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
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
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.
[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
Re: [TMIC] osteoporosis
Greetings Linda, I didn't have insurance with Plaza, sorry. I'm sure the other Roger is probably a nice guy, since we Rogers have to stick together. I tried Lamictal for nerve pain, but it didn't seem to help me much, and since it is such a dangerous drug, I went off it. I've also tried Neurontin, Ultram, Zonegran, and Keppra for nerve pain. The Neurontin knocked me out. I was so sleepy that I couldn't function. The others didn't work, or at least not well. I am now trying Lyrica, which seems to be helping. I'll know when I get to full dosage. Fatigue has also been a big factor with me. I was original put on Provigil which helped a lot, but my insurance company wouldn't pay for it (they say it was only indicated for use in Narcolepsy). I am now on Amantadine three times a day, and it helps some. But I got my neurologist to give me sample of Provigil and I use it once a week on Saturdays when I have my busiest day of the week (I volunteer at my church). I looked up Sjogrens Syndrome and noted that symptoms include dry mouth. I have had a problem with dry mouth for a while, but thought it was a side effect of Cymbalta that I was taking prior to starting the Lyrica. (My neuro thought the Lyrica would work better for the nerve pain.) I've been off the Cymbalta for a week or so, and I still have the dry mouth. (?) I'm hoping that it will just go away. When I was having seizures, I would have them sometime a couple of times a day. The drugs helped, but I had trouble getting to therapeutic doses. When the Primidone finally worked I was pretty much seizure free. When I had three seizures on Memorial Day 1994 and couldn't drive home from my parent's house, I became alarmed. I went to the emergency room three times over the next three days and the seizures were stopped each time using valium. My doctor finally agreed to an MRI and that was when the lesion was discovered in my neck at C-2 to C-3. I was put on prendisone and sent home. A few days later, I couldn't get out of bed and my doctor sent me by air ambulance to Harbor View to have the suspected cancer removed. At Harbor View they put me on higher power steroids and argued for three days on whether my lesion was cancer or not. It was then that they decided it was TM and then I was sent home. My left arm was paralysed for a while, but with PT I was able to get most of the use back. Well, I've gassed on for too long. So I'll quit for now. Thanks for writing. Roger in Kennewick, WA - Original Message - From: [EMAIL PROTECTED] To: ROGER C PRATT Cc: TMIC-list@eskimo.com Sent: Tuesday, April 04, 2006 8:43 PM Subject: 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 Sjogrens Syndrome (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
Re: [TMIC] osteoporosis
<> (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 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 Sjogrens Syndrome (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 >
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
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 >
[TMIC] osteoporosis
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 - Michigan
[TMIC] Osteoporosis
As far as I know, there are only two machines capable of giving paraplegics who are in wheelchairs all of the time, weight bearing exercises. One is a tilt table onto which one is strapped and then the table is raised in so many increments at a time until the person is in a standing position or as close as they can get to one. It may take some time, especially if the patient is also dealing with low blood pressure. When I was using one in Ann Arbor, the therapist was taking blood pressure readings at close intervals during the whole process. If I remember correctly, it took me three or four sessions before I was standing fairly upright and I never made it completely. The other machine is one in which you drive your chair in toward the machine then your feet are strapped into boots attached to pedals. Above the apparatus for your feet are two bicycle handles (?), that you use to rotate the foot pedals. The more you use the handle bars, the faster and farther you go on the "bike". Your legs and feet move as fast as your arms can move. It's a great feeling to see your legs moving and I find it uplifting. The only problem is that these machines must be expensive and are not available in most rehab units. I was fortunate to be at U of M in Michigan at the time it was initiating their studies of TM. Now they are still behind Johns Hopkins, but are gaining quickly and will become one of the most preeminate TM hospitals in the country. I hope this helps. Most of you probably don't need to worry. Those of us with brittle bones need to be careful. That's all we can do. Peace, Jude
