Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 Yes Kara I think this is a symptom of CMT. I feel asleep on the sofa and my youngest son watched me for about 45 minutes. When I woke up he commented that he knew why I was always so tired - I never stopped moving whilst I slept. Robin is 10 and thank God shows no signs of CMT. Love Sue The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller ----- Original Message ----- From: Kara Brisendine Sent: Wednesday, January 23, 2002 9:43 PM Subject: [] Muscle Spasms My 3 year old when sleeping, I have noticed that her spasms are getting much worse. Legs, feet and arms. Do you think that this is because of the CMT? Does anyone else experience this as well? I welcome any feed back on this. LOL, KaraGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 I read this and called my younger son, who does not show signs of CMT to take my grand daughter to the Dr. ASAP. She has been having cramps in her legs for the past 2 years maybe longer, she is now 7. God I hope it is just growing pains! But 10-1 it is not! Drat the luck, poor baby. Kara, I am so sorry the little one is having such troubles. I went through this with my oldest son and know how bad it can get, for child and Mother. Jimmy was grown before a Dr. saw him and knew what he had as soon as he walked into his office. --- Kara Brisendine <karabrisendine@...> wrote: > My 3 year old when sleeping, I have noticed that her > spasms are getting much worse. Legs, feet and arms. > Do you think that this is because of the CMT? Does > anyone else experience this as well? > > I welcome any feed back on this. > > LOL, > > KaraGet more from the Web. FREE MSN Explorer > download : http://explorer.msn.com > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 On a more positive note, we had one of my children blood tested for CMT because of having a lot of leg cramps. The blood test came back negative for CMT. Leg cramps are often part of growing for children. My husband remembers having them, too and he does not have CMT. Good luck. I read this and called my younger son, who does not show signs of CMT to take my grand daughter to the Dr. ASAP. She has been having cramps in her legs for the past 2 years maybe longer, she is now 7. God I hope it is just growing pains! But 10-1 it is not! Drat the luck, poor baby. Kara, I am so sorry the little one is having such troubles. I went through this with my oldest son and know how bad it can get, for child and Mother. Jimmy was grown before a Dr. saw him and knew what he had as soon as he walked into his office. --- Kara Brisendine <karabrisendine@...> wrote: > My 3 year old when sleeping, I have noticed that her > spasms are getting much worse. Legs, feet and arms. > Do you think that this is because of the CMT? Does > anyone else experience this as well? > > I welcome any feed back on this. > > LOL, > > KaraGet more from the Web. FREE MSN Explorer > download : http://explorer.msn.com > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 Hy hubby was the one who spotted my leg movements when he complained one morning that my legs hit me all night long! Now I have the quinine and melatonin and it seems to have solved that probelm! I also noticed something last week when we were out for our walk. I don't walk in a straight line and it is VERY diffiuclt for me to do so. I weave back and forth in order to go forward, I take two or three steps to the side. No wonder it takes so much more energy to walk! Martha Sue Horder-Mason <sue@...> wrote: Yes Kara I think this is a symptom of CMT. I feel asleep on the sofa and my youngest son watched me for about 45 minutes. When I woke up he commented that he knew why I was always so tired - I never stopped moving whilst I slept. Robin is 10 and thank God shows no signs of CMT. Love Sue The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller ----- Original Message ----- From: Kara Brisendine Sent: Wednesday, January 23, 2002 9:43 PM Subject: [] Muscle Spasms My 3 year old when sleeping, I have noticed that her spasms are getting much worse. Legs, feet and arms. Do you think that this is because of the CMT? Does anyone else experience this as well? I welcome any feed back on this. LOL, KaraGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 According to the AMA almost 35% of all adults suffer from some type of sleep disorder whether it be too much stress, sleep apnea, restless leg syndrome and many others. Just my personal observation here but it seems like CMT patients seem to run higher than 35%. Sleep depravation is misdiagnosed a lot, so is CMT. Gretchen, a suggestion for an upcoming poll, How many of us have had sleep studies done? What were the results? Regards, BC ----- Original Message ----- From: Martha Emery <scenemb@...> < > Sent: Thursday, January 24, 2002 5:56 AM Subject: Re: [] Muscle Spasms > > Hy hubby was the one who spotted my leg movements when he complained one morning that my legs hit me all night long! Now I have the quinine and melatonin and it seems to have solved that probelm! I also noticed something last week when we were out for our walk. I don't walk in a straight line and it is VERY diffiuclt for me to do so. I weave back and forth in order to go forward, I take two or three steps to the side. No wonder it takes so much more energy to walk! > Martha > Sue Horder-Mason <sue@...> wrote: Yes Kara I think this is a symptom of CMT. I feel asleep on the sofa and my youngest son watched me for about 45 minutes. When I woke up he commented that he knew why I was always so tired - I never stopped moving whilst I slept. > Robin is 10 and thank God shows no signs of CMT. > Love > Sue > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > > " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller > > ----- Original Message ----- > From: Kara Brisendine > > Sent: Wednesday, January 23, 2002 9:43 PM > Subject: [] Muscle Spasms > > > My 3 year old when sleeping, I have noticed that her spasms are getting much worse. Legs, feet and arms. Do you think that this is because of the CMT? Does anyone else experience this as well? > > I welcome any feed back on this. > > LOL, > > KaraGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2002 Report Share Posted January 25, 2002 I thought I was the only one who walked like a " drunk " . I also notice it when using my walker, I told me friend that the silly thing had been drinking again. No seriously, I don't think I have the leg movements at night, although when sitting for a time, like here on the pc they jerk and act like they need to move or stretch or something other than what I am doing. It gets very tiresome and that's a fact. i get get up and go to the kitchen or bathroom, just to give them something else to do. If I thought I was sitting too much I wouldn't be concerned, but I am up and down a lot and still work so it can' be that they are just needing exercise. Susie --- Martha Emery <scenemb@...> wrote: > > Hy hubby was the one who spotted my leg movements > when he complained one morning that my legs hit me > all night long! Now I have the quinine and > melatonin and it seems to have solved that probelm! > I also noticed something last week when we were out > for our walk. I don't walk in a straight line and > it is VERY diffiuclt for me to do so. I weave back > and forth in order to go forward, I take two or > three steps to the side. No wonder it takes so much > more energy to walk! > Martha > Sue Horder-Mason > <sue@...> wrote: Yes Kara I > think this is a symptom of CMT. I feel asleep on the > sofa and my youngest son watched me for about 45 > minutes. When I woke up he commented that he knew > why I was always so tired - I never stopped moving > whilst I slept. > Robin is 10 and thank God shows no signs of CMT. > Love > Sue > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > > " I Thank God for my handicaps, for through them, I > have found myself, my work, and my God. " - Helen > Keller > > ----- Original Message ----- > From: Kara Brisendine > > Sent: Wednesday, January 23, 2002 9:43 PM > Subject: [] Muscle Spasms > > > My 3 year old when sleeping, I have noticed that > her spasms are getting much worse. Legs, feet and > arms. Do you think that this is because of the CMT? > Does anyone else experience this as well? > > I welcome any feed back on this. > > LOL, > > KaraGet more from the Web. FREE MSN Explorer > download : http://explorer.msn.com > > > [Non-text portions of this message have been > removed] > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2002 Report Share Posted January 27, 2002 Thanks for the feed back. I was actually hoping that that was it and not something else wrong with her. I know that this is not good to be having but at least now I know that others are doing this as well. LOL, Kara ----- Original Message ----- From: Sue Horder-Mason Sent: Friday, January 25, 2002 4:38 PM Subject: Re: [] Muscle Spasms Yes Kara I think this is a symptom of CMT. I feel asleep on the sofa and my youngest son watched me for about 45 minutes. When I woke up he commented that he knew why I was always so tired - I never stopped moving whilst I slept. Robin is 10 and thank God shows no signs of CMT. Love Sue The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller ----- Original Message ----- From: Kara Brisendine Sent: Wednesday, January 23, 2002 9:43 PM Subject: [] Muscle Spasms My 3 year old when sleeping, I have noticed that her spasms are getting much worse. Legs, feet and arms. Do you think that this is because of the CMT? Does anyone else experience this as well? I welcome any feed back on this. LOL, KaraGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2004 Report Share Posted October 26, 2004 I am using Mag Citrate J And sorry for the confusion, have been using turmeric as well. I use both with so had these on hand. Went to the HFS this morning and have Deep Tissue Repair Oil and lobelia. The lobelia says ’10 -30’ drops 2 -5 times a day. What dose of this would you all recommend ? I should took 25 drops for starters. Also I have taking 2 valerian twice a day, is that OK to continue with that dose? Or should I stop the valerian now that I have the lobelia? It’s a 200 mg dose. ( Could that stuff smell ANY worse???? LOL) I can’t thank you guys enough. So far the Valerian is working just as well as the meds with less brain fog as well. Only side effect is loose stools, which is lots easier to deal with than the brain fog. J I bought some a pack of the ThermaCare self activated heating pads. I should have put some lavender EO on it before applying it, next time. It delivers a nice heat to the sore spot, but wonder if the ings are OK? Activated charcoal, iron powder, sodium chloride, sodium thiosulfate and water. Only one I don’t recognize there is the thiosulfate. Any comments on this? Don’t want to do more damage, but I have to admit it sure FEELS great. Carol in IL Mom to seven kid, twin grandson's and , 4 DS " Unless the Lord builds the house, they labor in vain. " Psalm 127 My problem is not how I look, it's how you see me · Groups is subject to the Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2004 Report Share Posted October 26, 2004 Carol, I've not used lobelia for muscle spasms, other things but not that... the deep tissue oil should help you though... On the lobelia... try 20 drops = see how it goes.. you can increase or decrease depending - start now at lunch time.. say about 3 pm or so... take some more if you need to.. I like tumeric for muscle pains...how much do you take of tumeric? Suzidoihavtasay <doihavtasay@...> wrote: I am using Mag Citrate J And sorry for the confusion, have been using turmeric as well. I use both with so had these on hand. Went to the HFS this morning and have Deep Tissue Repair Oil and lobelia. The lobelia says ’10 -30’ drops 2 -5 times a day. What dose of this would you all recommend ? I should took 25 drops for starters. Also I have taking 2 valerian twice a day, is that OK to continue with that dose? Or should I stop the valerian now that I have the lobelia? It’s a 200 mg dose. ( Could that stuff smell ANY worse???? LOL) I can’t thank you guys enough. So far the Valerian is working just as well as the meds with less brain fog as well. Only side effect is loose stools, which is lots easier to deal with than the brain fog. J I bought some a pack of the ThermaCare self activated heating pads. I should have put some lavender EO on it before applying it, next time. It delivers a nice heat to the sore spot, but wonder if the ings are OK? Activated charcoal, iron powder, sodium chloride, sodium thiosulfate and water. Only one I don’t recognize there is the thiosulfate. Any comments on this? Don’t want to do more damage, but I have to admit it sure FEELS great. Carol in IL Mom to seven kid, twin grandson's and , 4 DS "Unless the Lord builds the house, they labor in vain." Psalm 127 My problem is not how I look, it's how you see me · Groups is subject to the Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2004 Report Share Posted October 26, 2004 doihavtasay wrote: > I am using Mag Citrate J > > And sorry for the confusion, have been using turmeric as well. I use > both with so had these on hand. > > Went to the HFS this morning and have Deep Tissue Repair Oil and lobelia. > > The lobelia says ’10 -30’ drops 2 -5 times a day. > > What dose of this would you all recommend ? I should took 25 drops for > starters. > > Also I have taking 2 valerian twice a day, is that OK to continue with > that dose? Or should I stop the valerian now that I have the lobelia? > It’s a 200 mg dose. ( Could that stuff smell ANY worse???? LOL) > > I can’t thank you guys enough. So far the Valerian is working just as > well as the meds with less brain fog as well. Only side effect is > loose stools, which is lots easier to deal with than the brain fog. J > > I bought some a pack of the ThermaCare self activated heating pads. I > should have put some lavender EO on it before applying it, next time. > It delivers a nice heat to the sore spot, but wonder if the ings are > OK? Activated charcoal, iron powder, sodium chloride, sodium > thiosulfate and water. Only one I don’t recognize there is the > thiosulfate. > > Any comments on this? Don’t want to do more damage, but I have to > admit it sure FEELS great. > > //Carol in IL// > ======================== Hi Carol, If you are going to do the Lobelia then you should probably lay off the valerian at first. You may add it back in after you see how you react with Lobelia. You may find you don't need it though. I can't imagine valerian giving anyone loose stools but then everyone is different. I am glad to hear that you are beginning to feel better though. :-) You might wish to start with 20 drops first and see how it affects you. You can always up the dosage and add your valerian back in. -- Peace, love and light, Don Quai " Spirit sleeps in the mineral, breathes in the vegetable, dreams in the animal and wakes in man. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2006 Report Share Posted December 23, 2006 Hi Margaret, Yes, my husband experienced some wicked muscle spasms as well - goes in the legs and weirdly enough in his jaw and arm..but mostly it has turned into just the typical gleevec bone pain. He took nothing but did stay very physically active during the day so as the muscles would be used for the day. He did take calcium but mostly we have tried to eat the amount of calcium, potassium and iron he needs in a day (really getting tired of pills!) It's fantastic you are taking what your taking (calcium, potassium) but I would suggest eating and extra banana and extra milk a day (or what you like for calcium) Your body may absorb a bit better and its easier on the stomach. Oh as well - tea, coffee (any caffeine) can leach the bones of calcium...so ?? For pain he is taking 292's but really refrains unless massive bone bone (like today)Were you diagnosed Oct or March? (month day year or ??) Will pray for no spasms tonight Margaret! Shalyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2006 Report Share Posted December 23, 2006 My mother was having the same effects from Gleevec (400) and all they did for her was lower her to 100 mg and they are trying to build her back up to 400....let's hope it works. Good luck to you Margaret Peake <mpraymond@...> wrote: Seems like I'm on #49 of hopefully no more than 50 side effects of gleevec. I'm on 400mg, taking in the evenings (diagnosed 10-3-06). I've been having severe muscle cramps especially in my feet and legs. I'm taking potassium, calcium and magnesium. The onc dr prescribed 20 mg of quinnine before bedtime. Anyone else used quinine for muscle spasms? Or anything else that effective? I'd appreciate your comments. Margaret Margaret , mpraymond@... margaret-raymond@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2006 Report Share Posted December 23, 2006 Hi Margaret, It sounds like you're already doing everything they suggest to ward off the muscle cramps. The only other things you might try that have helped some is drinking lots and lots and lots of water. Some people have said that was the only thing that helped their cramps. And the other thing is trying a bar of soap under your mattress. I know that sounds ridiculous but some have said that has helped with night time cramps. Good luck, Tracey --- In , Margaret Peake <mpraymond@...> wrote: > > Seems like I'm on #49 of hopefully no more than 50 side effects of gleevec. I'm on 400mg, taking in the evenings (diagnosed 10-3-06). I've been having severe muscle cramps especially in my feet and legs. I'm taking potassium, calcium and magnesium. The onc dr prescribed 20 mg of quinnine before bedtime. Anyone else used quinine for muscle spasms? Or anything else that effective? > > I'd appreciate your comments. > > Margaret > > > > > Margaret , > mpraymond@... > margaret-raymond@... > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2006 Report Share Posted December 27, 2006 Yes. I was diagnosed in Feb. 03 and my ONC recommended quinnine for my cramps. However, I was drinking quinnine products instead of pills. I had a problem drinking enough water to flush my system so he had me on anything liquid. I now attempt to drink a minimum of 32 oz. of water a day in addition all of my regular fluid intake. This seems to help. I also always have a high calcium antibotic on hand to chew when the cramps start as this helps to eliviate them. This one I got from a friend's grandmother, gently rub the cramp with a cloth soaked with vinegar and it will ease the cramped muscle until the calcium can work. Cramps are not as bad now but still happen on occasion and this is still working. H. dxd 2/03 400mg Gleevec 3/03 PCRU 6/03 Q-PCR 11-04 .00014 BMB- Negative 12/06 --- In , Margaret Peake <mpraymond@...> wrote: > > Seems like I'm on #49 of hopefully no more than 50 side effects of gleevec. I'm on 400mg, taking in the evenings (diagnosed 10-3-06). I've been having severe muscle cramps especially in my feet and legs. I'm taking potassium, calcium and magnesium. The onc dr prescribed 20 mg of quinnine before bedtime. Anyone else used quinine for muscle spasms? Or anything else that effective? > > I'd appreciate your comments. > > Margaret > > > > > Margaret , > mpraymond@... > margaret-raymond@... > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 Hi Margaret. I am new to CML and gleevec. I was dx'd December 13th 2006 and started Gleevec December 21st 2006. When I saw that muscle spasms were one of the side-effects I groaned as I am well familiarized with spasms in my thighs, calves and feet due to a lower back problem. I have been on quinine for several months and it has helped me tremendously. For the times when the spasm comes through at night in spite of the quinine I find it very helpful to make sure that my feet are almost pushed up against the foot-board of the bed. Doing so stops the cramp from taking hold. This occured to me because my cramps are generally alleviated when I stand up. Good luck with the cramps, I know how annoying and frustrating they can be, especially when they are interfering with sleep. Quote Link to comment Share on other sites More sharing options...
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