Guest guest Posted December 7, 2005 Report Share Posted December 7, 2005 Hi Barbara, Welcome from across the pond. I also have been wondering about fasciculations and twitching. According to the report from Carmel Armon, MD and another report I read, PLSers do not have them.....I do. Have twitching in index finger and fasciculations between finger and thumb. I hae been taking Namenda for laughing and have stopped taking it to see if it is causing it.I know when I was put on Mirapex 5 yrs ago my thumb twitched so much I had to hold it at nite. Quit Mirapex and twitching stopping. I just reread the data on our members and quite a few report having fasciculations. NOW the biggie. Do we not understand what fasciculations or are the drs missing something. I am currently on baclofen and klonopin. Have been for 3 yrs. Use walker and w/c. Speech in bad. Bed is bad......sleep with pillow under calves of legs to keep heels off bed, pillow between knees, pillow under right shoulder because muscle in arm hurts if I don't. Live in Texas and they predict some sleet for today but doubt it. Never happens when they predict it. , you might get it in Dallas! Anyway, ask away and so nice to meet you. Take Care, Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2005 Report Share Posted December 7, 2005 barbara, what is fasciculations? i am not familiar with this term. Iam 49 yrs. old. i live in pennsyvania in the usa. i am also new to this organization. my legs and feet are almost always hurting. usually after about 4 hours or so of being on my feet i begin to get muscle spasms in my legs and feet. i am losing some range of motion in my hips. i am also beginning to have difficulty swallowing. i too have wondered if this the beginning of als. my doctor said i need to get out there and do the things i really want to do,to live my life fully while i can. miki New member! > Hi eveyone - > > Am I going to be the only one from the UK? I am sitting here with > cold feet - agreeing with everyone wholeheartedly who says that the > cold makes the spasticity worse! > > As you appreciate - I'm new here. 56 year old woman - still working, > walking with a crutch (falling over a fair bit). About 3 years since > sympton onset. My consultant neurologist says PLS, but I get > confused by this as I do get some fasciculations in my legs (? - > anybody else get this and wonder if what they've got is just a slow > variant of ALS?). > > I am a cancer research academic, and have read the literature on PLS > and associated diseases fairly extensively. I am interested in what > drugs and " nutriceuticals " other people with PLS are prescribed. I > currently take Riluzole (aka rilutek) and high dose vitamin C and E. > I've recently added in zinc. Do people in the US take riluzole or is > expense/insurance a problem? > > Look forward to getting to know y'aal! > > Barbara > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2005 Report Share Posted December 7, 2005 Hi Barbara, I am the only one from Turkey on this list. Welcome to board. Best wishes Alper barbaradurkacz yazdı: Hi eveyone - Am I going to be the only one from the UK? I am sitting here with cold feet - agreeing with everyone wholeheartedly who says that the cold makes the spasticity worse! As you appreciate - I'm new here. 56 year old woman - still working, walking with a crutch (falling over a fair bit). About 3 years since sympton onset. My consultant neurologist says PLS, but I get confused by this as I do get some fasciculations in my legs (? - anybody else get this and wonder if what they've got is just a slow variant of ALS?). I am a cancer research academic, and have read the literature on PLS and associated diseases fairly extensively. I am interested in what drugs and " nutriceuticals " other people with PLS are prescribed. I currently take Riluzole (aka rilutek) and high dose vitamin C and E. I've recently added in zinc. Do people in the US take riluzole or is expense/insurance a problem? Look forward to getting to know y'aal! Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2005 Report Share Posted December 7, 2005 Hi Barbara! In answer to your question about fasciculations- a number of us have had them (I used to watch mine for entertainment value). My neurologist said in her experience all PLSers eventually develop some lower motor neuron involvement but it remains benign. She pointed out the atrophy below my little finger on my left hand to a neurology resident as an example. As to Rilutek a number of us take it. My doctor advised I take it only if insurance would cover it. She said it would never be tested in PLS because of the small number of patients and because of the difficulty in measuring outcome criteria in a disease with such a variety of ways symptoms progress and rates of progression as well as the length of time PLS affects patients. As to other meds- most of us take the anti spasticity drugs- mine is intrathecal baclofen. When first diagnosed Dr. Stanley Appel in Houston recommended melatonin, beta carotene and creatine in addition to the vitamin C and E. At the recommendation of the local neurologist I've added Coenzyme Q-10. I am experiencing moderately fast progression so don't know if any of the preventative stuff is making one bit of difference. Anyway, welcome to the list! Lavon > My consultant neurologist says PLS, but I get >confused by this as I do get some fasciculations in my legs (? - >anybody else get this and wonder if what they've got is just a slow >variant of ALS?). > >I currently take Riluzole (aka rilutek) and high dose vitamin C and E. >I've recently added in zinc. Do people in the US take riluzole or is >expense/insurance a problem? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2005 Report Share Posted December 7, 2005 Hi Barbara, I replied to you elsewhere, but I spend many years living in the UK. Where are from? I lived in London, Nottingham and Exeter, during mt teen years. Feel free to email me privately if you want to........that goes for any of you. I am not too mobily lately and would love some emails! I have had to retire from my career (at 48) as a Crisis Intervention Counselor/psychologist. It was hard. But I have found myself growing in other ways since then and am writing a book about it. Take good care Barbara. Di....Canada > > Hi eveyone - > > Am I going to be the only one from the UK? I am sitting here with > cold feet - agreeing with everyone wholeheartedly who says that the > cold makes the spasticity worse! > > As you appreciate - I'm new here. 56 year old woman - still working, > walking with a crutch (falling over a fair bit). About 3 years since > sympton onset. My consultant neurologist says PLS, but I get > confused by this as I do get some fasciculations in my legs (? - > anybody else get this and wonder if what they've got is just a slow > variant of ALS?). > > I am a cancer research academic, and have read the literature on PLS > and associated diseases fairly extensively. I am interested in what > drugs and " nutriceuticals " other people with PLS are prescribed. I > currently take Riluzole (aka rilutek) and high dose vitamin C and E. > I've recently added in zinc. Do people in the US take riluzole or is > expense/insurance a problem? > > Look forward to getting to know y'aal! > > Barbara > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2005 Report Share Posted December 7, 2005 ---I don't know where you got the idea that plsers don't have twitches,I had terrible ones before I started on baclofen. I have had pls for 20 yrs.Carolyn In PLS-FRIENDS , riddlea@w... wrote: > > Hi Barbara, > > Welcome from across the pond. > I also have been wondering about fasciculations and twitching. > According to the report from Carmel Armon, MD and another report I read, > PLSers do not have them.....I do. Have twitching in index finger and > fasciculations between finger and thumb. > I hae been taking Namenda for laughing and have stopped taking it to see > if it is causing it.I know when I was put on Mirapex 5 yrs ago my thumb > twitched so much I had to hold it at nite. Quit Mirapex and twitching > stopping. > I just reread the data on our members and quite a few report having > fasciculations. > NOW the biggie. Do we not understand what fasciculations or are the drs > missing something. > I am currently on baclofen and klonopin. Have been for 3 yrs. Use > walker and w/c. Speech in bad. Bed is bad......sleep with pillow under > calves of legs to keep heels off bed, pillow between knees, pillow under > right shoulder because muscle in arm hurts if I don't. > Live in Texas and they predict some sleet for today but doubt it. Never > happens when they predict it. > , you might get it in Dallas! > Anyway, ask away and so nice to meet you. > Take Care, > Arlene > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2005 Report Share Posted December 7, 2005 I read also that PLSers dont have fasciculations and that is the difference between PLS and ALS. I can tell you that it scared me so much that I literally ran crying to my neurologist because I had fasciculations all over. he calmed me down and said it was normal for me to have them and that mine were benign. PHEW!! Maureen in Australia > > > > Hi Barbara, > > > > Welcome from across the pond. > > I also have been wondering about fasciculations and twitching. > > According to the report from Carmel Armon, MD and another report I > read, > > PLSers do not have them.....I do. Have twitching in index > finger and > > fasciculations between finger and thumb. > > I hae been taking Namenda for laughing and have stopped taking it > to see > > if it is causing it.I know when I was put on Mirapex 5 yrs ago my > thumb > > twitched so much I had to hold it at nite. Quit Mirapex and > twitching > > stopping. > > I just reread the data on our members and quite a few report having > > fasciculations. > > NOW the biggie. Do we not understand what fasciculations or are > the drs > > missing something. > > I am currently on baclofen and klonopin. Have been for 3 yrs. Use > > walker and w/c. Speech in bad. Bed is bad......sleep with pillow > under > > calves of legs to keep heels off bed, pillow between knees, pillow > under > > right shoulder because muscle in arm hurts if I don't. > > Live in Texas and they predict some sleet for today but doubt it. > Never > > happens when they predict it. > > , you might get it in Dallas! > > Anyway, ask away and so nice to meet you. > > Take Care, > > Arlene > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2005 Report Share Posted December 7, 2005 Hi Miki and welcome. Fasciculations are muscles that can twitch constantly. For eg. do you ever get the eyelid twitching or finger twitching. These are fasciculations but you can also get them all over your body. I have them mainly in my legs and have been told by my neuro that they are beni > > > barbara, > what is fasciculations? i am not familiar with this term. Iam 49 > yrs. old. i live in pennsyvania in the usa. i am also new to this > organization. my legs and feet are almost always hurting. usually after > about 4 hours or so of being on my feet i begin to get muscle spasms in my > legs and feet. i am losing some range of motion in my hips. i am also > beginning to have difficulty swallowing. i too have wondered if this the > beginning of als. my doctor said i need to get out there and do the things i > really want to do,to live my life fully while i can. > miki > New member! > > > > Hi eveyone - > > > > Am I going to be the only one from the UK? I am sitting here with > > cold feet - agreeing with everyone wholeheartedly who says that the > > cold makes the spasticity worse! > > > > As you appreciate - I'm new here. 56 year old woman - still working, > > walking with a crutch (falling over a fair bit). About 3 years since > > sympton onset. My consultant neurologist says PLS, but I get > > confused by this as I do get some fasciculations in my legs (? - > > anybody else get this and wonder if what they've got is just a slow > > variant of ALS?). > > > > I am a cancer research academic, and have read the literature on PLS > > and associated diseases fairly extensively. I am interested in what > > drugs and " nutriceuticals " other people with PLS are prescribed. I > > currently take Riluzole (aka rilutek) and high dose vitamin C and E. > > I've recently added in zinc. Do people in the US take riluzole or is > > expense/insurance a problem? > > > > Look forward to getting to know y'aal! > > > > Barbara > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2005 Report Share Posted December 7, 2005 The last word in my post should have read BENIGN. In PLS-FRIENDS , " Maureen " <mazzie20022000@y...> wrote: > > Hi Miki and welcome. > > Fasciculations are muscles that can twitch constantly. For eg. do > you ever get the eyelid twitching or finger twitching. These are > fasciculations but you can also get them all over your body. I have > them mainly in my legs and have been told by my neuro that they are > beni > > > > > > > > barbara, > > what is fasciculations? i am not familiar with this term. > Iam 49 > > yrs. old. i live in pennsyvania in the usa. i am also new to this > > organization. my legs and feet are almost always hurting. usually > after > > about 4 hours or so of being on my feet i begin to get muscle > spasms in my > > legs and feet. i am losing some range of motion in my hips. i am > also > > beginning to have difficulty swallowing. i too have wondered if > this the > > beginning of als. my doctor said i need to get out there and do the > things i > > really want to do,to live my life fully while i can. > > miki > > New member! > > > > > > > Hi eveyone - > > > > > > Am I going to be the only one from the UK? I am sitting here > with > > > cold feet - agreeing with everyone wholeheartedly who says that > the > > > cold makes the spasticity worse! > > > > > > As you appreciate - I'm new here. 56 year old woman - still > working, > > > walking with a crutch (falling over a fair bit). About 3 years > since > > > sympton onset. My consultant neurologist says PLS, but I get > > > confused by this as I do get some fasciculations in my legs (? - > > > anybody else get this and wonder if what they've got is just a > slow > > > variant of ALS?). > > > > > > I am a cancer research academic, and have read the literature > on PLS > > > and associated diseases fairly extensively. I am interested in > what > > > drugs and " nutriceuticals " other people with PLS are > prescribed. I > > > currently take Riluzole (aka rilutek) and high dose vitamin C > and E. > > > I've recently added in zinc. Do people in the US take riluzole > or is > > > expense/insurance a problem? > > > > > > Look forward to getting to know y'aal! > > > > > > Barbara > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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