Re: Fw: [TMIC] Spill
Someone sent an article about Lyrica and when it got to side effects.early in list is mentioned diabetis..and since I have steroid induced diabetis, I wouldn't try it... course, I quit all pain meds etc for tm a few years ago and just live with it...the side effects (mostly weight gain!) weren't worth it!! besides, I take enough 'have to have' meds the way it is.blood pressure, diabetis, water retention, etc and then vitamins..I feel like a pharmacy!! or like I should own the pharmacy!! janh Stillwater, OK
Re: [TMIC] BREAKING BONES
Cardio-Vascular surgeon said that it was a blessing that I broke my leg when I fell, or I wouldn't have gone to the doctor/hospital where they discovered the 96% block-age in my left carotid..which had caused me to have a small stroke.which had caused the fall in the first place!! and I take Fosamax.course I've taken pred- nisone since 1984 on and off.before tm struck in '96...and of course off and on since tm came to live with us...which of course is the root of my brittle bones (prednisone not tm). My 2¢ janh Stillwater, OK
RE: Fw: [TMIC] Spill
Hi, Heather. It sounds like you had a pretty good visit too. I am going to ask my new neuro about Lyrica, too. I have recurrent TM and after the 3rd episode I haven't seen much improvement.I do take calcium every day along with a multi-vitamin with minerals. I take my baclofen doses 12-13 hours apart, the dose in the evening is double the a.m. I do not take a midday dose. I wanted to take the baclofen at bedtime, but I forget it too often and then I'm wakeful during the night, having a hard time staying asleep. So I take it a little while after dinner with all my other pills, and try to go to bed about 2 hours after taking it. I can usually get 5 or 6 hrs of sleep that way. Deep sleep is one of the things I miss the most!I would not believe him about the improvement, though. 6 mos to 1 year may be the common, but we are not amoung that group. My dr.s told me that it can happen as far as 5 years out, and as long as you are working your muscles and exercising, you shouldn't give up...and I know you won't! Have a great weekend, DebC in Mi. --- On Fri 11/04, Heather & Pieter < [EMAIL PROTECTED] > wrote:From: Heather & Pieter [mailto: [EMAIL PROTECTED]To: tmic-list@eskimo.comDate: Fri, 04 Nov 2005 15:53:49 -0700Subject: Fw: [TMIC] Spill - Original Message - From: Heather & Pieter To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Friday, November 04, 2005 11:54 AMSubject: Re: [TMIC] SpillHi Deb I was at the physiatrist on Tuesday. I have had TM since Sept 6/03. I am one of the walking wounded. At my visit I asked him a lot of questions. About Lyrica - he said that there are too many side effects and that he would like me to stay with the Gabapentin. He said that Lyrica goes by a different name here in Canada. There is not a generic brand and that it would not be covered by our Medical plan. Unless I had private insurance it is very expensive. About Calcium - I asked if I should still be taking Calcium and the Vitamin D. He said yes, that I should still be on 1,000 mg of Calcium per day and I already knew that the Vitamin D helped with the absorption of the Calcium. He did ask though if I had had a bone density test. I told him never. So he is going to ask that my GP do one of those once a year. Since our bodies lose Calcium and strength very quickly and especially when I was in hospital the 2 months and in recovery mode for much longer it is a good idea to do this. At least that is how I perceived it. I wonder if that is why some break bones so often when having TM. I have not broken any bones bu! t I have fallen several times. I seem to trip over the littlest things or non-things (I wonder who puts those little pieces of fluff in our way on the floor :>) ) I asked about how I would go about cutting back on pain meds if I can tolerate it. I would like to try and limit the fogginess and forgetfulness that seems to be part of the medications. He said that I should try and stretch the time between doses if I find that I can tolerate it rather than cut down on the amount of Gabapentin each time. He said that some of his patients go 4 hours, some 5 hours and some longer. Personally I take 600 mg every 5 hours while I am awake and am trying out taking it 6 hours to start now. As for the Baclofen he told me to cut that back very very slowly. I now take 20 mg every 5 hours as well. Since my spasms are mostly in the morning when I wake and at night when my body is tired after the day he suggested reducing by 10 mg at my mid-day dosage. See how that goes for a while. Should I expect more improvement in my symptoms? He indicated that where I am now at just over the 2 year mark is possibly where I will be from now on. There could be 'some' improvement however the most and fastest improvement is usually shown in the first 6 months to a year. In my case this is what I have already seen. Will I have anymore MRI's? He said no. The scarring is there as shown on the last MRI done in Jan of this year 2005. There had been no change from the previous one to that and there have been no new symptoms. It would not be necessary. Should I be taking Vitamin B12 shots? He looked at my file. He indicated that 'normal' was around 100 (at least that is what I think he said) - that fogginess again. Mine was at 500 so I was well above 'normal' and need not worry about those shots. How often should I be coming back for appointments? Since I am still regulating my medications he would like to see me again in 6 months. I can always call and make an appointment to see him sooner if I have any further questions or concerns. Thought someone out there may be interested in hearing about my visit. Heather in Calgary - Original Message - From: Deb Casey To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Friday, November 04, 2005 9:03 AMSubject: RE: [TMIC] Spill You faired much better than I. In fact I had just got done telling my husband not to worry so much,
RE: [TMIC] BREAKING BONES
maybe not authority, but certainly common sense with knowledge of anatomy.Thank you for that explanation. It makes sense. I agree with the last 2 points :) bones do make an awful sound when they break, and so thankful that I couldn't feel them!--- On Fri 11/04, ROBERT COOK < [EMAIL PROTECTED] > wrote:From: ROBERT COOK [mailto: [EMAIL PROTECTED]To: tmic-list@eskimo.comDate: Fri, 4 Nov 2005 17:10:02 -0600Subject: [TMIC] BREAKING BONES I HAVE NO AUTHORITY FOR THIS ASSUMPTION, BUT IT IS MY THOUGHTS THAT THOSE WITH THE MORE SEVERE AFTER EFFECTS OF TM = MORE PARALYSIS = ARE MORE LIKELY TO BREAK BONES THAT OTHERS OR OTHERWISE 'AB's'. MY REASONING IS THAT THE MUSCLES HELP IN MAINTAINING PHYSICAL POSTURE AND STRUCTURE AND ARE ATTACHED TO THE BONES FOR THE PURPOSE OF MOVEMENT AND AMBULATION. THE MUSCLES HOLD THE BONES IN PLACE AND WRAP AROUND THEM IN A SORT OF PROTECTIVE FASHION OR CUSHION, AND WHEN HIT OR PUT IN A STRAIN, THE BONES ARE PROTECTED BY THE MUSCLES HOLDING THEM IN PLACE AND WRAPPING AROUND THEM AT FULL TENSION AS A PROTECTOR OR SORTS. MY MUSCLES ARE RATHER FLABBY DUE TO THE PARALYSIS AND IF A LEG IS STRUCK OR PUT IN A TENSION STRESS, THE BONE WOULD BE EASIER TO BREAK. JMHO I HAVE BROKEN A MUSCLE DU! E TO A SPASM, ONCE. SURE GLAD I COULDN'T FEEL IT. IT SOUNDED LIKE A SHOT GUN FIRING - BAMM. NO THAT WAS NOT SEASONING, EITHER BOB FROM HOUSTON-SPRING-, TX. No banners. No pop-ups. No kidding.Make My Way your home on the Web - http://www.myway.com
[TMIC] good news? bad news?
Well, it was not a bladder infection or a uti...basically it's just my nerves..in short..the TM. So, they are going to put me in a study, where they cath me on *both ends* and measure etc..then treat it from there. Since I have gone from one end of the spectrum to the next...(not peeing then peeing too much) they will decide how to treat it. But basically I think I have to wait it out, like all he rest of the nerves/sensations there..bottom of the spinal totem pole. yay! I can ease up on cran juice!! Boy was I getting sick of it LOL Krissy
[TMIC] BREAKING BONES
I HAVE NO AUTHORITY FOR THIS ASSUMPTION, BUT IT IS MY THOUGHTS THAT THOSE WITH THE MORE SEVERE AFTER EFFECTS OF TM = MORE PARALYSIS = ARE MORE LIKELY TO BREAK BONES THAT OTHERS OR OTHERWISE 'AB's'. MY REASONING IS THAT THE MUSCLES HELP IN MAINTAINING PHYSICAL POSTURE AND STRUCTURE AND ARE ATTACHED TO THE BONES FOR THE PURPOSE OF MOVEMENT AND AMBULATION. THE MUSCLES HOLD THE BONES IN PLACE AND WRAP AROUND THEM IN A SORT OF PROTECTIVE FASHION OR CUSHION, AND WHEN HIT OR PUT IN A STRAIN, THE BONES ARE PROTECTED BY THE MUSCLES HOLDING THEM IN PLACE AND WRAPPING AROUND THEM AT FULL TENSION AS A PROTECTOR OR SORTS. MY MUSCLES ARE RATHER FLABBY DUE TO THE PARALYSIS AND IF A LEG IS STRUCK OR PUT IN A TENSION STRESS, THE BONE WOULD BE EASIER TO BREAK. JMHO I HAVE BROKEN A MUSCLE DUE TO A SPASM, ONCE. SURE GLAD I COULDN'T FEEL IT. IT SOUNDED LIKE A SHOT GUN FIRING - BAMM. NO THAT WAS NOT SEASONING, EITHER BOB FROM HOUSTON-SPRING-, TX.
Fw: [TMIC] Spill
- Original Message - From: Heather & Pieter To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Friday, November 04, 2005 11:54 AM Subject: Re: [TMIC] Spill Hi Deb I was at the physiatrist on Tuesday. I have had TM since Sept 6/03. I am one of the walking wounded. At my visit I asked him a lot of questions. About Lyrica - he said that there are too many side effects and that he would like me to stay with the Gabapentin. He said that Lyrica goes by a different name here in Canada. There is not a generic brand and that it would not be covered by our Medical plan. Unless I had private insurance it is very expensive. About Calcium - I asked if I should still be taking Calcium and the Vitamin D. He said yes, that I should still be on 1,000 mg of Calcium per day and I already knew that the Vitamin D helped with the absorption of the Calcium. He did ask though if I had had a bone density test. I told him never. So he is going to ask that my GP do one of those once a year. Since our bodies lose Calcium and strength very quickly and especially when I was in hospital the 2 months and in recovery mode for much longer it is a good idea to do this. At least that is how I perceived it. I wonder if that is why some break bones so often when having TM. I have not broken any bones but I have fallen several times. I seem to trip over the littlest things or non-things (I wonder who puts those little pieces of fluff in our way on the floor :>) ) I asked about how I would go about cutting back on pain meds if I can tolerate it. I would like to try and limit the fogginess and forgetfulness that seems to be part of the medications. He said that I should try and stretch the time between doses if I find that I can tolerate it rather than cut down on the amount of Gabapentin each time. He said that some of his patients go 4 hours, some 5 hours and some longer. Personally I take 600 mg every 5 hours while I am awake and am trying out taking it 6 hours to start now. As for the Baclofen he told me to cut that back very very slowly. I now take 20 mg every 5 hours as well. Since my spasms are mostly in the morning when I wake and at night when my body is tired after the day he suggested reducing by 10 mg at my mid-day dosage. See how that goes for a while. Should I expect more improvement in my symptoms? He indicated that where I am now at just over the 2 year mark is possibly where I will be from now on. There could be 'some' improvement however the most and fastest improvement is usually shown in the first 6 months to a year. In my case this is what I have already seen. Will I have anymore MRI's? He said no. The scarring is there as shown on the last MRI done in Jan of this year 2005. There had been no change from the previous one to that and there have been no new symptoms. It would not be necessary. Should I be taking Vitamin B12 shots? He looked at my file. He indicated that 'normal' was around 100 (at least that is what I think he said) - that fogginess again. Mine was at 500 so I was well above 'normal' and need not worry about those shots. How often should I be coming back for appointments? Since I am still regulating my medications he would like to see me again in 6 months. I can always call and make an appointment to see him sooner if I have any further questions or concerns. Thought someone out there may be interested in hearing about my visit. Heather in Calgary - Original Message - From: Deb Casey To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Friday, November 04, 2005 9:03 AM Subject: RE: [TMIC] Spill You faired much better than I. In fact I had just got done telling my husband not to worry so much, that there wasn't even enough room in our bathroom for me to fall, and of course you all know the story, I not only fell, but I fractured my ankle bones, resulting in surgery and plates, screws and pins-since TM I have fractured or broken 6 bones! I am very careful now, and they don't know why my bones are so easily snapped, especially since they say I haven't been on the pred long enough for that to have an effect.Glad you got off with only a bruised ego, but on the flip side you have another humorous TM story to share!Thanks for the grins,DebC in Mi.--- On Thu 11/03, Cody Kidwell < [EMAIL PROTECTED] > wrote: From: Cody Kidwell [mailto: [EMAIL PROTECTED]To: tmic-list@eskimo.comDate: Thu, 3 Nov 2005 21:07:51 -0600Subject: [TMIC] Spill I fell out of the wheel chair again. I am beginning to think I don't belong in one of these things.Ha! Ha! This time I was in the bathroom getting ready to transfer to the sho
Fw: [TMIC] Spill/Diane
Subject: Re: [TMIC] Spill/Diane Hiya, I always keep my walker handy for those bad days. Most days the cane is fine, and some days I can even stagger around without anything, but my trusty walker is a foolproof safety measure. (At least I think so as I haven't managed to fall down with it.yet.) Hugs, Grace...P.SBe careful in those danged parking lots!
[TMIC] OT Question OT
Do any of you folks know Grace's email address? I have been trying to email her the last 3 days and they are bouncing back as undeliverableso I am thinking my email address for her must be wrong. And, have you seen any emails from her lately? Mary Eden
Re: [TMIC] Spill
Cody, so glad you didn't hurt yourself - and so glad your son was home to help you. Darn those spasms. Must be the week for spasm falls. I took a fall in our parking lot on Tuesday. Took 2 people to get me up and into the car. Have put away the cane and gone back to the walker. At least I can sit when the spasms start. Oh wellit could be worse. It could have taken THREE people to get me up. Diane in Canada Cody Kidwell wrote: I fell out of the wheel chair again. I am beginning to think I don't belong in one of these things.Ha! Ha! This time I was in the bathroom getting ready to transfer to the shower chair. I was not transferring. I was just sitting in my chair and had grabbed the remote to turn on the TV to watch while taking a shower. It happened so quit I am not real sure what happened other than I landed in the floor. I think I had a spasm in both legs and maybe my back or abdomen. I think my legs and body just had a spasm and my legs straightened forward causing me to slide forward and the wheelchair to tip forward causing me to slide out and down to the floor. I landed on my bottom with my legs crossed in front of me. No body damage or bruises or anything. Just my pride was hurt. My son came over and scooped me up and on to the bed. We checked the wheelchair and nothing had came loose or anything wrong that we could find. I guess I just need to be more careful...Cody in Austin
RE: [TMIC] Spill
You faired much better than I. In fact I had just got done telling my husband not to worry so much, that there wasn't even enough room in our bathroom for me to fall, and of course you all know the story, I not only fell, but I fractured my ankle bones, resulting in surgery and plates, screws and pins-since TM I have fractured or broken 6 bones! I am very careful now, and they don't know why my bones are so easily snapped, especially since they say I haven't been on the pred long enough for that to have an effect.Glad you got off with only a bruised ego, but on the flip side you have another humorous TM story to share!Thanks for the grins,DebC in Mi.--- On Thu 11/03, Cody Kidwell < [EMAIL PROTECTED] > wrote:From: Cody Kidwell [mailto: [EMAIL PROTECTED]To: tmic-list@eskimo.comDate: Thu, 3 Nov 2005 21:07:51 -0600Subject: [TMIC] Spill I fell out of the wheel chair again. I am beginning to think I don't belong in one of these things.Ha! Ha! This time I was in the bathroom getting ready to transfer to the shower chair. I was not transferring. I was just sitting in my chair and had grabbed the remote to turn on the TV to watch while taking a shower. It happened so quit I am not real sure what happened other than I landed in the floor. I think I had a spasm in both legs and maybe my back or abdomen. I think my legs and body just had a spasm and my legs straightened forward causing me to slide forward and the wheelchair to tip forward causing me to slide out and down to the floor. I landed on my bottom with my legs crossed in front of me. No body damage or bruises or anything. Just my pride was hurt. My son came over and scooped me up and on to the bed. We checked the wheelchair and nothing had came loose or anything wrong that we could find. I guess I just need to be more careful...Cody in AustinNo banners. No pop-ups. No kidding.Make My Way your home on the Web - http://www.myway.com
RE: [TMIC] Update
Wow, sounds like you've found a keeper! I see my new neuro on Monday. My first neuro has gone into neuro-muscular research and he set me up with my new dr. who is specializing in ms. Let us know how the brain mri goes.I've never had my brain done either. I'd be very interested to know what he finds in relation to the congnitive and memory lapses. It's very frustrating and doesn't seem to be improving here! The only side effect I have from Baclofen is sleepiness. Happens about 2 hrs. after taking it. I take 10 mg. in the morning and 20mg at night. It has almost completely stopped my spasms.Take care, DebC in Mi.--- O! n Thu 11/03, Mary W < [EMAIL PROTECTED] > wrote:From: Mary W [mailto: [EMAIL PROTECTED]To: tmic-list@eskimo.comDate: Thu, 3 Nov 2005 13:42:07 -0800Subject: [TMIC] UpdateI saw a different neuro today for the first time, as my other one movedhis practice out of the area. I get a checkup every 6 months.This guy seems pretty good. He has all of my records as the doc I sawpreviously was his associate.He did a very thorough neuro exam and discussed the course of my TMsince onset 12/96.He was quite surprised that I have never had a brain MRI, so I'm goingto finally have one. He mentioned the possibility of MS, so we will see.He seemed somewhat concerned about my cognitive problems, memory etc.Also, he wants me to go to a rehab program to learn about some exercisesthat may help with bowel control.In addition, he wants me to start on 10mg of Baclofen 2 or 3 times aday. I forget which! Guess I'll find out when I pick it up I'venever taken it before. Any side effects I should be aware of?My daughter, who is a nurse, went with me. She was quite impressed withhis thoroughness. My visit with him was a little over 45 minutes.I go back to see him Dec. 21.I feel very comfortable with him.Mary W Grass Valley CaNo banners. No pop-ups. No kidding.Make My Way your home on the Web - http://www.myway.com
RE: [TMIC] Spill
OK, YOU DO KNOW HOW TO PREVENT THAT, DON'T YOU> WEAR YOUR SEAT BELT - BUCKLE-UP FOR SAFETY, AS THEY SAY. I GET SOME OF THE SAME SPASZZES AND WILL HAVE TO BUCKLE-UP MYSELF ONE OF THESE DAYS. IF YOU ARE LIKE ME, YOU REMOVED THE SEAT BUCKLE, FIND IT AND PUT IT BACK ON, YOU NUT. THIS E-MAIL AND ANY ATTACHMENTS MAY CONTAIN LEGALLY PRIVILEGED INFORMATION THAT IS PROTECTED BY LAW. IF YOU RECEIVED IT IN ERROR, PLEASE NOTIFY THE SENDER AND DELETE THE MESSAGE AND ANY ATTACHMENTS. ANY DISTRIBUTION , USE OR COPYING OF THIS MESSAGE OR ATTACHMENTS BY ANYONE OTHER THAN THE INTENDED RECIPIENT IS STRICTLY PROHIBITED. - Original Message - From: Cody Kidwell To: TMIC Sent: 11/3/2005 9:08:36 PM Subject: [TMIC] Spill I fell out of the wheel chair again. I am beginning to think I don't belong in one of these things.Ha! Ha! This time I was in the bathroom getting ready to transfer to the shower chair. I was not transferring. I was just sitting in my chair and had grabbed the remote to turn on the TV to watch while taking a shower. It happened so quit I am not real sure what happened other than I landed in the floor. I think I had a spasm in both legs and maybe my back or abdomen. I think my legs and body just had a spasm and my legs straightened forward causing me to slide forward and the wheelchair to tip forward causing me to slide out and down to the floor. I landed on my bottom with my legs crossed in front of me. No body damage or bruises or anything. Just my pride was hurt. My son came over and scooped me up and on to the bed. We checked the wheelchair and nothing had came loose or anything wrong that we could find. I guess I just need to be more careful.! ..Cody in Austin
Re: [TMIC] Update
In a message dated 11/3/2005 4:43:56 PM Eastern Standard Time, [EMAIL PROTECTED] writes: Also, he wants me to go to a rehab program to learn about some exercisesthat may help with bowel control. Would you mind sharing those when you learn them? :-) You mentioned Baclofen -- I was on that for a while but it didn't seem to do anything for me. But others have benefitted from it. Glad you found a doc. you feel comfortable with!! Barbara H.
Re: Fw: [TMIC] Spill
In a message dated 11/4/2005 5:41:49 AM Eastern Standard Time, [EMAIL PROTECTED] writes: I've taken a few like that and it's convinced me that God gave us our backsides for a very good reason. Just a day or two ago, I lost my footing and slid down the stairs on my rump. Actually, I got downstairs a whole lot quicker than I would have by walking down them. I did that one Christmas night a couple of years ago. Thankfully those stairs were carpeted. I did end up with a bruise on my hip, but no damage otherwise. I go up and down those stairs often -- don't know what caused me to lose my footing then! Glad you're ok, Cody!! Barbara H.
RE: [TMIC] OT- Bras
Frank, You are a wonder! We love history too, and we love you!--- On Mon 10/31, [EMAIL PROTECTED] < [EMAIL PROTECTED] > wrote: From: [EMAIL PROTECTED] [mailto: [EMAIL PROTECTED]To: [EMAIL PROTECTED], TMIC-list@eskimo.comDate: Mon, 31 Oct 2005 09:50:30 -0500Subject: [TMIC] OT- BrasI believe the first bras were a french invention,But the Bra as we know it today was invented by Howard Hughes, of the wooden goose fame and Katherine Hepburn. He was "The Aviator," but he also had a friend (Jane Russell ?) who was too well endowed, so Howard took pencil to paper and designed something that would control those "modified sweat glands."History is so much funFNo banners. No pop-ups. No kidding.Make My Way your home on the Web - http://www.myway.com
RE: [TMIC] I HAVE BEEN AWOL!
Welcome back! The book idea is very cool. Gunny's book was a great read, and I know yours will be too. I've always enjoyed writing, I find it very cathartic - a really cheap therapist :) good luck with itDebC in Mi. --- On Sun 10/30, Michael Carroll < [EMAIL PROTECTED] > wrote:From: Michael Carroll [mailto: [EMAIL PROTECTED]To: tmic-list@eskimo.comDate: Sun, 30 Oct 2005 19:59:28 -0600Subject: [TMIC] I HAVE BEEN AWOL! Hello Everyone, I have been away for the past 18months. Just needed a break and had to do a little restructuring in myfight with TM. I have missed you guys and look forward to meeting thoseof you who have come aboard while I was away. I have just celebrated myninth anniversary with TM. If I can be of help to anyone, please do nothesitate to contact me. I have moved from the mountains of North Carolina back to my birthplace of Montgomery, AL. Roll Tide Roll! I have begun writing a book about theperils, trials, and life of TM. If you have something you would like tosee in print, I am open to new and different ideas. I do not propose tobe a spokesman for us all, I just have a somewhat unusual story that I want toshare with others. Hopefully, I will be able to help someone. MichaelNo banners. No pop-ups. No kidding.Make My Way your home on the Web - http://www.myway.com
Fw: [TMIC] Spill
- Original Message - From: Grace To: Cody Kidwell Cc: TMIC Sent: Friday, November 04, 2005 5:28 AM Subject: Re: [TMIC] Spill Thank heavens that you weren't hurt! If you're going to take a spill, that's the way to go---what I mean is no injuries. I've taken a few like that and it's convinced me that God gave us our backsides for a very good reason. Just a day or two ago, I lost my footing and slid down the stairs on my rump. Actually, I got downstairs a whole lot quicker than I would have by walking down them. Like you, I didn't even get a bruise---just surprised and spooked the kids whenever I made my entry into the living room. Then yesterday, I was walking into the bathroom holding our new puppy (She weighs less than a pound.) and lost my footing, doing a split and landing on one elbowbut I didn't drop the puppy and no one got hurt. My daughter heard the thump and rushed in and picked me up. She was terrified, but I had to laugh---what else can we do? Hugs, Grace
