Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 Since you didn't include your name I am going to call you Fish for now. Dear Fish, I don't have a firm DX but I have had problems with the myoclonic jerking in the past. They put me on some medicine for parkinson's (?) and it did help. I was being treated for MS at that point and the jerking did stop. I am not being treated for anything and it is now starting again. It is a pain. It is not severe right now but if it gets worse I will just call and get the medicine again. What type of work were you doing? We all know how hard it is not to work. I have been home almost two years now and am just starting to realize I may never get to go back, but it is something I pray about. This is a wonderful group (I have been here about a year now). I came for information on the disease but stayed because of the loving and supportive atmosphere here. We are very much like a family and even sometimes have fights, tell strange jokes (look out for rocky mountain oysters and grits!). The moderators and some of the more seasoned " vets " can give you a lot more info than I can, but I can give you support and gross jokes. Take care. Terri G. > > HI ALL YOU WILL HAVE TO ESCUSE ME AS I AM JUST STARTING TO LEARN ON > THE WEB I AM 32 AND SIX MONTHS AGO BEING DIAGNOSED WITH NEURO I HAVE > BEEN PUT ON PREDLISONE AND METHORTREXATE I WONT BORE YOU BUT I WAS > FINE UP UNTILL 2 YEARS AGO SINCE THEN I HAVE HAD A HIP REPLACEMENT > SPENT OVER TWO MONTHS IN HOSPITAL I NOW SUFFER MYCLONIC JERKS UVEITUS > IN MY EYE AND I HAVNT WORKED IN OVER 14 MONTHS I HAVE HAD ONE EEG BUT > NOW IVE GOT TO STAY AWAKE ALL NIGHT TO HAVE ANOTHER ONE TOMMORROW SOME > DOCTOR SAID THAT AVASCULAR NECROSIS WHICH CAUSED ME TO HAVE A NEW HIP > CAN BE CAUSED BY NEUSARC ANY ONE ELSE SUFFER FROM MYCLONIC JERKS ANY > INFO WOULD BE APPRECIATED AND ALSO HOW SERIOS IS THIS DISEASE > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 Since you didn't include your name I am going to call you Fish for now. Dear Fish, I don't have a firm DX but I have had problems with the myoclonic jerking in the past. They put me on some medicine for parkinson's (?) and it did help. I was being treated for MS at that point and the jerking did stop. I am not being treated for anything and it is now starting again. It is a pain. It is not severe right now but if it gets worse I will just call and get the medicine again. What type of work were you doing? We all know how hard it is not to work. I have been home almost two years now and am just starting to realize I may never get to go back, but it is something I pray about. This is a wonderful group (I have been here about a year now). I came for information on the disease but stayed because of the loving and supportive atmosphere here. We are very much like a family and even sometimes have fights, tell strange jokes (look out for rocky mountain oysters and grits!). The moderators and some of the more seasoned " vets " can give you a lot more info than I can, but I can give you support and gross jokes. Take care. Terri G. > > HI ALL YOU WILL HAVE TO ESCUSE ME AS I AM JUST STARTING TO LEARN ON > THE WEB I AM 32 AND SIX MONTHS AGO BEING DIAGNOSED WITH NEURO I HAVE > BEEN PUT ON PREDLISONE AND METHORTREXATE I WONT BORE YOU BUT I WAS > FINE UP UNTILL 2 YEARS AGO SINCE THEN I HAVE HAD A HIP REPLACEMENT > SPENT OVER TWO MONTHS IN HOSPITAL I NOW SUFFER MYCLONIC JERKS UVEITUS > IN MY EYE AND I HAVNT WORKED IN OVER 14 MONTHS I HAVE HAD ONE EEG BUT > NOW IVE GOT TO STAY AWAKE ALL NIGHT TO HAVE ANOTHER ONE TOMMORROW SOME > DOCTOR SAID THAT AVASCULAR NECROSIS WHICH CAUSED ME TO HAVE A NEW HIP > CAN BE CAUSED BY NEUSARC ANY ONE ELSE SUFFER FROM MYCLONIC JERKS ANY > INFO WOULD BE APPRECIATED AND ALSO HOW SERIOS IS THIS DISEASE > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 Since you didn't include your name I am going to call you Fish for now. Dear Fish, I don't have a firm DX but I have had problems with the myoclonic jerking in the past. They put me on some medicine for parkinson's (?) and it did help. I was being treated for MS at that point and the jerking did stop. I am not being treated for anything and it is now starting again. It is a pain. It is not severe right now but if it gets worse I will just call and get the medicine again. What type of work were you doing? We all know how hard it is not to work. I have been home almost two years now and am just starting to realize I may never get to go back, but it is something I pray about. This is a wonderful group (I have been here about a year now). I came for information on the disease but stayed because of the loving and supportive atmosphere here. We are very much like a family and even sometimes have fights, tell strange jokes (look out for rocky mountain oysters and grits!). The moderators and some of the more seasoned " vets " can give you a lot more info than I can, but I can give you support and gross jokes. Take care. Terri G. > > HI ALL YOU WILL HAVE TO ESCUSE ME AS I AM JUST STARTING TO LEARN ON > THE WEB I AM 32 AND SIX MONTHS AGO BEING DIAGNOSED WITH NEURO I HAVE > BEEN PUT ON PREDLISONE AND METHORTREXATE I WONT BORE YOU BUT I WAS > FINE UP UNTILL 2 YEARS AGO SINCE THEN I HAVE HAD A HIP REPLACEMENT > SPENT OVER TWO MONTHS IN HOSPITAL I NOW SUFFER MYCLONIC JERKS UVEITUS > IN MY EYE AND I HAVNT WORKED IN OVER 14 MONTHS I HAVE HAD ONE EEG BUT > NOW IVE GOT TO STAY AWAKE ALL NIGHT TO HAVE ANOTHER ONE TOMMORROW SOME > DOCTOR SAID THAT AVASCULAR NECROSIS WHICH CAUSED ME TO HAVE A NEW HIP > CAN BE CAUSED BY NEUSARC ANY ONE ELSE SUFFER FROM MYCLONIC JERKS ANY > INFO WOULD BE APPRECIATED AND ALSO HOW SERIOS IS THIS DISEASE > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 Hi FUN, My name is and I too have the myoclonus Jerks, sometimes they are so bad I can't hold a glass or take a bite of food. I've poured water/coke on people just sitting beside me. My neurologist doesn't seem to be to concerned about it. They just changed my neuro medication called Neurotin around. it took a couple of days but I do feel that it has helped me. So welcome aboard . I'm really glad you found us this is a very active group and we will help you all we can.. Hugs, -- NEUROSARCOIDOSIS HI ALL YOU WILL HAVE TO ESCUSE ME AS I AM JUST STARTING TO LEARN ONTHE WEB I AM 32 AND SIX MONTHS AGO BEING DIAGNOSED WITH NEURO I HAVEBEEN PUT ON PREDLISONE AND METHORTREXATE I WONT BORE YOU BUT I WASFINE UP UNTILL 2 YEARS AGO SINCE THEN I HAVE HAD A HIP REPLACEMENTSPENT OVER TWO MONTHS IN HOSPITAL I NOW SUFFER MYCLONIC JERKS UVEITUSIN MY EYE AND I HAVNT WORKED IN OVER 14 MONTHS I HAVE HAD ONE EEG BUTNOW IVE GOT TO STAY AWAKE ALL NIGHT TO HAVE ANOTHER ONE TOMMORROW SOMEDOCTOR SAID THAT AVASCULAR NECROSIS WHICH CAUSED ME TO HAVE A NEW HIPCAN BE CAUSED BY NEUSARC ANY ONE ELSE SUFFER FROM MYCLONIC JERKS ANYINFO WOULD BE APPRECIATED AND ALSO HOW SERIOS IS THIS DISEASE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 Hi FUN, My name is and I too have the myoclonus Jerks, sometimes they are so bad I can't hold a glass or take a bite of food. I've poured water/coke on people just sitting beside me. My neurologist doesn't seem to be to concerned about it. They just changed my neuro medication called Neurotin around. it took a couple of days but I do feel that it has helped me. So welcome aboard . I'm really glad you found us this is a very active group and we will help you all we can.. Hugs, -- NEUROSARCOIDOSIS HI ALL YOU WILL HAVE TO ESCUSE ME AS I AM JUST STARTING TO LEARN ONTHE WEB I AM 32 AND SIX MONTHS AGO BEING DIAGNOSED WITH NEURO I HAVEBEEN PUT ON PREDLISONE AND METHORTREXATE I WONT BORE YOU BUT I WASFINE UP UNTILL 2 YEARS AGO SINCE THEN I HAVE HAD A HIP REPLACEMENTSPENT OVER TWO MONTHS IN HOSPITAL I NOW SUFFER MYCLONIC JERKS UVEITUSIN MY EYE AND I HAVNT WORKED IN OVER 14 MONTHS I HAVE HAD ONE EEG BUTNOW IVE GOT TO STAY AWAKE ALL NIGHT TO HAVE ANOTHER ONE TOMMORROW SOMEDOCTOR SAID THAT AVASCULAR NECROSIS WHICH CAUSED ME TO HAVE A NEW HIPCAN BE CAUSED BY NEUSARC ANY ONE ELSE SUFFER FROM MYCLONIC JERKS ANYINFO WOULD BE APPRECIATED AND ALSO HOW SERIOS IS THIS DISEASE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 Hi FUN, My name is and I too have the myoclonus Jerks, sometimes they are so bad I can't hold a glass or take a bite of food. I've poured water/coke on people just sitting beside me. My neurologist doesn't seem to be to concerned about it. They just changed my neuro medication called Neurotin around. it took a couple of days but I do feel that it has helped me. So welcome aboard . I'm really glad you found us this is a very active group and we will help you all we can.. Hugs, -- NEUROSARCOIDOSIS HI ALL YOU WILL HAVE TO ESCUSE ME AS I AM JUST STARTING TO LEARN ONTHE WEB I AM 32 AND SIX MONTHS AGO BEING DIAGNOSED WITH NEURO I HAVEBEEN PUT ON PREDLISONE AND METHORTREXATE I WONT BORE YOU BUT I WASFINE UP UNTILL 2 YEARS AGO SINCE THEN I HAVE HAD A HIP REPLACEMENTSPENT OVER TWO MONTHS IN HOSPITAL I NOW SUFFER MYCLONIC JERKS UVEITUSIN MY EYE AND I HAVNT WORKED IN OVER 14 MONTHS I HAVE HAD ONE EEG BUTNOW IVE GOT TO STAY AWAKE ALL NIGHT TO HAVE ANOTHER ONE TOMMORROW SOMEDOCTOR SAID THAT AVASCULAR NECROSIS WHICH CAUSED ME TO HAVE A NEW HIPCAN BE CAUSED BY NEUSARC ANY ONE ELSE SUFFER FROM MYCLONIC JERKS ANYINFO WOULD BE APPRECIATED AND ALSO HOW SERIOS IS THIS DISEASE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 I have many neurological deficits, and are getting worse. I am considering Methotraxate to try and slow this. I wonder if it is worth trying. Will anything help, really. Does anyone know wht the life expancy is for this disease?> Hi g, Methotrexate might help with some of the symptoms. If you get the injections once a week, it will bypass the liver, and the chance of liver toxicity decreases tremendously. You can take pills-- they do know that 15mg is going to do whatever it'll do to help. More than that doesn't seem to make any additional difference. Plaquenil in addition can help with the cognitive problems also. It's good to start with one drug, see what that one does, then add from there. Most of us have ended up on a multiple drug cocktail- so to speak. I'm on Plaquenil, Methotrexate and Remicade. In our ARCHIVES you'll find numerous posts on the different drugs-- and how they work. Also, Imuran, Arava, and several other immunosupressants are helpful to a degree. You asked if anything really helps. I can tell you that the combo I'm on has made it so that I am no longer having to use oxygen 24/7. It has helped lower my pain from the sarc-induced arthritis throughout my body. It has helped somewhat with my cognitive functions, and my dementia is better. As far as life expectancy-- 6 years ago, I was told that I had 5-7 years to live. I worn out the 5-- so now I'm on year one of the 7 year stretch. I've lived with sarcoidosis for 16 yrs now, and even tho it's not been easy, I'm still independent-- can drive, and take care of some of the general stuff I need to do. Cooking, cleaning, paying bills, etc-- totally depend on how tired I am on any given day. Sometimes things make sense, sometimes they don't. I do believe that with the proper treatment, and combination of care-- that we can live as normal a life as anyone can with chronic progressive illness. It will mean changes, and many of us are now unable to work. But if we listen to our bodies, and rest when we're knocked down because we're still trying to do what we "used" to do-- then we pay for it. There is a great book--- BEYOND CHAOS, ONE MAN'S JOURNEY ALONGSIDE HIS CHRONICALLY ILL WIFE -- that I recommend to most our members. You may really relate--even tho it's you who's ill. It's written so guys "get it." The address for both our ARCHIVES and LINKS-- should be at the bottom of this and every email sent out. A few systems don't post the notes section-- so if you don't see it when you scroll down-- let us know, and we'll send it out via email. Welcome to the group, we're 400+ members all in various stages of sarcoidosis. We've got a tremendous wealth of information and support options with live chats and such. So don't feel like you need to be a stranger. Ask away, and someone will try ot get back to you in short order. (Right now, all 3 moderators and 2 owners are very sick- so it may be a day or so before we get back--but we will.) Sincerely, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 Hi, I am Grove. I have hade Neurosarcid for awhile. I have two large lesions in the cerebral cortex. I have many neurological deficits, and are getting worse. I am considering Methotraxate to try and slow this. I wonder if it is worth trying. Will anything help, really. Does anyone know wht the life expancy is for this disease?> Thanks, Quote Link to comment Share on other sites More sharing options...
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