Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Alice, have you talked with your neurologist about this? Depakote & other anti-seizure drugs help with a variety of sarc symptoms, but you need to be sure you aren't having a drug interaction or other cause. Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: aliceminyard@...Date: Wed, 27 May 2009 14:50:25 +0000Subject: spasms I have these jerking spells, it ffects my whole body, some are worse than others. I was diagnosed with neuro-sarc a year ago.Of course I hve it in my lungs, lymph nodes, bones, and joints. However the jerking spells are getting worse, I'm on 40 mg of prednisone, 20 mg. of methatrexate, and many more meds. My question someone suggested depacote for the jerking spells.Hs anyone ever tried this? I walk with a walker and even with that I still fall if the spells are bad.I have them all day long. Open to suggestions.ThanksAlice Insert movie times and more without leaving Hotmail®. See how. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Alice, Sorry to hear about your spells. I had the same thing until I dropped from 60mg a day down to 20 mg of Prednisone a day. Right now I am on 20mg of Prednisone and 50mg of Imuran not to mention the others. I think I was having a drug interaction. Heck when I fell I would have situations were I could not move a muscle for 2 to 15 minutes. I would talk to to your Doctors and see if you are having a drug interaction. I have been dx with neuro for 12 months and that includes a 3 month remission. Last 6 months have gotten me to love and hate prednisone. I hope this helps you some. I am sure Tracie and Rose will answer you also soon the have real good and sage advice I would listen them if I was you. Alice may you br blessed with many Pain Free and loving days. Greg aka Krumdawg > > I have these jerking spells, it ffects my whole body, some are worse than others. I was diagnosed with neuro-sarc a year ago.Of course I hve it in my lungs, lymph nodes, bones, and joints. However the jerking spells are getting worse, I'm on 40 mg of prednisone, 20 mg. of methatrexate, and many more meds. My question someone suggested depacote for the jerking spells.Hs anyone ever tried this? I walk with a walker and even with that I still fall if the spells are bad.I have them all day long. Open to suggestions. > Thanks > Alice > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Alice, Rose is right, you need to get this checked out. It could be a vitamin or mineral defiency, it could be that you are having some seizures. I have severe restless leg syndrome. so much so that they are actually watching to see if it is early onset Parkinsons. I also have the hand and shoulder tremors. I don't show the MRI results that would show the brain issues with Parkinsons (this is one I need to learn more about, my Fa-in Law died of Park and my dad has it and is now late stage) There is a link between how our bodies assimilate B vitamins and Parkinsons- and that alone leads me to believe that alot of this is vitamin deficient. With being on MTX, do they have you on Folic Acid? If not- get the doc to write a script for 1mg daily. Hope this helps, Tracie NS Co-owner/moderator Subject: Re: spasmsTo: Neurosarcoidosis Date: Wednesday, May 27, 2009, 12:48 PM Alice,Sorry to hear about your spells. I had the same thing until I dropped from 60mg a day down to 20 mg of Prednisone a day. Right now I am on 20mg of Prednisone and 50mg of Imuran not to mention the others. I think I was having a drug interaction. Heck when I fell I would have situations were I could not move a muscle for 2 to 15 minutes. I would talk to to your Doctors and see if you are having a drug interaction. I have been dx with neuro for 12 months and that includes a 3 month remission. Last 6 months have gotten me to love and hate prednisone. I hope this helps you some. I am sure Tracie and Rose will answer you also soon the have real good and sage advice I would listen them if I was you. Alice may you br blessed with many Pain Free and loving days.Greg aka Krumdawg>> I have these jerking spells, it ffects my whole body, some are worse than others. I was diagnosed with neuro-sarc a year ago.Of course I hve it in my lungs, lymph nodes, bones, and joints. However the jerking spells are getting worse, I'm on 40 mg of prednisone, 20 mg. of methatrexate, and many more meds. My question someone suggested depacote for the jerking spells.Hs anyone ever tried this? I walk with a walker and even with that I still fall if the spells are bad.I have them all day long. Open to suggestions.> Thanks> Alice> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Hello Alice...I have the jerking also mostly at night my neuro calls them spasms and I take lorazepam. It's really helpful but it puts me to sleep. -- spasms I have these jerking spells, it ffects my whole body, some are worse than others. I was diagnosed with neuro-sarc a year ago.Of course I hve it in my lungs, lymph nodes, bones, and joints. However the jerking spells are getting worse, I'm on 40 mg of prednisone, 20 mg. of methatrexate, and many more meds. My question someone suggested depacote for the jerking spells.Hs anyone ever tried this? I walk with a walker and even with that I still fall if the spells are bad.I have them all day long. Open to suggestions. Thanks Alice ------------------------------------ ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community CHATROOM LINK: http://www.sarcbuddies.com -- Open all the time..... 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 May 27, 2009 Report Share Posted May 27, 2009 Thanks all for your replys. I was having these spells with alot of numbness before I waas diagnosed with sarcoidosis. I actually started having numbness about five years ago, I started having the jerking spells about three months before I was diagnosed with Sarc. My neuro said that the meds that the pulmanary Dr. had me on should take care of it. However it has got worse in the last few weeks. Also I do have some calcified places on my brain and a spot that she is watching with mris I go back in June and I thought someone might have some suggestions that I can talk with her about. > > Hello Alice...I have the jerking also mostly at night my neuro calls them > spasms and I take lorazepam. It's really helpful but it puts me to sleep. > > > > -- spasms > > I have these jerking spells, it ffects my whole body, some are worse than > others. I was diagnosed with neuro-sarc a year ago.Of course I hve it in my > lungs, lymph nodes, bones, and joints. However the jerking spells are > getting worse, I'm on 40 mg of prednisone, 20 mg. of methatrexate, and many > more meds. My question someone suggested depacote for the jerking spells.Hs > anyone ever tried this? I walk with a walker and even with that I still fall > if the spells are bad.I have them all day long. Open to suggestions. > Thanks > Alice > > > > ------------------------------------ > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > > CHATROOM LINK: http://www.sarcbuddies.com -- Open all the time..... > > 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 May 27, 2009 Report Share Posted May 27, 2009 Here is an article that I've sent multiple times and is one that I highly reommend you bookmark or put in your favorites! It is from Epilepsy Professionals and addresses sarvcoidosis. http://professionals.epilepsy.com/page/inflammatory_sardcoidosis.html PRINT THIS ARTICLE OUT AND TAKE IT WITH YOU. Here is another one that suggests use of Plaquenil with MTX for spasms. Come to think of it, that is part of the reason they put me on it. Also, check yourself and make sure you aren't dehydrated, as that causes muscle spasms. A sleep study may also be in order-- to make sure you don't have sleep apnea and restless leg syndrome. http://archneur.ama-assn.org/cgi/content/full/55/9/1248 Subject: Re: spasmsTo: Neurosarcoidosis Date: Wednesday, May 27, 2009, 4:30 PM Thanks all for your replys. I was having these spells with alot of numbness before I waas diagnosed with sarcoidosis. I actually started having numbness about five years ago, I started having the jerking spells about three months before I was diagnosed with Sarc. My neuro said that the meds that the pulmanary Dr. had me on should take care of it. However it has got worse in the last few weeks. Also I do have some calcified places on my brain and a spot that she is watching with mris I go back in June and I thought someone might have some suggestions that I can talk with her about. >> Hello Alice...I have the jerking also mostly at night my neuro calls them> spasms and I take lorazepam. It's really helpful but it puts me to sleep.> > > > -- spasms> > I have these jerking spells, it ffects my whole body, some are worse than> others. I was diagnosed with neuro-sarc a year ago.Of course I hve it in my> lungs, lymph nodes, bones, and joints. However the jerking spells are> getting worse, I'm on 40 mg of prednisone, 20 mg. of methatrexate, and many> more meds. My question someone suggested depacote for the jerking spells.Hs> anyone ever tried this? I walk with a walker and even with that I still fall> if the spells are bad.I have them all day long. Open to suggestions.> Thanks> Alice> > > > ------------ --------- --------- ------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > CHATROOM LINK: http://www.sarcbudd ies.com -- Open all the time.....> > Message Archives:-> http://groups. yahoo.com/ group/Neurosarco idosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups. yahoo.com/ group/Neurosarco idosis/database> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2009 Report Share Posted May 28, 2009 Alice I was diagnosed with NS in march of 2005 with symptoms that I can remember as far back as 2000 which started with slight tremors in my hands I thought it was parkinson's or MS things progressively got worse until finally I was sent to mayo by my neuro and they found sarc in a lung biopsy. It sounds to me like you are having what is called CLONIS this is where you have uncontrollable muscle spasms I take a drug called Primidone 50 mg a day this is a antisiesere drug and makes my clonis less severe hope this helps some Subject: Re: spasmsTo: Neurosarcoidosis Date: Wednesday, May 27, 2009, 12:48 PM Alice,Sorry to hear about your spells. I had the same thing until I dropped from 60mg a day down to 20 mg of Prednisone a day. Right now I am on 20mg of Prednisone and 50mg of Imuran not to mention the others. I think I was having a drug interaction. Heck when I fell I would have situations were I could not move a muscle for 2 to 15 minutes. I would talk to to your Doctors and see if you are having a drug interaction. I have been dx with neuro for 12 months and that includes a 3 month remission. Last 6 months have gotten me to love and hate prednisone. I hope this helps you some. I am sure Tracie and Rose will answer you also soon the have real good and sage advice I would listen them if I was you. Alice may you be blessed with many Pain Free and loving days.Greg aka Krum Dawg>> I have these jerking spells, it effects my whole body, some are worse than others. I was diagnosed with neuro-sarcoma year ago.Of course I have it in my lungs, lymph nodes, bones, and joints. However the jerking spells are getting worse, I'm on 40 mg of prednisone, 20 mg. of methotrexate, and many more meds. My question someone suggested depakote for the jerking spells.Has anyone ever tried this? I walk with a walker and even with that I still fall if the spells are bad.I have them all day long. Open to suggestions.> Thanks> Alice> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2009 Report Share Posted May 28, 2009 Hi Alice. I also have neurosarc and I take Neurontin for the jerking and the feelings of bees stinging me but I have never been given anything else for it. Neurontin works good for me. I hope they can find something that works for you. Subject: spasmsTo: Neurosarcoidosis Date: Wednesday, May 27, 2009, 10:50 AM I have these jerking spells, it ffects my whole body, some are worse than others. I was diagnosed with neuro-sarc a year ago.Of course I hve it in my lungs, lymph nodes, bones, and joints. However the jerking spells are getting worse, I'm on 40 mg of prednisone, 20 mg. of methatrexate, and many more meds. My question someone suggested depacote for the jerking spells.Hs anyone ever tried this? I walk with a walker and even with that I still fall if the spells are bad.I have them all day long. Open to suggestions.ThanksAlice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2009 Report Share Posted May 29, 2009 Back when the systemic symptoms started (2000-2001) I had severe cramping in muscles I didn't know I had--like the outside of my ankle! Just gesturing when I talked, which I do without realizing it, could make my elbow & all the muscles nearby cramp badly. The first thing they tried was Baclofen, which helped a lot, but I had some kind of side effect that I couldn't tolerate--can't remember what it was now. I believe Baclofen is used a lot with MS, even an implanted pump. Anyway, after that is when I started the Quinine, which did wonders for several years, until it was taken off the market. I haven't gotten any relief from Quinine water, so I've just had to put up with the cramps. My hot tub helps some. Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: grannylunatic@...Date: Thu, 28 May 2009 18:32:50 -0700Subject: Re: spasms Hi Alice. I also have neurosarc and I take Neurontin for the jerking and the feelings of bees stinging me but I have never been given anything else for it. Neurontin works good for me. I hope they can find something that works for you. From: aliceminyard <aliceminyard (AT) yahoo (DOT) com>Subject: spasmsTo: Neurosarcoidosis Date: Wednesday, May 27, 2009, 10:50 AM I have these jerking spells, it ffects my whole body, some are worse than others. I was diagnosed with neuro-sarc a year ago.Of course I hve it in my lungs, lymph nodes, bones, and joints. However the jerking spells are getting worse, I'm on 40 mg of prednisone, 20 mg. of methatrexate, and many more meds. My question someone suggested depacote for the jerking spells.Hs anyone ever tried this? I walk with a walker and even with that I still fall if the spells are bad.I have them all day long. Open to suggestions.ThanksAlice Hotmail® goes with you. Get it on your BlackBerry or iPhone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2009 Report Share Posted May 29, 2009 I have had experienced tremors for years. I am also on Primidone for the tremors. Debbie From: gregory krumme <krumdawg (AT) tx (DOT) rr.com>Subject: Re: spasmsTo: Neurosarcoidosis@ yahoogroups. comDate: Wednesday, May 27, 2009, 12:48 PM Alice,Sorry to hear about your spells. I had the same thing until I dropped from 60mg a day down to 20 mg of Prednisone a day. Right now I am on 20mg of Prednisone and 50mg of Imuran not to mention the others. I think I was having a drug interaction. Heck when I fell I would have situations were I could not move a muscle for 2 to 15 minutes. I would talk to to your Doctors and see if you are having a drug interaction. I have been dx with neuro for 12 months and that includes a 3 month remission. Last 6 months have gotten me to love and hate prednisone. I hope this helps you some. I am sure Tracie and Rose will answer you also soon the have real good and sage advice I would listen them if I was you. Alice may you be blessed with many Pain Free and loving days.Greg aka Krum Dawg>> I have these jerking spells, it effects my whole body, some are worse than others. I was diagnosed with neuro-sarcoma year ago.Of course I have it in my lungs, lymph nodes, bones, and joints. However the jerking spells are getting worse, I'm on 40 mg of prednisone, 20 mg. of methotrexate, and many more meds. My question someone suggested depakote for the jerking spells.Has anyone ever tried this? I walk with a walker and even with that I still fall if the spells are bad.I have them all day long. Open to suggestions.> Thanks> Alice> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2009 Report Share Posted May 29, 2009 rose, Get your doc to put you on Hydroxychloroquine. It is Plaquenil's generic. The quine is quinine, but without the blindness that self dosing on quinine would bring on. You do have to get eye exams every six months to make sure your retina's aren't developing plaquenil toxicity-- but that's no biggie. Quinine was used for malaria-- and the muscle spasms that vitamin c defiency brought on. So-- are you getting enough fruit and veges in your diet?? Calcium and magnesium defiency also causes muscle spasms. So-- again, it is coming back to nutrition and vitamin/mineral defiency-- I do believe I see a pattern, now if we can only get our docs to see it! Hugs, Tracie NS Co-owner/moderator Subject: RE: spasmsTo: neurosarcoidosis Date: Friday, May 29, 2009, 2:00 AM Back when the systemic symptoms started (2000-2001) I had severe cramping in muscles I didn't know I had--like the outside of my ankle! Just gesturing when I talked, which I do without realizing it, could make my elbow & all the muscles nearby cramp badly. The first thing they tried was Baclofen, which helped a lot, but I had some kind of side effect that I couldn't tolerate--can' t remember what it was now. I believe Baclofen is used a lot with MS, even an implanted pump. Anyway, after that is when I started the Quinine, which did wonders for several years, until it was taken off the market. I haven't gotten any relief from Quinine water, so I've just had to put up with the cramps. My hot tub helps some. Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis@ yahoogroups. comFrom: grannylunatic@ yahoo.comDate: Thu, 28 May 2009 18:32:50 -0700Subject: Re: spasms Hi Alice. I also have neurosarc and I take Neurontin for the jerking and the feelings of bees stinging me but I have never been given anything else for it. Neurontin works good for me. I hope they can find something that works for you. From: aliceminyard <aliceminyard@ yahoo.com>Subject: spasmsTo: Neurosarcoidosis@ yahoogroups. comDate: Wednesday, May 27, 2009, 10:50 AM I have these jerking spells, it ffects my whole body, some are worse than others. I was diagnosed with neuro-sarc a year ago.Of course I hve it in my lungs, lymph nodes, bones, and joints. However the jerking spells are getting worse, I'm on 40 mg of prednisone, 20 mg. of methatrexate, and many more meds. My question someone suggested depacote for the jerking spells.Hs anyone ever tried this? I walk with a walker and even with that I still fall if the spells are bad.I have them all day long. Open to suggestions.ThanksAlice Hotmail® goes with you. Get it on your BlackBerry or iPhone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2009 Report Share Posted May 29, 2009 I hated when they took my quinine away! It worked so good for me. OF COURSE!Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... Subject: RE: spasmsTo: neurosarcoidosis Date: Friday, May 29, 2009, 5:00 AM Back when the systemic symptoms started (2000-2001) I had severe cramping in muscles I didn't know I had--like the outside of my ankle! Just gesturing when I talked, which I do without realizing it, could make my elbow & all the muscles nearby cramp badly. The first thing they tried was Baclofen, which helped a lot, but I had some kind of side effect that I couldn't tolerate--can' t remember what it was now. I believe Baclofen is used a lot with MS, even an implanted pump. Anyway, after that is when I started the Quinine, which did wonders for several years, until it was taken off the market. I haven't gotten any relief from Quinine water, so I've just had to put up with the cramps. My hot tub helps some. Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis@ yahoogroups. comFrom: grannylunatic@ yahoo.comDate: Thu, 28 May 2009 18:32:50 -0700Subject: Re: spasms Hi Alice. I also have neurosarc and I take Neurontin for the jerking and the feelings of bees stinging me but I have never been given anything else for it. Neurontin works good for me. I hope they can find something that works for you. From: aliceminyard <aliceminyard@ yahoo.com>Subject: spasmsTo: Neurosarcoidosis@ yahoogroups. comDate: Wednesday, May 27, 2009, 10:50 AM I have these jerking spells, it ffects my whole body, some are worse than others. I was diagnosed with neuro-sarc a year ago.Of course I hve it in my lungs, lymph nodes, bones, and joints. However the jerking spells are getting worse, I'm on 40 mg of prednisone, 20 mg. of methatrexate, and many more meds. My question someone suggested depacote for the jerking spells.Hs anyone ever tried this? I walk with a walker and even with that I still fall if the spells are bad.I have them all day long. Open to suggestions.ThanksAlice Hotmail® goes with you. Get it on your BlackBerry or iPhone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2009 Report Share Posted May 29, 2009 You don't have to go with out quinine, as you can buy tonic water and it has quinine in it.... Add a twist of lime and it is very refreshing and will relieve your cramps. Bob CasperHere you go... Canada Dry Tonic Water Serving Size: 8 oz. (240ml) Amount Per Serving Daily Value* Calories 90 Total fat 0 g 0% Sodium 35 mg 1% Total Carb. 24 g 8% Sugars 23 g Protein 0 g Not a significant source of other nutrients. *Percent Daily Values are based on a 2,000 calorie diet. Ingredients: Carbonated Water, High Fructose Corn Syrup and/or Sugar, Citric Acid, Natural Flavors, Sodium Benzoate (preservative), Quinine. Contains Quinine. Go back to previous pageTo: Neurosarcoidosis Sent: Friday, May 29, 2009 11:03:08 AMSubject: RE: spasms I hated when they took my quinine away! It worked so good for me. OF COURSE!Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@ yahoo.com From: Rose <mamadogrose@ hotmail.com>Subject: RE: spasmsTo: neurosarcoidosis@ yahoogroups. comDate: Friday, May 29, 2009, 5:00 AM Back when the systemic symptoms started (2000-2001) I had severe cramping in muscles I didn't know I had--like the outside of my ankle! Just gesturing when I talked, which I do without realizing it, could make my elbow & all the muscles nearby cramp badly. The first thing they tried was Baclofen, which helped a lot, but I had some kind of side effect that I couldn't tolerate--can' t remember what it was now. I believe Baclofen is used a lot with MS, even an implanted pump. Anyway, after that is when I started the Quinine, which did wonders for several years, until it was taken off the market. I haven't gotten any relief from Quinine water, so I've just had to put up with the cramps. My hot tub helps some. Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis@ yahoogroups. comFrom: grannylunatic@ yahoo.comDate: Thu, 28 May 2009 18:32:50 -0700Subject: Re: spasms Hi Alice. I also have neurosarc and I take Neurontin for the jerking and the feelings of bees stinging me but I have never been given anything else for it. Neurontin works good for me. I hope they can find something that works for you. From: aliceminyard <aliceminyard@ yahoo.com>Subject: spasmsTo: Neurosarcoidosis@ yahoogroups. comDate: Wednesday, May 27, 2009, 10:50 AM I have these jerking spells, it ffects my whole body, some are worse than others. I was diagnosed with neuro-sarc a year ago.Of course I hve it in my lungs, lymph nodes, bones, and joints. However the jerking spells are getting worse, I'm on 40 mg of prednisone, 20 mg. of methatrexate, and many more meds. My question someone suggested depacote for the jerking spells.Hs anyone ever tried this? I walk with a walker and even with that I still fall if the spells are bad.I have them all day long. Open to suggestions.ThanksAlice Hotmail® goes with you. Get it on your BlackBerry or iPhone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2009 Report Share Posted May 29, 2009 You know, Tracie, that's a good idea. Wonder why I didn't think of it?!? I guess it's just one of those things that I've resigned myself to. I also wanted to clarify spasms vs. tremors. I've had tremors (still do when I'm extra tired), but they aren't painful. The spasms are Painful, with a capital P. And the treatment might be very different. So be sure to describe to your docs exactly what you are experiencing. IMHO. Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: tiodaat@...Date: Fri, 29 May 2009 09:10:04 -0700Subject: RE: spasms rose, Get your doc to put you on Hydroxychloroquine. It is Plaquenil's generic. The quine is quinine, but without the blindness that self dosing on quinine would bring on. You do have to get eye exams every six months to make sure your retina's aren't developing plaquenil toxicity-- but that's no biggie. Quinine was used for malaria-- and the muscle spasms that vitamin c defiency brought on. So-- are you getting enough fruit and veges in your diet?? Calcium and magnesium defiency also causes muscle spasms. So-- again, it is coming back to nutrition and vitamin/mineral defiency-- I do believe I see a pattern, now if we can only get our docs to see it! Hugs, Tracie NS Co-owner/moderator From: Rose <mamadogrose (AT) hotmail (DOT) com>Subject: RE: spasmsTo: neurosarcoidosis Date: Friday, May 29, 2009, 2:00 AM Back when the systemic symptoms started (2000-2001) I had severe cramping in muscles I didn't know I had--like the outside of my ankle! Just gesturing when I talked, which I do without realizing it, could make my elbow & all the muscles nearby cramp badly. The first thing they tried was Baclofen, which helped a lot, but I had some kind of side effect that I couldn't tolerate--can' t remember what it was now. I believe Baclofen is used a lot with MS, even an implanted pump. Anyway, after that is when I started the Quinine, which did wonders for several years, until it was taken off the market. I haven't gotten any relief from Quinine water, so I've just had to put up with the cramps. My hot tub helps some. Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis@ yahoogroups. comFrom: grannylunatic@ yahoo.comDate: Thu, 28 May 2009 18:32:50 -0700Subject: Re: spasms Hi Alice. I also have neurosarc and I take Neurontin for the jerking and the feelings of bees stinging me but I have never been given anything else for it. Neurontin works good for me. I hope they can find something that works for you. From: aliceminyard <aliceminyard@ yahoo.com>Subject: spasmsTo: Neurosarcoidosis@ yahoogroups. comDate: Wednesday, May 27, 2009, 10:50 AM I have these jerking spells, it ffects my whole body, some are worse than others. I was diagnosed with neuro-sarc a year ago.Of course I hve it in my lungs, lymph nodes, bones, and joints. However the jerking spells are getting worse, I'm on 40 mg of prednisone, 20 mg. of methatrexate, and many more meds. My question someone suggested depacote for the jerking spells.Hs anyone ever tried this? I walk with a walker and even with that I still fall if the spells are bad.I have them all day long. Open to suggestions.ThanksAlice Hotmail® goes with you. Get it on your BlackBerry or iPhone. Hotmail® goes with you. Get it on your BlackBerry or iPhone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2009 Report Share Posted May 30, 2009 Thanks Bob. I didn't know that!Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... From: Rose <mamadogrose@ hotmail.com>Subject: RE: spasmsTo: neurosarcoidosis@ yahoogroups. comDate: Friday, May 29, 2009, 5:00 AM Back when the systemic symptoms started (2000-2001) I had severe cramping in muscles I didn't know I had--like the outside of my ankle! Just gesturing when I talked, which I do without realizing it, could make my elbow & all the muscles nearby cramp badly. The first thing they tried was Baclofen, which helped a lot, but I had some kind of side effect that I couldn't tolerate--can' t remember what it was now. I believe Baclofen is used a lot with MS, even an implanted pump. Anyway, after that is when I started the Quinine, which did wonders for several years, until it was taken off the market. I haven't gotten any relief from Quinine water, so I've just had to put up with the cramps. My hot tub helps some. Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis@ yahoogroups. comFrom: grannylunatic@ yahoo.comDate: Thu, 28 May 2009 18:32:50 -0700Subject: Re: spasms Hi Alice. I also have neurosarc and I take Neurontin for the jerking and the feelings of bees stinging me but I have never been given anything else for it. Neurontin works good for me. I hope they can find something that works for you. From: aliceminyard <aliceminyard@ yahoo.com>Subject: spasmsTo: Neurosarcoidosis@ yahoogroups. comDate: Wednesday, May 27, 2009, 10:50 AM I have these jerking spells, it ffects my whole body, some are worse than others. I was diagnosed with neuro-sarc a year ago.Of course I hve it in my lungs, lymph nodes, bones, and joints. However the jerking spells are getting worse, I'm on 40 mg of prednisone, 20 mg. of methatrexate, and many more meds. My question someone suggested depacote for the jerking spells.Hs anyone ever tried this? I walk with a walker and even with that I still fall if the spells are bad.I have them all day long. Open to suggestions.ThanksAlice Hotmail® goes with you. Get it on your BlackBerry or iPhone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2009 Report Share Posted May 30, 2009 Bob, as I said, I tried the quinine (tonic) water & it wasn't effective for me. From what I've read, it doesn't have a significant amount of quinine. Maybe it did in the past. Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: robertcasper@...Date: Fri, 29 May 2009 11:16:12 -0700Subject: Re: spasms You don't have to go with out quinine, as you can buy tonic water and it has quinine in it.... Add a twist of lime and it is very refreshing and will relieve your cramps. Bob Casper Here you go... Canada Dry Tonic Water Serving Size: 8 oz. (240ml) Amount Per Serving Daily Value* Calories 90 Total fat 0 g 0% Sodium 35 mg 1% Total Carb. 24 g 8% Sugars 23 g Protein 0 g Not a significant source of other nutrients.*Percent Daily Values are based on a 2,000 calorie diet. Ingredients: Carbonated Water, High Fructose Corn Syrup and/or Sugar, Citric Acid, Natural Flavors, Sodium Benzoate (preservative), Quinine. Contains Quinine. Go back to previous page From: <grannylunatic (AT) yahoo (DOT) com>To: Neurosarcoidosis Sent: Friday, May 29, 2009 11:03:08 AMSubject: RE: spasms I hated when they took my quinine away! It worked so good for me. OF COURSE!Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@ yahoo.com From: Rose <mamadogrose@ hotmail.com>Subject: RE: spasmsTo: neurosarcoidosis@ yahoogroups. comDate: Friday, May 29, 2009, 5:00 AM Back when the systemic symptoms started (2000-2001) I had severe cramping in muscles I didn't know I had--like the outside of my ankle! Just gesturing when I talked, which I do without realizing it, could make my elbow & all the muscles nearby cramp badly. The first thing they tried was Baclofen, which helped a lot, but I had some kind of side effect that I couldn't tolerate--can' t remember what it was now. I believe Baclofen is used a lot with MS, even an implanted pump. Anyway, after that is when I started the Quinine, which did wonders for several years, until it was taken off the market. I haven't gotten any relief from Quinine water, so I've just had to put up with the cramps. My hot tub helps some. Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis@ yahoogroups. comFrom: grannylunatic@ yahoo.comDate: Thu, 28 May 2009 18:32:50 -0700Subject: Re: spasms Hi Alice. I also have neurosarc and I take Neurontin for the jerking and the feelings of bees stinging me but I have never been given anything else for it. Neurontin works good for me. I hope they can find something that works for you. From: aliceminyard <aliceminyard@ yahoo.com>Subject: spasmsTo: Neurosarcoidosis@ yahoogroups. comDate: Wednesday, May 27, 2009, 10:50 AM I have these jerking spells, it ffects my whole body, some are worse than others. I was diagnosed with neuro-sarc a year ago.Of course I hve it in my lungs, lymph nodes, bones, and joints. However the jerking spells are getting worse, I'm on 40 mg of prednisone, 20 mg. of methatrexate, and many more meds. My question someone suggested depacote for the jerking spells.Hs anyone ever tried this? I walk with a walker and even with that I still fall if the spells are bad.I have them all day long. Open to suggestions.ThanksAlice Hotmail® goes with you. Get it on your BlackBerry or iPhone. Hotmail® has ever-growing storage! Don’t worry about storage limits. Check it out. Quote Link to comment Share on other sites More sharing options...
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