. It is very likely that it is sarcoidosis. How is your calcium levels-- are you having problems with kidney stones also? I know well the lymph and spine involvement. The sarc induced arthritis is nasty. Most of us started on treatment of high dose prednisone--80mg every other day, and wean off over a year or more. With multisystem sarc-- it's important to get on some form of immunosupressant. Prednisone is probably where they will want to start you-- but you'll need Plaquenil, or Methotrexate or Imuran also. If you have diabetes, you may want to talk to them about starting on Imuran or Plaquenil and Methotrexate-- so that the blood sugars don't go crazy. I spent 2 1/2 yrs on pred-- with lung and eyes involved, then the sarc went quiet for 5 yrs. It came back with iritis (eyes) and lungs- but had gone systemic to my bones, ligaments, joints, and brain. They tried pred again-- but I couldn't handle it, so we went to Imuran, then to Methotrexate and had to drop the Imuran because it was too hard on my liver. So I'm now on Plaquenil, Methotrex and Remicade. It has made it so that I don't have to be on oxygen 24/7. The arthritis pain has gone way down. What I would do is refer you to the Foundation for Sarcoidosis Research. Read the articles there-- and in our LINKS and ARCHIVES. They will give you a good idea as to what to expect. Sarcoidosis doesn't have to be a life sentence, but it does require that you learn to listen to your body. If it says rest-- you rest. You'll find that the fatigue and body pain are exhausting. Part of the problem is that the pain disrupts your sleep cycles, and that disrupts the seratonin and epinephrine levels in your brain- which controls alot of the pain control functions of our bodies. So your MD may suggest an antidepressant. It will be for pain control, and getting those brain chemicals back in sync. (It'll also help with any clinical depression also.) I hope this helps, and just fire off the questions. It may be a day or so before we get back with you-- as we too are battling this sarc monster. There is alot of members with alot of experience and years of sarc behind them. so you're in good company. Sincerely, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2006 Report Share Posted December 8, 2006 I HAVE BEEN RECENTY DIAGNOSED WITH SARCOIDOSIS IN THE LYMPH NODES, LUNGS, AND SPINAL CORD. ALONG WITH THIS, I HAVE PORPHYRIA, POLYCYSTIC KIDNEY, BLOOD CLOTS, AS WELL AS OTHER PROBLEMS. I WAS WONDERING, AS THE DOCTORS DON'T SEEM TO KNOW ALOT, WHAT I CAN EXPECT IN THE FUTURE, AND WHICH TREATMENTS HAVE WORKED BEST FOR OTHERS? I WAS ALSO WONDERING IF THE CYSTS ON MY KIDNEY MIGHT ACTUALLY BE SARCOID, AS IT HAS NEVER BEEN BIOPSIED. IF ANYONE HAS ANY INFORMATION, I WOULD GREATLY APPRECIATE IT. THANK YOU, SCOT pioneer625@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2006 Report Share Posted December 9, 2006 Welcome Scot. You have come to the best place possible. While I don't want anyone to have this disease it's a comforting feeling to be surrounded by people that know what I'm going through and are willing to share their experiences. We're all in this together for sure. Blessings,Beckyosborne_scot wrote: I HAVE BEEN RECENTY DIAGNOSED WITH SARCOIDOSIS IN THE LYMPH NODES, LUNGS, AND SPINAL CORD. ALONG WITH THIS, I HAVE PORPHYRIA, POLYCYSTIC KIDNEY, BLOOD CLOTS, AS WELL AS OTHER PROBLEMS. I WAS WONDERING, AS THE DOCTORS DON'T SEEM TO KNOW ALOT, WHAT I CAN EXPECT IN THE FUTURE, AND WHICH TREATMENTS HAVE WORKED BEST FOR OTHERS? I WAS ALSO WONDERING IF THE CYSTS ON MY KIDNEY MIGHT ACTUALLY BE SARCOID, AS IT HAS NEVER BEEN BIOPSIED. IF ANYONE HAS ANY INFORMATION, I WOULD GREATLY APPRECIATE IT. THANK YOU, SCOT pioneer625 (AT) aol (DOT) com Everyone is raving about the all-new Yahoo! Mail beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2006 Report Share Posted December 9, 2006 I've said it before but feel compelled to say it again. Thank you Tracie for helping all of us. May God always Bless you,Beckytiodaat@... wrote: Hi Scot, I'm so sorry you had to find us. We are however, a large group of sarcoidians-- and most of us have multi-system sarcoidosis. You asked if the polycystic kidneys could be sarcoidosis. It is very likely that it is sarcoidosis. How is your calcium levels-- are you having problems with kidney stones also? I know well the lymph and spine involvement. The sarc induced arthritis is nasty. Most of us started on treatment of high dose prednisone--80mg every other day, and wean off over a year or more. With multisystem sarc-- it's important to get on some form of immunosupressant. Prednisone is probably where they will want to start you-- but you'll need Plaquenil, or Methotrexate or Imuran also. If you have diabetes, you may want to talk to them about starting on Imuran or Plaquenil and Methotrexate-- so that the blood sugars don't go crazy. I spent 2 1/2 yrs on pred-- with lung and eyes involved, then the sarc went quiet for 5 yrs. It came back with iritis (eyes) and lungs- but had gone systemic to my bones, ligaments, joints, and brain. They tried pred again-- but I couldn't handle it, so we went to Imuran, then to Methotrexate and had to drop the Imuran because it was too hard on my liver. So I'm now on Plaquenil, Methotrex and Remicade. It has made it so that I don't have to be on oxygen 24/7. The arthritis pain has gone way down. What I would do is refer you to the Foundation for Sarcoidosis Research. Read the articles there-- and in our LINKS and ARCHIVES. They will give you a good idea as to what to expect. Sarcoidosis doesn't have to be a life sentence, but it does require that you learn to listen to your body. If it says rest-- you rest. You'll find that the fatigue and body pain are exhausting. Part of the problem is that the pain disrupts your sleep cycles, and that disrupts the seratonin and epinephrine levels in your brain- which controls alot of the pain control functions of our bodies. So your MD may suggest an antidepressant. It will be for pain control, and getting those brain chemicals back in sync. (It'll also help with any clinical depression also.) I hope this helps, and just fire off the questions. It may be a day or so before we get back with you-- as we too are battling this sarc monster. There is alot of members with alot of experience and years of sarc behind them. so you're in good company. Sincerely, Tracie NS Co-owner/moderator Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2006 Report Share Posted December 9, 2006 Hey Scot Some people in the group have been battling sarcoidosis for years, others like you and myself are fairly new to all of this. Sarcoidosis in the lymph nodes and lungs is the " classic " version of the illness, and from there you can get all kinds of variations on different parts of your body (or none, for the lucky ones). Interesting with the cyst though, as a cyst was the only noteworthy feature they found in an MRI of my brain a year ago after a grand mal seizure (that was before I was diagnosed with sarcoidosis). They've just done a new MRI on my brain (after a second seizure 2 months ago) and I'm speaking to Neuro on Monday to get the results. I don't know what I'm more afraid of now - that they find something unexpected, or that they finally confirm neurosarcoidosis... I've read several times that neurosarcoidosis associated with seizures " doesn't have a very good prognosis " - with no further explanation. Kinda leaves you feeling like a nervous wreck. Especially when you have a 7 month old child, a hefty mortgage, and can no longer get life or health insurance because of the illness. Anyway Scot, take heart that there are many of us " newbies " in the same boat - feeling shocked and scared by this new illness. But there is a lot of hope, support and good advice that we can gain here from the people who have been fighting it for years. All the best, /D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2006 Report Share Posted December 10, 2006 THANK YOU ALL FOR YOUR HELP. I WISH YOU ALL THE BEST, AND I AM GOING TO MY PULMONOLIGIST ON TUESDAY. HE IS SUPPOSED TO LET ME KNOW ABOUT STARTING TREATMENTS, AND I AM GOING TO MENTION SOME OF THE THINGS EVERYONE HAS MENTIONED. THANK YOU AGAIN FOR YOUR HELP, AND I WILL LET YOU KNOW THE OUTCOME.Mac Tosh wrote: I've said it before but feel compelled to say it again. Thank you Tracie for helping all of us. May God always Bless you,Beckytiodaat (AT) aol (DOT) com wrote: Hi Scot,I'm so sorry you had to find us. We are however, a large group of sarcoidians-- and most of us have multi-system sarcoidosis. You asked if the polycystic kidneys could be sarcoidosis. It is very likely that it is sarcoidosis. How is your calcium levels-- are you having problems with kidney stones also?I know well the lymph and spine involvement. The sarc induced arthritis is nasty.Most of us started on treatment of high dose prednisone--80mg every other day, and wean off over a year or more. With multisystem sarc-- it's important to get on some form of immunosupressant. Prednisone is probably where they will want to start you-- but you'll need Plaquenil, or Methotrexate or Imuran also. If you have diabetes, you may want to talk to them about starting on Imuran or Plaquenil and Methotrexate-- so that the blood sugars don't go crazy. I spent 2 1/2 yrs on pred-- with lung and eyes involved, then the sarc went quiet for 5 yrs. It came back with iritis (eyes) and lungs- but had gone systemic to my bones, ligaments, joints, and brain. They tried pred again-- but I couldn't handle it, so we went to Imuran, then to Methotrexate and had to drop the Imuran because it was too hard on my liver. So I'm now on Plaquenil, Methotrex and Remicade. It has made it so that I don't have to be on oxygen 24/7. The arthritis pain has gone way down.What I would do is refer you to the Foundation for Sarcoidosis Research. Read the articles there-- and in our LINKS and ARCHIVES. They will give you a good idea as to what to expect.Sarcoidosis doesn't have to be a life sentence, but it does require that you learn to listen to your body. If it says rest-- you rest. You'll find that the fatigue and body pain are exhausting. Part of the problem is that the pain disrupts your sleep cycles, and that disrupts the seratonin and epinephrine levels in your brain- which controls alot of the pain control functions of our bodies. So your MD may suggest an antidepressant. It will be for pain control, and getting those brain chemicals back in sync. (It'll also help with any clinical depression also.) I hope this helps, and just fire off the questions. It may be a day or so before we get back with you-- as we too are battling this sarc monster. There is alot of members with alot of experience and years of sarc behind them. so you're in good company.Sincerely,TracieNS Co-owner/moderator Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and get things done faster. Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 My understanding is that sarcoidosis is usually very responsive to steroids so the fact that your NS doesn't respond at all is a little confusing to me. Sarcoidosis inflammation may decrease with Prednisone somewhat. What they now know is that for all of us that have been on prednisone, and "supposedly" went into remission, only to have the sarc come back with a vengence-- is that prednisone masks alot of the symptoms. When you take it away, the symptoms generally do come back. For us, they came back as NS and sarcoid induced arthritis, along with lymph and bone pain. Prednsione does seem to be helpful for single system sarcoidosis-- like if you have only pulmonary sarcoidosis. But the minute you add eyes, arthritis, lymph or vasculitis, or any of hte neuro symptoms-- screw the prednisone, and look at any of the alternative steroid sparing immunosupressants. Imuran, Methotrexate, Plaquenil, Arava-- and then if those don't work, or you find you need a combination (and most of us do) MTX, Plaquenil and the BRM's-- Enbrel, Humira or Remicade do seem to be helping-- if you don't have an allergic reaction to them. One of the drugs they are using is Interferon --I don't remember which one-- but it's for idiopathic pulmonary fibrosis. I know that Baumann M.D. at Univ Of Nebraska- (Pulm and Critical Care Medicine) is using this. He is the one who first diagnosed my pulm sarc, and he did tell me that if it ever relapsed, to not let them put me on prednisone-- that the side effects of diabetes, adrenal shutdown, psych issues, where to prevalent and creating more of a problem than other options. My pulm (Dr. B had moved to Nebraska) insisted we give it a second try-- and surprise-- we ended dealing with exactly what Dr. B said would happen. Hmmm. For me, Plaquenil takes care of my lungs and some of the dementia. The MTX takes care of the lungs and lymphs--and the Remicade has made it possible for me to get off my oxygen 24/7- and the muscle and joint pains from the arthritis have decreased alot. I'm also clearer thinking. I still get the rebound lymph pain and the bone pain, but I find that with ample hydration and my trusty MSM powder-- that I can keep it at a minimum. The down side is that I'm exhausted from my immune system being so wiped out-- so I do have to really watch how much I try to do. The good side is that my pain isn't requiring pain meds. So it is a tradeoff. Take care, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 What kind of chemo are they using? It's a hard one, but a combination of several immunosupressants is what most of us need. I did another post just a few minutes ago, where I explained that MTX (methotrexate), Plaquenil and Remicade are what has worked for me. Take care, and know you are among friends fighting the same battle. Sincerely, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2007 Report Share Posted January 21, 2007 I have sarcoidosis in my lungs, spleen, and brain. They are trying chemotherapy to shrink down the areas in my brain to see if it works. I am really scared as I think they are guessing as to how to treat this. Just hearing from you all with your point of view and knowledge helps so much. Thank you so much. I don't feel so alone. > > In a message dated 1/20/07 3:38:34 PM Pacific Standard Time, > wendy_cidp@... writes: > > > > My understanding is that sarcoidosis is usually > > very responsive to steroids so the fact that your NS doesn't respond > > at all is a little confusing to me. > > Sarcoidosis inflammation may decrease with Prednisone somewhat. What they > now know is that for all of us that have been on prednisone, and " supposedly " > went into remission, only to have the sarc come back with a vengence-- is that > prednisone masks alot of the symptoms. > When you take it away, the symptoms generally do come back. For us, they came > back as NS and sarcoid induced arthritis, along with lymph and bone pain. > Prednsione does seem to be helpful for single system sarcoidosis-- like if > you have only pulmonary sarcoidosis. But the minute you add eyes, arthritis, > lymph or vasculitis, or any of hte neuro symptoms-- screw the prednisone, and > look at any of the alternative steroid sparing immunosupressants. Imuran, > Methotrexate, Plaquenil, Arava-- and then if those don't work, or you find you need > a combination (and most of us do) MTX, Plaquenil and the BRM's-- Enbrel, > Humira or Remicade do seem to be helping-- if you don't have an allergic reaction > to them. > > One of the drugs they are using is Interferon --I don't remember which one-- > but it's for idiopathic pulmonary fibrosis. I know that Baumann M.D. > at Univ Of Nebraska- (Pulm and Critical Care Medicine) is using this. He is > the one who first diagnosed my pulm sarc, and he did tell me that if it ever > relapsed, to not let them put me on prednisone-- that the side effects of > diabetes, adrenal shutdown, psych issues, where to prevalent and creating more of a > problem than other options. > > My pulm (Dr. B had moved to Nebraska) insisted we give it a second try-- and > surprise-- we ended dealing with exactly what Dr. B said would happen. Hmmm. > > For me, Plaquenil takes care of my lungs and some of the dementia. The MTX > takes care of the lungs and lymphs--and the Remicade has made it possible for > me to get off my oxygen 24/7- and the muscle and joint pains from the arthritis > have decreased alot. I'm also clearer thinking. I still get the rebound > lymph pain and the bone pain, but I find that with ample hydration and my trusty > MSM powder-- that I can keep it at a minimum. > > The down side is that I'm exhausted from my immune system being so wiped > out-- so I do have to really watch how much I try to do. The good side is that my > pain isn't requiring pain meds. So it is a tradeoff. > > Take care, > Tracie > NS Co-owner/moderator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2007 Report Share Posted January 21, 2007 Can someone explain to me the different types of medications used to treat neurosarcoidosis? I know that steroids are generally the first line of defense, but a lot of other drugs have been mentioned also. As I said previously, my fiance was put on cellcept, an immunosuppresant, because was nonresponsive to the high dose steroids. What is the difference between chemo and an immunosuppresant? Although it is not to the power of chemo for cancer, it seems that these types of drugs are also chemotherapy in nature. Sorry for such a long post, I am just kinda confused and ignorant to this and want to learn as much as possible. > > What kind of chemo are they using? > > It's a hard one, but a combination of several immunosupressants is what most > of us need. > > I did another post just a few minutes ago, where I explained that MTX > (methotrexate), Plaquenil and Remicade are what has worked for me. > > Take care, and know you are among friends fighting the same battle. > > Sincerely, > Tracie > NS Co-owner/moderator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2007 Report Share Posted January 21, 2007 , You've come to the right place. We have over 400 members now, and we've shared alot of information and trials over the last several years. In our ARCHIVES and LINKS-- scroll down, the addresses are at the bottom of this and every email-- have numerous articals and emails that explain so much about NS. Whatever questions, concerns-- yell em out, and we'll see what we can find in the way of answers. It may take a day or so before someone gets back to you-- the owners and moderators are also sick with this disease, and so we "tag" team-- and try to get to your questions as quickly as possible. And we will get to them-- if not, yell again! Welcome to the gang, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2007 Report Share Posted January 21, 2007 It just showed up on some CT scans I had done. I think it had been there a while. In Neurosarcoidosis , Debbie wrote: > > Hi Lori, > I was wondering, you had said your sarcoid went to your spleen. Did you have any symptoms with that? Or did that just happen to show up via another test for something else? > > Debbie T. > Co-Moderator > > Lori Pavey wrote: , I was diagnosed about two years ago with pulmonary sarcoidosis. It > then went to my spleen. Now I have started the last three months or so with > vision problems, losing my vision, facial numbness, and terrible headaches. > They did an MRI of the brain and found over twenty 5 mm areas of sarcoidosis > in my brain. They started emergent chemotherapy and said they will do at > least six cycles with a brain MRI after the second cycle to see if it is > working. They just want to get these areas shrunk down. I think it has been > in my brain for a long time also to have that many places. I feel like they > are trying chemotherapy becasue they don't know what else to do. Hopefully > they do. I was on Prednisone therapy and did not respond, then > Methotrexate, Imuran, Plaquenil, and now this. I don't know a lot about it > either right now, but will be happy to keep you informed. Hopefully you > respond great to the Methotrexate. I think I am a really advanced case. > Would love to hear from you again, it really helps to talk about it with > someone going through the same thing. Lori > > > > >I am new to this group. Just found you today. Although I would not > >wish this thing on anyone it was nice to find someone who actually has > >neurosarcoidosis. I have chated with alot of people who have sarcoids > >but not many who have it in their brain like i do. I have it in two > >places in my brain right now and am hoping that it doesn't decide to > >move to any place else. I have had it for about 8 or 9 years but it > >took them 7 years to diagnose. I feel like i need to learn more about > >what i have so i can do more to keep myself as well and strong as > >possible. I have pain in my head and my right side goes numb. I lose > >my balance and my memory isn't so good. Some days are better some are > >not so good. I am currently on methotrexate and they are weening me > >off of predisone. Done to 10 mgs a day. > >Any way thanks for this group and bless you all > > > > > > _________________________________________________________________ > Laugh, share and connect with Windows Live Messenger > http://clk.atdmt.com/MSN/go/msnnkwme0020000001msn/direct/01/? href=http://imagine-msn.com/messenger/launch80/default.aspx?locale=en- us&source=hmtagline > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST > SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST > OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST > SUNDAY 4PM EST. 3PM CENTRAL. 1PM PST > > CHATROOM LINK: http://www.emxpc.net/chat/index.php > > 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...
Guest guest Posted January 23, 2007 Report Share Posted January 23, 2007 Ok thanks for the reply...loripavey wrote: It just showed up on some CT scans I had done. I think it had been there a while. In Neurosarcoidosis , Debbie wrote:>> Hi Lori,> I was wondering, you had said your sarcoid went to your spleen. Did you have any symptoms with that? Or did that just happen to show up via another test for something else?> > Debbie T.> Co-Moderator> > Lori Pavey wrote: , I was diagnosed about two years ago with pulmonary sarcoidosis. It > then went to my spleen. Now I have started the last three months or so with > vision problems, losing my vision, facial numbness, and terrible headaches. > They did an MRI of the brain and found over twenty 5 mm areas of sarcoidosis > in my brain. They started emergent chemotherapy and said they will do at > least six cycles with a brain MRI after the second cycle to see if it is > working. They just want to get these areas shrunk down. I think it has been > in my brain for a long time also to have that many places. I feel like they > are trying chemotherapy becasue they don't know what else to do. Hopefully > they do. I was on Prednisone therapy and did not respond, then > Methotrexate, Imuran, Plaquenil, and now this. I don't know a lot about it > either right now, but will be happy to keep you informed. Hopefully you > respond great to the Methotrexate. I think I am a really advanced case. > Would love to hear from you again, it really helps to talk about it with > someone going through the same thing. Lori> > >> >I am new to this group. Just found you today. Although I would not> >wish this thing on anyone it was nice to find someone who actually has> >neurosarcoidosis. I have chated with alot of people who have sarcoids> >but not many who have it in their brain like i do. I have it in two> >places in my brain right now and am hoping that it doesn't decide to> >move to any place else. I have had it for about 8 or 9 years but it> >took them 7 years to diagnose. I feel like i need to learn more about> >what i have so i can do more to keep myself as well and strong as> >possible. I have pain in my head and my right side goes numb. I lose> >my balance and my memory isn't so good. Some days are better some are> >not so good. I am currently on methotrexate and they are weening me> >off of predisone. Done to 10 mgs a day.> >Any way thanks for this group and bless you all> >> >> > _________________________________________________________________> Laugh, share and connect with Windows Live Messenger > http://clk.atdmt.com/MSN/go/msnnkwme0020000001msn/direct/01/?href=http://imagine-msn.com/messenger/launch80/default.aspx?locale=en-us & source=hmtagline> > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST > SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST> OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST> SUNDAY 4PM EST. 3PM CENTRAL. 1PM PST> > CHATROOM LINK: http://www.emxpc.net/chat/index.php > > 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...
Guest guest Posted January 27, 2007 Report Share Posted January 27, 2007 , Welcome to our family, you will receive a lot of support here, there are many of us much like you. Please feel free to ask questions. I just want you to know this has been my biggest support since my dx too. The moderators are very, very good at their job, lost of good information and support and love her. God Bless Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of kap2569 Sent: Saturday, January 20, 2007 10:57 PM To: Neurosarcoidosis Subject: neurosarcoidosis I am new to this group. Just found you today. Although I would not wish this thing on anyone it was nice to find someone who actually has neurosarcoidosis. I have chated with alot of people who have sarcoids but not many who have it in their brain like i do. I have it in two places in my brain right now and am hoping that it doesn't decide to move to any place else. I have had it for about 8 or 9 years but it took them 7 years to diagnose. I feel like i need to learn more about what i have so i can do more to keep myself as well and strong as possible. I have pain in my head and my right side goes numb. I lose my balance and my memory isn't so good. Some days are better some are not so good. I am currently on methotrexate and they are weening me off of predisone. Done to 10 mgs a day. Any way thanks for this group and bless you all Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2007 Report Share Posted January 27, 2007 Thank you, I feel like i am hanging from a tree branch and waiting for it to break. It took them so long to diagnose me and i was sure that when they figured out what was wrong with me they could fix it. It is difficult for me to accept that this is as good as it gets and they can't fix me. I am sure that is typical, but some times i still catch myself thinking that i will be well. Thanks for your kind words. huggs to you karenMarla Bramer wrote: , Welcome to our family, you will receive a lot of support here, there are many of us much like you. Please feel free to ask questions. I just want you to know this has been my biggest support since my dx too. The moderators are very, very good at their job, lost of good information and support and love her. God Bless Marla Bramer "Faith sees the invisible, believes the incredible and receives the impossible" From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of kap2569Sent: Saturday, January 20, 2007 10:57 PMTo: Neurosarcoidosis Subject: neurosarcoidosis I am new to this group. Just found you today. Although I would not wish this thing on anyone it was nice to find someone who actually has neurosarcoidosis. I have chated with alot of people who have sarcoids but not many who have it in their brain like i do. I have it in two places in my brain right now and am hoping that it doesn't decide to move to any place else. I have had it for about 8 or 9 years but it took them 7 years to diagnose. I feel like i need to learn more about what i have so i can do more to keep myself as well and strong as possible. I have pain in my head and my right side goes numb. I lose my balance and my memory isn't so good. Some days are better some are not so good. I am currently on methotrexate and they are weening me off of predisone. Done to 10 mgs a day.Any way thanks for this group and bless you all It's here! Your new message!Get new email alerts with the free Yahoo! Toolbar. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2007 Report Share Posted January 28, 2007 , I think what happens we just the meaning “well”. I have some good days and some bad days, but I feel better then I did at my worse, so then I think I’m feeling pretty “well” these days , does that make sense? I am thankful for my good days and pray for more good then bad days, this is what I wish for you. Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of karen phillips Sent: Saturday, January 27, 2007 5:56 PM To: Neurosarcoidosis Subject: RE: neurosarcoidosis Thank you, I feel like i am hanging from a tree branch and waiting for it to break. It took them so long to diagnose me and i was sure that when they figured out what was wrong with me they could fix it. It is difficult for me to accept that this is as good as it gets and they can't fix me. I am sure that is typical, but some times i still catch myself thinking that i will be well. Thanks for your kind words. huggs to you karen Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: , Welcome to our family, you will receive a lot of support here, there are many of us much like you. Please feel free to ask questions. I just want you to know this has been my biggest support since my dx too. The moderators are very, very good at their job, lost of good information and support and love her. God Bless Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of kap2569 Sent: Saturday, January 20, 2007 10:57 PM To: Neurosarcoidosis Subject: neurosarcoidosis I am new to this group. Just found you today. Although I would not wish this thing on anyone it was nice to find someone who actually has neurosarcoidosis. I have chated with alot of people who have sarcoids but not many who have it in their brain like i do. I have it in two places in my brain right now and am hoping that it doesn't decide to move to any place else. I have had it for about 8 or 9 years but it took them 7 years to diagnose. I feel like i need to learn more about what i have so i can do more to keep myself as well and strong as possible. I have pain in my head and my right side goes numb. I lose my balance and my memory isn't so good. Some days are better some are not so good. I am currently on methotrexate and they are weening me off of predisone. Done to 10 mgs a day. Any way thanks for this group and bless you all It's here! Your new message! Get new email alerts with the free Yahoo! Toolbar. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2007 Report Share Posted January 29, 2007 I totally agree with you. I am so much better that i was last April. And i have been better for a while. But then i get scared because up until now when i would feel well i would end up getting sick again. Or back in the hospital. So, it's kind of scary and wonderful at the same time. I am also grateful that right now I am having more good days then bad days. I can actually get up in the morning and work a few hours a day. I am trying to take care of my elderly mother but, i am going to get someone to come in to help me. I am terrified that I will get sick and there will be noone to take care of her. I guess we just have to take life one day at a time and enjoy each good day. My main goal right now is to be able to help someone else with this disease. I figure that if i can help one person then me having this makes sense. The more people that i can help, teach or console, i feel like i am paying back all of the wonderful people who had helped, taught or consoled me. Thank you for your kindness, you will be in my prayers. huggs karenMarla Bramer wrote: , I think what happens we just the meaning “well”. I have some good days and some bad days, but I feel better then I did at my worse, so then I think I’m feeling pretty “well” these days , does that make sense? I am thankful for my good days and pray for more good then bad days, this is what I wish for you. Marla Bramer "Faith sees the invisible, believes the incredible and receives the impossible" From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of karen phillipsSent: Saturday, January 27, 2007 5:56 PMTo: Neurosarcoidosis Subject: RE: neurosarcoidosis Thank you, I feel like i am hanging from a tree branch and waiting for it to break. It took them so long to diagnose me and i was sure that when they figured out what was wrong with me they could fix it. It is difficult for me to accept that this is as good as it gets and they can't fix me. I am sure that is typical, but some times i still catch myself thinking that i will be well. Thanks for your kind words. huggs to you karenMarla Bramer <mebramer (AT) gmail (DOT) com> wrote: , Welcome to our family, you will receive a lot of support here, there are many of us much like you. Please feel free to ask questions. I just want you to know this has been my biggest support since my dx too. The moderators are very, very good at their job, lost of good information and support and love her. God Bless Marla Bramer "Faith sees the invisible, believes the incredible and receives the impossible" From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of kap2569Sent: Saturday, January 20, 2007 10:57 PMTo: Neurosarcoidosis Subject: neurosarcoidosis I am new to this group. Just found you today. Although I would not wish this thing on anyone it was nice to find someone who actually has neurosarcoidosis. I have chated with alot of people who have sarcoids but not many who have it in their brain like i do. I have it in two places in my brain right now and am hoping that it doesn't decide to move to any place else. I have had it for about 8 or 9 years but it took them 7 years to diagnose. I feel like i need to learn more about what i have so i can do more to keep myself as well and strong as possible. I have pain in my head and my right side goes numb. I lose my balance and my memory isn't so good. Some days are better some are not so good. I am currently on methotrexate and they are weening me off of predisone. Done to 10 mgs a day.Any way thanks for this group and bless you all It's here! Your new message!Get new email alerts with the free Yahoo! Toolbar. Don't pick lemons. See all the new 2007 cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2007 Report Share Posted January 29, 2007 , I am glad that you are getting help with your Mother, even if you feel good enough to take care of her it will wear you down, the help will give you a break and someone who can help more if you don’t feel up to it. One of the problems we all have, is that when we feel better we do too much and end up sick again, so be careful and good to yourself so you don’t end up with a flare! Here’s praying good days for everyoneJ Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of karen phillips Sent: Monday, January 29, 2007 7:52 AM To: Neurosarcoidosis Subject: RE: neurosarcoidosis I totally agree with you. I am so much better that i was last April. And i have been better for a while. But then i get scared because up until now when i would feel well i would end up getting sick again. Or back in the hospital. So, it's kind of scary and wonderful at the same time. I am also grateful that right now I am having more good days then bad days. I can actually get up in the morning and work a few hours a day. I am trying to take care of my elderly mother but, i am going to get someone to come in to help me. I am terrified that I will get sick and there will be noone to take care of her. I guess we just have to take life one day at a time and enjoy each good day. My main goal right now is to be able to help someone else with this disease. I figure that if i can help one person then me having this makes sense. The more people that i can help, teach or console, i feel like i am paying back all of the wonderful people who had helped, taught or consoled me. Thank you for your kindness, you will be in my prayers. huggs karen Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: , I think what happens we just the meaning “well”. I have some good days and some bad days, but I feel better then I did at my worse, so then I think I’m feeling pretty “well” these days , does that make sense? I am thankful for my good days and pray for more good then bad days, this is what I wish for you. Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of karen phillips Sent: Saturday, January 27, 2007 5:56 PM To: Neurosarcoidosis Subject: RE: neurosarcoidosis Thank you, I feel like i am hanging from a tree branch and waiting for it to break. It took them so long to diagnose me and i was sure that when they figured out what was wrong with me they could fix it. It is difficult for me to accept that this is as good as it gets and they can't fix me. I am sure that is typical, but some times i still catch myself thinking that i will be well. Thanks for your kind words. huggs to you karen Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: , Welcome to our family, you will receive a lot of support here, there are many of us much like you. Please feel free to ask questions. I just want you to know this has been my biggest support since my dx too. The moderators are very, very good at their job, lost of good information and support and love her. God Bless Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of kap2569 Sent: Saturday, January 20, 2007 10:57 PM To: Neurosarcoidosis Subject: neurosarcoidosis I am new to this group. Just found you today. Although I would not wish this thing on anyone it was nice to find someone who actually has neurosarcoidosis. I have chated with alot of people who have sarcoids but not many who have it in their brain like i do. I have it in two places in my brain right now and am hoping that it doesn't decide to move to any place else. I have had it for about 8 or 9 years but it took them 7 years to diagnose. I feel like i need to learn more about what i have so i can do more to keep myself as well and strong as possible. I have pain in my head and my right side goes numb. I lose my balance and my memory isn't so good. Some days are better some are not so good. I am currently on methotrexate and they are weening me off of predisone. Done to 10 mgs a day. Any way thanks for this group and bless you all It's here! Your new message! Get new email alerts with the free Yahoo! Toolbar. Don't pick lemons. See all the new 2007 cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
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