Re: [TMIC] osteoporosis
Since TM, I've said that walking for me is like a marathon for a normal person. After 50 feet or so, I'm soaked and feeling like I'd done a 5K marathon - or what I would think it would be like. Even doing dishes is a major taks anymore. I know my heart rate increases by walking or doing 15 minutes of work and it takes several minutes for my heart to calm down to a normal pace. I think with TM, it is a resistance type of exercise - it takes so much more for us to move - so much more than before - and everything we do is a challenge and an exercise in determination. That's my 2 cents worth. Prayer and thoughts for each and every one, Candy K. -Original Message- From: [EMAIL PROTECTED] Sent: Jul 18, 2007 8:12 PM To: tmic-list-at-eskimo.com tmic-list@eskimo.com Subject: [TMIC] osteoporosis Rosalie, After 18 mos with TM, my PCP sent me to an Endocrinologist for a thorough osteo blood work- up to go along with my bone density test. I told him of my concern that I wasn't getting any weight bearing exercise and he said that standing 45 minutes a day was sufficient. I was confident that my time in the kitchen each day met that requirement. I can walk, but walking 45 minutes at a time would be impossible. Isn't it nice to know that the whole day of walking and standing counts for something? Patti - Michigan Candy K.
Re: [TMIC] osteoporosis
Yes, I was once told to stand at least an hour a day. Dr. said when I watch tv to try to stand up during the commercials and it would probably add up to an hour by the end of the day.Rosalie ** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour
Re: [TMIC] osteoporosis
BALANCE - at least I can still spell it. Sometimes I find myself going back 2 or 3 steps before I can go forward 1 step. I don't use a cane in the house unless its a REALLY bad day. But, THANK GOD for walls and furniture - I usually have a bruise on my shoulders from careening off the walls. I moved here in September and I'm sure some of my neighbors thought I was the biggest drunk they ever saw and a VERY SLOW drunk at that! I maybe slow, and I may stumble, stagger, and bounce off walls, but I evntually get to where I'm going. I'm having my carpeting removed because I keep spilling things and I can't keep the carpet clean because vacunming is just too much for me let alone a carpet cleaner! I sure can't afford a carpet cleaner to come in every week or two. The balance thing is an issue with me because I use to do ballroom dancing. I still turl but not intentionally. (My PT said that the dancing that I use to do may be why my balance is better than she expected). One day instead of just being able to spin on my toes as I use to do to change direction, I had my bad leg planted and used my good leg to do a circle with very small steps! I just had to laugh at myself - it was as if my bad leg was glued to the floor! I've found that I have to concentrate and focus on where I'm going - it seems to help my balance! But, if I let just one more thought into my head, I start staggering, stumbling and careening off the walls. I sure can't multi-task anymore especially when I'm walking! Well, I've bent your ear enough. Prayers and thoughts, Candy K. -Original Message- From: Regina Rummel [EMAIL PROTECTED] Sent: Jul 18, 2007 8:54 PM To: cakalley [EMAIL PROTECTED] Subject: Re: [TMIC] osteoporosis Candy, Rosalie, All. You describe exactly how I feel... Going for a walk, a cane on my right hand, and holding on to my daughter's arm on the left is the only way I can walk the two long blocks down the street and back, collapse on the chair, gasping, and feeling as if I had climbed Mount Everest... At physical therapy, they push me really hard, as my doctor prescribed, and I am having the worst time with these balance exercises. I don't understand how balance can improve when our feet are numb and throbbing, etc. and as in my case, feeling a combination of a little dizziness and vertigo. What do you do about balance? Monday's physical therapy really done me in. As far as the osteoporosis, I don't even want to get the density test because I know I'm in bad shape, I don't want to hear it. All I have to do is look at my shrinking wrists. Yikes!!! It's 5:46PM and I haven't done my exercises today. Bad girl am I. All right, I'll do them now. Or maybe not. Yes, I will! Thank you for lending my babbling your ear, and please tell me what you do to work on your balance. R cakalley [EMAIL PROTECTED] wrote: Since TM, I've said that walking for me is like a marathon for a normal person. After 50 feet or so, I'm soaked and feeling like I'd done a 5K marathon - or what I would think it would be like. Even doing dishes is a major taks anymore. I know my heart rate increases by walking or doing 15 minutes of work and it takes several minutes for my heart to calm down to a normal pace. I think with TM, it is a resistance type of exercise - it takes so much more for us to move - so much more than before - and everything we do is a challenge and an exercise in determination. That's my 2 cents worth. Prayer and thoughts for each and every one, Candy K. -Original Message- From: [EMAIL PROTECTED] Sent: Jul 18, 2007 8:12 PM To: tmic-list-at-eskimo.com Subject: [TMIC] osteoporosis Rosalie, After 18 mos with TM, my PCP sent me to an Endocrinologist for a thorough osteo blood work- up to go along with my bone density test. I told him of my concern that I wasn't getting any weight bearing exercise and he said that standing 45 minutes a day was sufficient. I was confident that my time in the kitchen each day met that requirement. I can walk, but walking 45 minutes at a time would be impossible. Isn't it nice to know that the whole day of walking and standing counts for something? Patti - Michigan Candy K. Candy K.
Re: [TMIC] osteoporosis
What can the endocrinologist help with (besides telling me to stop caffeine)? (FINGERS IN EARS) I can't HEAR you!Sharon. who is a confirmed coffee addict TM 1997 to MS 1998 [EMAIL PROTECTED] wrote: I had a bone density test two weeks ago and now have an appointment with an endocrinologist because of additional bone loss. I've done some research and read on WebMD of the possibility that osteo can be caused by anti seizure meds. I haven't found any info on Neurontin/gabapenten regarding osteo. I have been taking osteo meds since age 48 when a bone density test came back abnormal. A tests at 50 showed no additional loss and at 52 I had improvement. TM and menopause happened simultaneously at age 53, my density test at 54 showed no change. Now, at age 56 the numbers are dropping.I know menopause can be the culprit, but do any of you know anything about anti seizure meds and bone loss? What can the endocrinologist help with (besides telling me to stop caffeine)? Patti - MichiganSharon TMer to MSer Arizona desert for a year--then back to Alaska__Do You Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com
Re: [TMIC] osteoporosis
Hi Linda, I don't post often, but read all the posts everyday. I don't know how osteoporosis is for men, but I do know about seizures. I had seizures for two years before my TM diagnosis (none since). I was put on a number of medications (Febatol, Tegretol, Dilantin, Depakote) which I had allergic reactions to(rashes) when I tried to get to therapeutic dosages. I was finally put on primidone, and that was discontinued when I was diagnosed with TM. I have often wondered if the seizures were early signs of TM since I only passed out on my first seizure and only had jerking seizures from then on. Once I got steroids by IV for 3 days, the seizures stopped. I've had muscle spasms off and on, but no seizures. My doctors don't know (at least can't explain) what the relationship was between the seizures and TM. Interesting question. Do your doctors have any explanations. All my best, Roger - Kennewick, WA - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Cc: TMIC-list@eskimo.com Sent: Monday, April 03, 2006 9:29 PM Subject: Re: [TMIC] osteoporosis Well Patti, your post certainly made me think twice. I don't have an answer to your question, but I do know research has come a long way in treating osteoporosis. Do you know our ages, when TM came to live with us and menopause are the same? I have not had a bone density test and I was having seizures for 2 years prior to being put on seizure medicine (Lamictal) and had no idea that osteo could be caused by anti seizure meds. I have to say now I am a little concerned. I have 2 doctor appts coming up - I will have to ask, I guess to relieve my mind - or give me something else to worry about : - ) Please let us know what the doctor says. Linda - Bothell, WA -- Original message -- From: [EMAIL PROTECTED] I had a bone density test two weeks ago and now have an appointment with an endocrinologist because of additional bone loss. I've done some research and read on WebMD of the possibility that osteo can be caused by anti seizure meds. I haven't found any info on Neurontin/gabapenten regarding osteo. I have been taking osteo meds since age 48 when a bone density test came back abnormal. A tests at 50 showed no additional loss and at 52 I had improvement. TM and menopause happened simultaneously at age 53, my density test at 54 showed no change. Now, at age 56 the numbers are dropping. I know menopause can be the culprit, but do any of you know anything about anti seizure meds and bone loss? What can the endocrinol! ogist help with (besides telling me to stop caffeine)? Patti - Michigan
Re: [TMIC] osteoporosis
Hi Roger, Good to hear from you. First of all I notice you are from Kennewick WA. I live in Bothell and worked at Plaza Ins for 31 years. Did you have your insurance with Plaza and do you know Tom Allen?? Small world if you do. I actually had seizures prior to TM. I also have SjogrensSyndrome (an autoimmune disease I have been treated for since 1988) The seizures continued 3 years into TM. The doctors always related the seizures to the autoimmune disease. I finally had the ambulatory 24-hour test (fun) and it showed that I had a lot of seizure activity during the 24 hours. Therefore I was put on Lamictal, which can be a very dangerous drug, but I was put on it very slowly. I have tolerated it well. And have not had any more seizures since the beginning of the med. Thank goodness. The doctors really don't know for sure - but I had never had a seizure until I had the first autoimmune disease (Sjorgrens). No answers, really. I have learned, unfortunately, that if you have more than 2 seizures you are labled as having epilepsy. Epilepsy only means several seizures during a short period of time. Not one or two over a period of years. My doctors don't know any more than! yours! Nice huh. Please write back - I'd like to know if you are the same person we had insured all those years at Plaza Ins. The best to you with your health Linda (Cherpeski) Bothell, WA P.S. How long have you had TM and where are your lesions? -- Original message -- From: "ROGER C PRATT" [EMAIL PROTECTED] Hi Linda, I don't post often, but read all the posts everyday. I don't know how osteoporosis is for men, but I do know about seizures. I had seizures for two years before my TM diagnosis (none since). I was put on a number of medications (Febatol, Tegretol, Dilantin, Depakote) which I had allergic reactions to(rashes) when I tried to get to therapeutic dosages. I was finally put on primidone, and that was discontinued when I was diagnosed with TM. I have often wondered if the seizures were early signs of TM since I only passed out on my first seizure and only had jerking seizures from then on. Once I got steroids by IV for 3 days, the seizures stopped. I've had muscle spasms off and on, but no seizures. My doctors don't know (at least can't explain) what the relationship was between the seizures and TM. Interesting question. Do your doctors have any explanations. All my best, Roger - Kennewick, WA - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Cc: TMIC-list@eskimo.com Sent: Monday, April 03, 2006 9:29 PM Subject: Re: [TMIC] osteoporosis Well Patti, your post certainly made me think twice. I don't have an answer to your question, but I do know research has come a long way in treating osteoporosis. Do you know our ages, when TM came to live with us and menopause are the same? I have not had a bone density test and I was having seizures for 2 years prior to being put on seizure medicine (Lamictal) and had no idea that osteo could be caused by anti seizure meds. I have to say now I am a little concerned. I have 2 doctor appts coming up - I will have to ask, I guess to relieve my mind - or give me something else to worry about : - ) Please let us know what the doctor says. Linda - Bothell, WA -- Original message -- From: [EMAIL PROTECTED] I had a bone density test two weeks ago and now have an appointment with an endocrinologist because of additional bone loss. I've done some research and read on WebMD of the possibility that osteo can be caused by anti seizure meds. I haven't found any info on Neurontin/gabapenten regarding osteo. I have been taking osteo meds since age 48 when a bone density test came back abnormal. A tests at 50 showed no additional loss and at 52 I had improvement. TM and menopause happened simultaneously at age 53, my density test at 54 showed no change. Now, at age 56 the numbers are dropping. I know menopause can be the culprit, but do any of you know anything about anti seizure meds and bone loss? What can the endocrinol! ! ogist help with (besides telling me to stop caffeine)? Patti - Michigan
