[TMIC] please remove me from the list
[TMIC]
[TMIC] re pins and needles
my feet became unanalyzed recently I now experience pins and needles under my feet. is there anything that can be done to neutralize it?
[TMIC] RE: tmic-digest Digest V2011 #378
re baclofen pump; i too inquired about the pump . my neuro recommended not to have it for two reasons 1) very susceptible to infection and 2) can damage the liver. instead am taking 30 mg in pill form Date: Tue, 15 Nov 2011 08:24:12 -0800 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2011 #378 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest Digest Volume 2011 : Issue 378 Today's Topics: [TMIC] Baclofen Question [ Emily em...@telephonelady.com ] Re: [TMIC] Baclofen Question [ Janice Nichols jannic@centurytel ] Re: [TMIC] Baclofen Question [ Susan Kleinz skle...@cox.net ] Re: [TMIC] Baclofen Question [ Janice Nichols jannic@centurytel ] OT - Re: [TMIC] re marieke dufresne [ Bernie bpe...@austin.rr.com ] Re: OT - Re: [TMIC] re marieke dufre [ Barbara H. barbara...@gmail.com ] Re: [TMIC] Baclofen Question [ a-ry...@comcast.net ] --Forwarded Message Attachment-- Date: Sat, 12 Nov 2011 13:27:33 -0500 From: em...@telephonelady.com To: tmic-list@eskimo.com Subject: [TMIC] Baclofen Question Do any of you have the Baclofen pump? If so, does it help? How does it work? The neurologist is talking about my husband using this method of taking Baclofen because the spasticity in his legs is preventing him from being able to stand and is interfering with his physical therapy. Your input is appreciated. Emily Meyers --Forwarded Message Attachment-- Date: Sat, 12 Nov 2011 17:09:40 -0600 From: jan...@centurytel.net To: em...@telephonelady.com; tmic-list@eskimo.com Subject: Re: [TMIC] Baclofen Question I do not use the pump, but sure rely on Baclofen to calm the spasms in my legs. You will get more input. Janice From: Emily Sent: Saturday, November 12, 2011 12:27 PM To: 'tmic' Subject: [TMIC] Baclofen Question Do any of you have the Baclofen pump? If so, does it help? How does it work? The neurologist is talking about my husband using this method of taking Baclofen because the spasticity in his legs is preventing him from being able to stand and is interfering with his physical therapy. Your input is appreciated. Emily Meyers --Forwarded Message Attachment-- Date: Sat, 12 Nov 2011 16:21:00 -0700 From: skle...@cox.net To: jan...@centurytel.net CC: em...@telephonelady.com; tmic-list@eskimo.com Subject: Re: [TMIC] Baclofen Question I have not used the baclofen pump, but a good friend of mine,who is paralyzed from the waist down from a car accident, used one and it was without problems.Seemed to work instantly when her legs would jump.I take 3-4 baclofen every day to keep my legs in control.best of luck.Susan On Nov 12, 2011, at 4:09 PM, Janice Nichols wrote:I do not use the pump, but sure rely on Baclofen to calm the spasms in my legs. You will get more input.Janice From: EmilySent: Saturday, November 12, 2011 12:27 PMTo: 'tmic'Subject: [TMIC] Baclofen Question Do any of you have the Baclofen pump? If so, does it help? How does it work? The neurologist is talking about my husband using this method of taking Baclofen because the spasticity in his legs is preventing him from being able to stand and is interfering with his physical therapy. Your input is appreciated. Emily Meyers --Forwarded Message Attachment-- Date: Sat, 12 Nov 2011 17:23:53 -0600 From: jan...@centurytel.net To: skle...@cox.net CC: em...@telephonelady.com; tmic-list@eskimo.com Subject: Re: [TMIC] Baclofen Question Susan, what times of the day/evening do you take your Baclofen? Janice From: Susan Kleinz Sent: Saturday, November 12, 2011 5:21 PM To: Janice Nichols Cc: em...@telephonelady.com ; 'tmic' Subject: Re: [TMIC] Baclofen Question I have not used the baclofen pump, but a good friend of mine, who is paralyzed from the waist down from a car accident, used one and it was without problems. Seemed to work instantly when her legs would jump. I take 3-4 baclofen every day to keep my legs in control. best of luck. Susan On Nov 12, 2011, at 4:09 PM, Janice Nichols wrote: I do not use the pump, but sure rely on Baclofen to calm the spasms in my legs. You will get more input. Janice From: Emily Sent: Saturday, November 12, 2011 12:27 PM To: 'tmic' Subject: [TMIC] Baclofen Question Do any of you have the Baclofen pump? If so, does it help? How does it work? The neurologist is talking about my husband using this method of taking Baclofen because the spasticity in his legs is preventing him from being able to stand and is interfering with his physical therapy. Your input is appreciated. Emily Meyers --Forwarded Message Attachment-- Date: Sun, 13 Nov 2011 00:23:48 -0600 From: bpe...@austin.rr.com To: tmic-list@eskimo.com Subject: OT - Re: [TMIC] re marieke dufresne
[TMIC] re marieke dufresne
does anyone have her email please?
[TMIC] Invitation to connect on LinkedIn
LinkedIn gerry surette requested to add you as a connection on LinkedIn: -- Kevin, I'd like to add you to my professional network on LinkedIn. - gerry Accept invitation from gerry surette http://www.linkedin.com/e/hmz8rt-gmhvi23c-43/3Hy25JT5fhtKUL-WKbDw5pS3xV-xiC4_/blk/I1268046461_3/1BpC5vrmRLoRZcjkkZt5YCpnlOt3RApnhMpmdzgmhxrSNBszYPnP4Sd3oQc3wScz59bQVKiPB1e4FUbP8QcjAOcjsVdz8LrCBxbOYWrSlI/EML_comm_afe/ View invitation from gerry surette http://www.linkedin.com/e/hmz8rt-gmhvi23c-43/3Hy25JT5fhtKUL-WKbDw5pS3xV-xiC4_/blk/I1268046461_3/3dvcjoQdzgMe3oOckALqnpPbOYWrSlI/svi/ -- DID YOU KNOW LinkedIn can help you find the right service providers using recommendations from your trusted network? Using LinkedIn Services, you can take the risky guesswork out of selecting service providers by reading the recommendations of credible, trustworthy members of your network. http://www.linkedin.com/e/hmz8rt-gmhvi23c-43/svp/inv-25/ -- (c) 2011, LinkedIn Corporation
[TMIC] Dextromethorphan
Like most of us we suffer PAIN most of the day and nights. I am fed up with it. My neuro prescribed hyromorhine. my family dr. says the this drug is highly addictive. it helps a lot. now Dr. Frank suggested Dextromethorphan as a substitute. Does anyone take this. ?what are tour side effects? what dosage do you take? please advise as my prebscription for hydromorhine must be renewed.
[TMIC] FW: [Bestjokelist] Fw: CALMNESS IN OUR LIVES
CALMNESS IN OUR LIVES I am passing this on to you because it definitely works, and we could all use a little more calmness in our lives. By following simple advice heard on the Dr. Phil show, you too can find inner peace. Dr Phil proclaimed, The way to achieve inner peace is to finish all the things you have started and have never finished. So, I looked around my house to see all the things I started and hadn't finished, and before leaving the house this morning, I finished off a bottle of Cabernet Sauvignon, a bottle of Bailey's Irish Cream, a package of Oreos, the remainder of my old Prozac prescription, the rest of the cheesecake, some Doritos, and a box of chocolates, and finally a half bottle of Scotch. You have no idea how freaking good I feel right now. Pass this on to those who you think might be in need of inner peace. ___ Bestjokelist mailing list http://naftolin.com/mailman/listinfo/bestjokelist_naftolin.com
[TMIC] RE: tmic-digest Digest V2010 #680
Kevin an alternative to gabapentin is Lyrica. have you ever tried it. also the symptoms of drowyness and other side effects with gabapentin usually go away after a few days gerry in snowy snowy Montreal Date: Sat, 4 Dec 2010 20:38:08 -0800 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2010 #680 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest Digest Volume 2010 : Issue 680 Today's Topics: [TMIC] RE: tmic-digest Digest V2010 [ Gerry Surette suret...@sympatico.c ] --Forwarded Message Attachment-- Date: Sat, 4 Dec 2010 16:18:15 -0500 From: suret...@sympatico.ca To: tmic-list@eskimo.com Subject: [TMIC] RE: tmic-digest Digest V2010 #678 hi Candy here is a suggestion re gabaptentin; after consulting with your neuro have your dosage increase gradually until you hardly have any pain; together with the gabapentin also get a prescription for baclofin. be careful though as baclofin may have adverse affect on your liver. as well take zanaflex for spascity. my dosage is a follows :800mg of gabapentin three times a day; 20 mg. of baclofin twice daily and 4 mg zanaflex 3 times daily. it took me a few months of trial and error always with the neuro's guidance to get the doasge right. hope this helps gerry in snowy Montreal Date: Sat, 4 Dec 2010 10:38:01 -0800 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2010 #678 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest Digest Volume 2010 : Issue 678 Today's Topics: Re: [TMIC] Med Question [ CANDIS KALLEY cakal...@embarqmail. ] Re: [TMIC] Med Question [ kevin weilacher hwyfli...@yahoo.co ] Fwd: [TMIC] Med Question [ CANDIS KALLEY cakal...@embarqmail. ] --Forwarded Message Attachment-- Date: Sat, 4 Dec 2010 10:55:50 -0500 From: cakal...@embarqmail.com To: tmic-list@eskimo.com Subject: Re: [TMIC] Med Question Patti, I've been on gabapentin for awhile now. It does seem to help with the cold/burning in the feet along with several other things. It doesn't however take everything completely away all the time or even sometimes! There doesn't seem to be anything that does that! TM is worst than the weather in that if you don't like it stick around it can get worse! The gabapentin does seem to make me more drowsy no matter when or how I take it! I take 300 mg 3X daily! To prevent even worse afternoons, I take 300 mg in a.m. and 600 mg at bedtime! I must admit that the night sleep seems to be better! Within 30 minutes, I'm fast asleep and usually sleep 7 hrs straight thru! Sometimes this is bad because the bladder relaxes too much and in the morning I have to change the bed! TM in a way takes us all back to a 2nd childhood - learning to walk, toddling and falling, wearing diapers, changing clothes 2 or 3X daily, and changing beding in the morning! If it wasn't for all the pain, I'd feel like a 1 year old! Always wanted to do it over again but I had imagined starting back in the teens - I'd give TM up in heartbeat for a REAL BAD case of acne anyday! Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Patricia Cooley patticoole...@gmail.com To: TMIC-LIST@eskimo.com Sent: Saturday, December 4, 2010 10:39:58 AM Subject: [TMIC] Med Question On Thursday I saw a new doctor, a physiatrist (sp), that my neuro recommended. I am very impressed with him and his care which was very thorough. When I mentioned my freezing/burning and pain n my feet, he gave me a script for gabapentin. My previous neuro always said there was nothing I could take. I know many of who have mentioned it previously. I took my first capsule last night when I went to bed. This morning I feel so groggy, like I had a night on the town last night. Is that common? Will it go away after I am on it for a while? Maybe I should take it earlier in the evening so the affect wears off by morning. He has also recommend that I saw a ortho who will evaluate me to see if a brace on my bad leg would help with my balance and walking. If it helps, I am game for anything. Thank you in advance for any advice you can give me. Patti - Wisconsin --Forwarded Message Attachment-- Date: Sat, 4 Dec 2010 08:07:21 -0800 From: hwyfli...@yahoo.com To: cakal...@embarqmail.com; tmic-list@eskimo.com Subject: Re: [TMIC] Med Question and then there are folks like me that Gabapentin..(Neurontin) didn't do a thingnot help the pain or burning nor even give me any side effects and I was up to 2800mg a day before my doc decided to take me off of it. Again, just goes to show you...that we are all different and react differently to meds and to TM. Here's hoping
[TMIC] RE: tmic-digest Digest V2010 #678
hi Candy here is a suggestion re gabaptentin; after consulting with your neuro have your dosage increase gradually until you hardly have any pain; together with the gabapentin also get a prescription for baclofin. be careful though as baclofin may have adverse affect on your liver. as well take zanaflex for spascity. my dosage is a follows :800mg of gabapentin three times a day; 20 mg. of baclofin twice daily and 4 mg zanaflex 3 times daily. it took me a few months of trial and error always with the neuro's guidance to get the doasge right. hope this helps gerry in snowy Montreal Date: Sat, 4 Dec 2010 10:38:01 -0800 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2010 #678 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest Digest Volume 2010 : Issue 678 Today's Topics: Re: [TMIC] Med Question [ CANDIS KALLEY cakal...@embarqmail. ] Re: [TMIC] Med Question [ kevin weilacher hwyfli...@yahoo.co ] Fwd: [TMIC] Med Question [ CANDIS KALLEY cakal...@embarqmail. ] --Forwarded Message Attachment-- Date: Sat, 4 Dec 2010 10:55:50 -0500 From: cakal...@embarqmail.com To: tmic-list@eskimo.com Subject: Re: [TMIC] Med Question Patti, I've been on gabapentin for awhile now. It does seem to help with the cold/burning in the feet along with several other things. It doesn't however take everything completely away all the time or even sometimes! There doesn't seem to be anything that does that! TM is worst than the weather in that if you don't like it stick around it can get worse! The gabapentin does seem to make me more drowsy no matter when or how I take it! I take 300 mg 3X daily! To prevent even worse afternoons, I take 300 mg in a.m. and 600 mg at bedtime! I must admit that the night sleep seems to be better! Within 30 minutes, I'm fast asleep and usually sleep 7 hrs straight thru! Sometimes this is bad because the bladder relaxes too much and in the morning I have to change the bed! TM in a way takes us all back to a 2nd childhood - learning to walk, toddling and falling, wearing diapers, changing clothes 2 or 3X daily, and changing beding in the morning! If it wasn't for all the pain, I'd feel like a 1 year old! Always wanted to do it over again but I had imagined starting back in the teens - I'd give TM up in heartbeat for a REAL BAD case of acne anyday! Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Patricia Cooley patticoole...@gmail.com To: TMIC-LIST@eskimo.com Sent: Saturday, December 4, 2010 10:39:58 AM Subject: [TMIC] Med Question On Thursday I saw a new doctor, a physiatrist (sp), that my neuro recommended. I am very impressed with him and his care which was very thorough. When I mentioned my freezing/burning and pain n my feet, he gave me a script for gabapentin. My previous neuro always said there was nothing I could take. I know many of who have mentioned it previously. I took my first capsule last night when I went to bed. This morning I feel so groggy, like I had a night on the town last night. Is that common? Will it go away after I am on it for a while? Maybe I should take it earlier in the evening so the affect wears off by morning. He has also recommend that I saw a ortho who will evaluate me to see if a brace on my bad leg would help with my balance and walking. If it helps, I am game for anything. Thank you in advance for any advice you can give me. Patti - Wisconsin --Forwarded Message Attachment-- Date: Sat, 4 Dec 2010 08:07:21 -0800 From: hwyfli...@yahoo.com To: cakal...@embarqmail.com; tmic-list@eskimo.com Subject: Re: [TMIC] Med Question and then there are folks like me that Gabapentin..(Neurontin) didn't do a thingnot help the pain or burning nor even give me any side effects and I was up to 2800mg a day before my doc decided to take me off of it. Again, just goes to show you...that we are all different and react differently to meds and to TM. Here's hoping that the Gabapentin works for you and just adjusting the time of day that you take it helps with the drowsiness. Candy...like you saidI'd give up TM for acne anydayAcne can be successfully treated...TM's hit or miss it seems. Kevin Weilacher N.E. Ohio (Canton) From: CANDIS KALLEY cakal...@embarqmail.com To: tmic-list tmic-list@eskimo.com Sent: Sat, December 4, 2010 10:55:50 AM Subject: Re: [TMIC] Med Question Patti, I've been on gabapentin for awhile now. It does seem to help with the cold/burning in the feet along with several other things. It doesn't however take everything completely away all the time or even sometimes! There doesn't seem to be anything that does that! TM is worst than the
[TMIC] RE: tmic-digest Digest V2010 #608
re bladder problems I also had such difficulties voiding; until I went to my urologist. he prescrice flomax. which has helped. having had chroinc mylelopaty I know the pain and disscomfort bladder problems can cause Date: Wed, 10 Nov 2010 08:43:08 -0800 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2010 #608 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest Digest Volume 2010 : Issue 608 Today's Topics: Re: [TMIC] hello out there[ Janice Nichols jan...@centurytel ] --Forwarded Message Attachment-- Date: Wed, 10 Nov 2010 10:38:00 -0600 From: jan...@centurytel.net To: snow121...@hotmail.com; malugss...@gmail.com; tmic-list@eskimo.com Subject: Re: [TMIC] hello out there I have painful arthritis in my lower back and my pain management doc says that the TM aggravates the arthritis and the arthritis aggravates the TM.I bet it is the same way with you.I also get injections in my back for pain.How often do you get an injection? Janice From: Carol E Sent: Wednesday, November 10, 2010 10:06 AM To: malugss...@gmail.com ; tmic-list@eskimo.com Subject: RE: [TMIC] hello out there I also have the residuals as Linda mentioned...burning, banding, weakness, bladder control. Sometimes I can void normally (pre TM) and other times I have to sit on the pot for 5 minutes to void. I feel like I am about to burst, but nothing comes out. I wiggle and wiggle and finally a slow trickle that takes maybe another 3 minutes. I would say about half the time I void normally and half of the time, I don't. This week, my back is killing me. It started Saturday with a burning itching sensation and then Sunday immense pain began about 3 inches lower, about waist level and lower. My hips hurt and painful when I stand and bear weight. I was taking Aleve for my discomfort and this week I graduated to Vicodin and Flexeril. I'm not sure, but I think my pain is from spinal stenosis and bulging disks instead of the TM. I have scheduled my 2nd Lumbar Epidural for next week, if I still need it. Would have gone this week, but I have to discontinue Plavix, aspirin and Aleve before I can get the epidural. What a zoo! Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. From: cherp...@msn.com To: malugss...@gmail.com; tmic-list@eskimo.com; snow121...@hotmail.com Subject: Re: [TMIC] hello out there Date: Tue, 9 Nov 2010 21:16:00 -0700 This is what I have been told also. My lesions can still be seen but they are inactive (C4,5,6). I was told they are like a scar. However, I've seen posts where others have been told something different. Dalton, I still have all the residuals - burning, banding, weakness - it's just that some days are better than others. It's going on 9 years for me. Hope you get to feeling better! Linda in Eagle, ID - Original Message - From: Carol E To: malugss...@gmail.com ; tmic-list@eskimo.com Sent: Tuesday, November 09, 2010 9:04 PM Subject: RE: [TMIC] hello out there Hi Dalton and all, I was 1st diagnosed with TM June 2005. I had lesions from T7-T10. Every time I have new MRI's, I am always told that I have no new lesions, but they can still see the old ones which are inactive. So I would say the lesions do not go away, they are there like a scar. Carol in Addison, IL Date: Wed, 10 Nov 2010 07:50:59 +0400 Subject: Re: [TMIC] hello out there From: malugss...@gmail.com To: jan...@centurytel.net; balmat...@aol.com; tmic-list@eskimo.com Hey, Janice! We missed you. And I missed you. Glad to have you back with us. I have a question for everyone. A recent set of MRIs showed that my spine in the thoracic was clear with no lesions or swellings. It has been one year since the diagnosis for TM. Do these lesions clear up later on, or did somebody make a mistake somewhere? Because my everyday symptoms are still weakness and pain from fingers to just above the elbow, and from toes to above the knees with banding and burning in the torso and back. And if I exercise at all, the next day I am in for day-long spasms that leave me housebound and often unable to get around without assistance of my dear part-time maid and helper. Could someone get back to me on this? Thanks a lot. Dalton From: Janice Nichols jan...@centurytel.net Date: Tue, 9 Nov 2010 19:28:29 -0600 To: Dalton Garis malugss...@gmail.com, Barbara Alma balmat...@aol.com, tmic-list@eskimo.com Subject: Re: [TMIC] hello out there I do too, Dalton.You have a different set of problems that I have not heard in other TM'ers. Sure wish you would get you act together - scares me!!! Seriously, I hope that is the last day you will have like that. Janice From: Dalton Garis mailto:malugss...@gmail.com Sent: Sunday, November 07, 2010 10:23 AM To: Barbara Alma mailto:balmat...@aol.com ; tmic-list@eskimo.com
[TMIC] RE: tmic-digest Digest V2010 #476
I also experiene burning feet pins and needle. what does one use to bring the swelling down gerry in Montreal Date: Fri, 17 Sep 2010 17:24:50 -0700 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2010 #476 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest Digest Volume 2010 : Issue 476 Today's Topics: Re: [TMIC] Feet Burns [ Dalton Garis malugss...@gmail.com ] Re: [TMIC] Feet Burns [ john snodgrass jcs...@yahoo.com ] Re: [TMIC] Back Pain [ john snodgrass jcs...@yahoo.com ] Re: [TMIC] Back Pain [ CANDIS KALLEY cakal...@embarqmail. ] --Forwarded Message Attachment-- Date: Sat, 18 Sep 2010 00:02:42 +0400 From: malugss...@gmail.com To: c...@austin.rr.com; toddtm2...@sbcglobal.net; tmic-list@eskimo.com Subject: Re: [TMIC] Feet Burns Feet burning; Not for me, but they do go numb a lot. I have to watch when I get up because sometimes I can’t feel my feet so must use my eyes for balance. Dalton From: c...@austin.rr.com Reply-To: c...@austin.rr.com Date: Fri, 17 Sep 2010 19:53:58 + To: Todd Tarno toddtm2...@sbcglobal.net, TMIC tmic-list@eskimo.com Subject: Re: Re: Fw: Re: [TMIC] Feet Burns Resent-From: tmic-list@eskimo.com Resent-Date: Fri, 17 Sep 2010 12:53:15 -0700 I think you are right about that Todd because I can feel the burning subside when I put on my support hose. It will also cause my urine bag to fill faster as my legs give up the water from being squeezed by the hose. Just something I noticed after I started wearing hose a few years agoCody in Austin Sent from my BlackBerry® wireless device From: Todd Tarno toddtm2...@sbcglobal.net Date: Fri, 17 Sep 2010 12:28:06 -0700 (PDT) To: TMICtmic-list@eskimo.com Subject: Fw: Re: Fw: Re: [TMIC] Feet Burns I have been told by my doctor that, Our feet burns more when our feet are swollen, as the swelling goes down, our feet will not burn as much. I have notice that my feet are now only 50% swollen and I do believe the burning is 50% less. Todd --- On Thu, 9/16/10, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: Fw: Re: [TMIC] another wonderful night To: Janet Dunn j.d...@shaw.ca, 'Akua' a...@artfarm.com, tmic-list@eskimo.com Date: Thursday, September 16, 2010, 10:47 PM I have similar feelings too in my feet.A couple of weeks ago I spilt some juice on my foot and my neice grabbed a cloth and started washing it off. My foot really started spasming - scared us both. I hate it when I am walking and the bottom of my foot will start to spasm - it almost makes you fall. Janice From: Janet Dunn http://us.mc822.mail.yahoo.com/mc/compose?to=j.d...@shaw.ca Sent: Thursday, September 16, 2010 9:52 PM To: 'Akua' http://us.mc822.mail.yahoo.com/mc/compose?to=a...@artfarm.com ; tmic-list@eskimo.com http://us.mc822.mail.yahoo.com/mc/compose?to=tmic-l...@eskimo.com Subject: RE: Fw: Re: [TMIC] another wonderful night My feet burn too, in fact, lately I cannot dry the bottoms of them with a towel as it causes a very uncomfortable feeling. I do know that since I have been taking 150mg of Lyrica 2x a day, the burning is not so bad. They are just cold all the time. Even when it is smokin hot outside, the feet, they stay cold! Janet From: Akua [mailto:a...@artfarm.com] Sent: September 16, 2010 5:45 PM To: tmic-list@eskimo.com http://us.mc822.mail.yahoo.com/mc/compose?to=tmic-l...@eskimo.com Subject: Re: Fw: Re: [TMIC] another wonderful night . I do feel both of my feet feel like there should be flames coming off my feet. lol Hope this helps, Todd in CC, TX my feet BURN too! Akua in the southenr finger lakes, NY -- --Forwarded Message Attachment-- Date: Fri, 17 Sep 2010 14:07:39 -0700 From: jcs...@yahoo.com To: malugss...@gmail.com CC: tmic-list@eskimo.com Subject: Re: [TMIC] Feet Burns my feet burn and my legs also. However my right foot looks swollen, but my left foot and legs do not. From: Dalton Garis malugss...@gmail.com To: c...@austin.rr.com; Todd Tarno toddtm2...@sbcglobal.net; TMIC tmic-list@eskimo.com Sent: Fri, September 17, 2010 4:02:42 PM Subject: Re: [TMIC] Feet Burns Feet burning; Not for me, but they do go numb a lot. I have to watch when I get up because sometimes I can’t feel my feet so must use my eyes for balance. Dalton From: c...@austin.rr.com Reply-To: c...@austin.rr.com Date: Fri, 17 Sep 2010 19:53:58 + To: Todd Tarno toddtm2...@sbcglobal.net, TMIC tmic-list@eskimo.com Subject: Re: Re: Fw: Re: [TMIC] Feet Burns Resent-From: tmic-list@eskimo.com Resent-Date: Fri, 17 Sep 2010 12:53:15 -0700 I think you are right about that Todd because I can feel the burning subside when I put on my support hose. It will also cause my urine bag to fill faster as my legs give up the water from being squeezed by the hose. Just something I noticed after I started
[TMIC] RE: tmic-digest Digest V2010 #481
symtomsno no ! DAlton. take gabapenten for the muscles spasms; Zanaflex for the spasticity (that is what it is made for) and baclofin for relaxing the muscles. as a combination it works wonders. please trust me I experienced the same symptoms'; for depression I take Wellbutin . It is an anti depression drug. no side effects other than you can not have alcohol. no way no how. this is the third time I have mentioned this on this sight. speak to your neuro. it took me almost 2 years to get the corre t dosage. as the song says Don't give up on me baby Date: Sat, 18 Sep 2010 05:58:23 -0700 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2010 #481 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest Digest Volume 2010 : Issue 481 Today's Topics: Re: [TMIC] New developments [ Dalton Garis malugss...@gmail.com ] --Forwarded Message Attachment-- Date: Sat, 18 Sep 2010 16:26:50 +0400 From: malugss...@gmail.com To: jcs...@yahoo.com; em...@telephonelady.com CC: tmic-list@eskimo.com Subject: Re: [TMIC] New developments Hey, all; I just spent from 9:00 AM to 3:00 PM spazzed out, with no control of my arms, legs, trunk, voice or facial movements. The spine between the shoulder blades was burning all day, and every time I tried to move or do anything I would lose control and couldn’t even talk. In fact attempting to talk caused the whole body to spaz. I have no idea what started it, except that I went skating yesterday and then spent most of the rest of the day tutoring my favorite subject to a willing student, the economic implications of many divine teachings. This was not one of my epileptic-like attacks which just started recently, where it starts in the head like a storm, mood changes and other things occur and is physically over quite soon. This was just a pure spasticity event. Consciousness was not altered at any time. A very nice lady who works nearby came to stay with me. She knows medical massage learned from her father who practiced medicine in an isolated Philippine village. She massaged my scalp, face, back and hands, and no doubt it helped to calm the spasticity. God bless her! You might recall my telling you all when it had been 16 days without any symptoms. Now the spasticity attacks are back, along with this new epileptic attack which takes days to recover from. Those started about one month ago and were very different from the outset from the spasticity attacks I had before. In fact, even though I termed the spasticity attacks “seizures,” because they were all over and left me helpless, I now know that they were not seizures. I know because now I get real seizures of the epilepsy type. They may only last 20-30 minutes but are far more upsetting. Consciousness is whacked, the sense of where and when is really bent, and the mood changes totally. There is an aura before if it comes on slowly, but not if induced by getting out of breath or from strobing or flashing lights and images (I don’t watch TV anymore and CRT screens are a no-no). After the seizure there are feelings of bad depression lasting for about 4-6 hours. I never get those after the spasticity attacks now, but I did before except not too badly. Maybe the TM opened some gateway to the brain so that besides the expected spasticity attacks, now these partial epileptic fits are added to the mix. Or maybe the old attacks were a combination of both spasticity and seizure, but have now diverged into distinct types, one purely physical and the other an epileptic type. A doctor told me that if the epileptic seizure involves the temporal lobe where emotions are then it would cause the mood changes. My current neurologist has no clue about any of this, so I am seeking a dedicated epilepsy doctor, since, by definition, anything more than a one-time seizure directly associated to some event such as a stroke, accident, etc. is termed “epileptic.” Any thoughts? Dalton Garis Abu Dhabi, UAE From: john snodgrass jcs...@yahoo.com Date: Fri, 17 Sep 2010 17:24:43 -0700 (PDT) To: em...@telephonelady.com Cc: transverse myelitis tmic-list@eskimo.com Subject: Re: [TMIC] New to TM Resent-From: tmic-list@eskimo.com Resent-Date: Fri, 17 Sep 2010 17:24:44 -0700 that is so classic. i remember the morning i decided it was time to go to the Dr. when i got out of bed my whole right side was numb. top of my head to the bottom of my right foot was numb. when i walked i too had to look at where i was going because it felt like the floor or steps was moving away from my feet when i steped on them. took a shower before Dr visit and was worried because thwe water was so cold. it was hitting my left leg. i put my had in it and it was hot! i turned the cold water only on and it felt hot on my left leg. my Dr too thought i was in the process of having a stroke so she sent me to ER. as things
[TMIC] RE: tmic-digest Digest V2010 #472
Emily if you have a moment watch youtube/transverse myletis. it might help to understand more about the challenges. we are all there for you and your husband olease keeo us informed and please do not hesitate to ask us questions; vent your frustrations etc. we have all been there. gerry montreal Date: Thu, 16 Sep 2010 20:58:22 -0700 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2010 #472 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest Digest Volume 2010 : Issue 472 Today's Topics: RE: Fw: Re: [TMIC] another wonderful [ Janet Dunn j.d...@shaw.ca ] [TMIC] Question [ jack...@att.blackberry.net ] RE: [TMIC] Question [ Emily em...@telephonelady.com ] [TMIC] New to TM [ Emily em...@telephonelady.com ] Re: [TMIC] Digest [ Janice Nichols jan...@centurytel ] Re: Fw: Re: [TMIC] another wonderful [ Janice Nichols jan...@centurytel ] --Forwarded Message Attachment-- Date: Thu, 16 Sep 2010 19:52:40 -0700 From: j.d...@shaw.ca To: a...@artfarm.com; tmic-list@eskimo.com Subject: RE: Fw: Re: [TMIC] another wonderful night My feet burn too, in fact, lately I cannot dry the bottoms of them with a towel as it causes a very uncomfortable feeling. I do know that since I have been taking 150mg of Lyrica 2x a day, the burning is not so bad. They are just cold all the time. Even when it is smokin hot outside, the feet, they stay cold! Janet From: Akua [mailto:a...@artfarm.com] Sent: September 16, 2010 5:45 PM To: tmic-list@eskimo.com Subject: Re: Fw: Re: [TMIC] another wonderful night . I do feel both of my feet feel like there should be flames coming off my feet. lol Hope this helps, Todd in CC, TX my feet BURN too! Akua in the southenr finger lakes, NY-- --Forwarded Message Attachment-- Date: Fri, 17 Sep 2010 03:56:38 + From: jack...@att.blackberry.net To: tmic-list@eskimo.com Subject: [TMIC] Question What's the difference between idopathic tm and just tm ? Diagnosed with idopathic tm 2007 -memphis tn. :) Sent via BlackBerry by ATT --Forwarded Message Attachment-- Date: Thu, 16 Sep 2010 23:07:26 -0400 From: em...@telephonelady.com To: tmic-list@eskimo.com Subject: RE: [TMIC] Question Idiopathic means they don't know what caused the TM. -Original Message- From: jack...@att.blackberry.net [mailto:jack...@att.blackberry.net] Sent: Thursday, September 16, 2010 11:57 PM To: TMIC Subject: [TMIC] Question What's the difference between idopathic tm and just tm ? Diagnosed with idopathic tm 2007 -memphis tn. :) Sent via BlackBerry by ATT --Forwarded Message Attachment-- Date: Thu, 16 Sep 2010 23:30:34 -0400 From: em...@telephonelady.com To: tmic-list@eskimo.com Subject: [TMIC] New to TM Thank you to everyone who responded to my initial email. It is wonderful to know that I am not in this alone. I guess misery likes company ;) Let me tell you a little about how we came to find out that my husband has TM. At the beginning of August my husband was getting constipated which is something that NEVER happens he is like clockwork each morning. After playing with this for about 1 week taking laxatives, etc. he began to get a numbing feeling in his lower left abdomen. This scared him so he made an appointment with our regular family doctor. Our doctor sent him for a cat scan of the digestive system and it was negative. Then he sent him for a colonoscopy on August 25th. On the morning of the colonoscopy he couldn’t get out of bed because his left leg was totally numb. I had a walker in the garage from a previous broken ankle so I went and got him the walker and I took him to get the colonoscopy. This frightened me so while I was waiting for him to come out of recovery I called our family doctor and told him about the total numb left leg and he said to bring him into the office the following day. The family doctor said he wanted him to go for an MRI of the lower lumbar so the following Monday (August 30th). While we were waiting for that Monday to roll around the numbing got worse and he lost all use of the leg he described as dead and he was also antsy….he couldn’t sit still or lay down….he seemed very agitated. During the early hours of August 30th he fell in the bedroom trying to use the urinal while holding onto the walker. I couldn’t get him off the floor nor could he help me because of the dead leg so I called 911. He was taken to our local hospital’s emergency ward and they cat scanned his head looking for a stroke but the cat scan was negative showing no signs of stroke. He was discharged at 8AM on August 30th and I took him directly to the MRI he was scheduled for that day. The MRI showed some stenosis in the lower lumbar region but not enough to cause this kind of numbness so our family doctor got us an emergency appointment with a neurosurgeon on
[TMIC] RE: tmic-digest Digest V2010 #460
Janice you are a God sent. very well said re emily gerry in Mtl. Date: Thu, 16 Sep 2010 09:41:14 -0700 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2010 #460 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest Digest Volume 2010 : Issue 460 Today's Topics: Re: [TMIC] New to TM [ Janice Nichols jan...@centurytel ] --Forwarded Message Attachment-- Date: Thu, 16 Sep 2010 11:21:14 -0500 From: jan...@centurytel.net To: em...@telephonelady.com; tmic-list@eskimo.com Subject: Re: [TMIC] New to TM Welcome!! We all hate the circumstances, but we welcome you and your husband with open arms. Some of the more knowledgeable of the TM'ers I am sure will weigh in on your question of support group for spouses. On the other hand, you both can and should be a part of us too.We are full of support and much information of meds we are taking, etc.We also make a good sounding board when frustration sets in. With both of you having a positive outlook, things will go much better for you. We are always here for both of you. Janice, in Missouri From: Emily Sent: Thursday, September 16, 2010 11:10 AM To: tmic-list@eskimo.com Subject: [TMIC] New to TM Hi Everyone, My husband has recently (September 2nd) been diagnosed with Idiopathic TM. He was treated at Pennsylvania Hospital under the care of a team of Neurologists. He was given mega doses of Prednisone and is currently weaning with oral prednisone. He was discharged from the hospital last Thursday and he is now working hard at an acute rehabilitation center (3-5 hours each day). He has a very positive outlook and is “taking it one day at a time”. My question is this……is there a support group for spouses of TM? Emily Life is not measured by the number of breaths that we take but by the moments that take our breath away.
RE: [TMIC] medications for spasms.
Janice; Zanaflex is used to treat spasticity From: jan...@centurytel.net To: suret...@sympatico.ca Subject: Re: [TMIC] medications for spasms. Date: Sun, 12 Sep 2010 17:10:18 -0500 Gerry, what does zanaflex do.I also take gabapentin and baclofen. Janice From: Gerry Surette Sent: Sunday, September 12, 2010 6:00 AM To: tmic-list@eskimo.com Subject: [TMIC] medications for spasms. I used to have frequent spasms sometimes quite severe. i am now spasm free. I know I get spasms but I just don't feel them. i take 800 mg. gabapentin three times daily; 25 mg. of baclofin twice daily; and 8 mg. zanaflex three times daily. this combination works for me. it took me about 2 years to get the exact dosage right. I persisted with my neuro almost to the point of scheduling my appointments every two months instead of the usual six months. my neuro balked at this as he has many patients to see. but I persisted. gabapentin for those who do not know was originally prescribe for epileptic sizures. my neuro even tried to have me switch to lyirca instead of gabapentin. Lyirica did nothing for me so I switched back. I know this combination works for me as sometimes I miss taking my pills. I then feel the spasms coming back. I felt a few side effects at the beginning but over time these rectified themselves. hope this helps. I feel for you been there did that. even got a t-shirt printed saying spasm free ( just kidding) .
[TMIC] medications for spasms.
I used to have frequent spasms sometimes quite severe. i am now spasm free. I know I get spasms but I just don't feel them. i take 800 mg. gabapentin three times daily; 25 mg. of baclofin twice daily; and 8 mg. zanaflex three times daily. this combination works for me. it took me about 2 years to get the exact dosage right. I persisted with my neuro almost to the point of scheduling my appointments every two months instead of the usual six months. my neuro balked at this as he has many patients to see. but I persisted. gabapentin for those who do not know was originally prescribe for epileptic sizures. my neuro even tried to have me switch to lyirca instead of gabapentin. Lyirica did nothing for me so I switched back. I know this combination works for me as sometimes I miss taking my pills. I then feel the spasms coming back. I felt a few side effects at the beginning but over time these rectified themselves. hope this helps. I feel for you been there did that. even got a t-shirt printed saying spasm free ( just kidding) .
[TMIC] RE: tmic-digest Digest V2010 #361
been there ; still there although taking 300 mg of quinne-odan helps somewhat. i wake up with my toes curled upwards. the pain is awesome. I then rub a535 on my feet and the pain subsides and my toes become normal. I am usually up for an hour or so I can get into bed. that is repeated about 4 or 5 times during the night haven't had a full 6 to 8 hours sleep straight about 6 years. p.s you should see my collection of books I have. Date: Wed, 11 Aug 2010 08:32:38 -0700 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2010 #361 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest Digest Volume 2010 : Issue 361 Today's Topics: Re: [TMIC] Fact Sheet on TM [ CANDIS KALLEY cakal...@embarqmail. ] [TMIC] arghhh!!! [ john snodgrass jcs...@yahoo.com ] Re: [TMIC] August Birthdays [ L T CHERPESKI cherp...@msn.com ] Re: [TMIC] arghhh!!! [ randy rankin rj_ran...@yahoo.com ] RE: [TMIC] arghhh!!! [ Janet Dunn j.d...@shaw.ca ] --Forwarded Message Attachment-- Date: Tue, 10 Aug 2010 07:53:34 -0400 From: cakal...@embarqmail.com To: TMIC-LIST@eskimo.com Subject: Re: [TMIC] Fact Sheet on TM Todd, I have my info on an Excel spreadsheet. I then did a sort on med column then dr. column which then put all the med names in alpha order by the doctor. Then each dr. can see at a glance who is prescribing what. Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Todd Tarno toddtm2...@sbcglobal.net To: CANDIS KALLEY cakal...@embarqmail.com Sent: Monday, August 9, 2010 4:04:08 PM GMT -05:00 US/Canada Eastern Subject: Re: [TMIC] Fact Sheet on TM Thanks Candy, This is a wonderful ideal, since I do have more than one doctor. You just had to ADD another column to my medication list. LOL Thanks for the info. Todd --- On Sat, 8/7/10, CANDIS KALLEY cakal...@embarqmail.com wrote: From: CANDIS KALLEY cakal...@embarqmail.com Subject: Re: [TMIC] Fact Sheet on TM To: Todd Tarno toddtm2...@sbcglobal.net Date: Saturday, August 7, 2010, 4:08 PM I also have a column of which dr. prescribed the med. Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Todd Tarno toddtm2...@sbcglobal.net To: TMIC tmic-list@eskimo.com Sent: Saturday, August 7, 2010 2:50:05 PM GMT -05:00 US/Canada Eastern Subject: Re: [TMIC] Fact Sheet on TM My medication speadsheet has the following: Medication, Date Started, Dose, Times of Day w/time of the day M, D, N ( Morning, Dinner Night), Type of Med. I believe this will cover everthing. lol Todd in CC, TX --- On Sat, 8/7/10, CANDIS KALLEY cakal...@embarqmail.com wrote: From: CANDIS KALLEY cakal...@embarqmail.com Subject: Re: [TMIC] Fact Sheet on TM To: tmic-list tmic-list@eskimo.com Date: Saturday, August 7, 2010, 10:40 AM Patti, you may also want to make a sheet on all the meds you are on. Also, the vitamins and supplements that you may be taking. I keep an Excel spreadsheet so that I can change dosages and add or delete meds as needed. I also list the dates of start/end, plus the Dr. info. This is much easier as I have found that on every visit, the questionaire asks for current meds. This way, I print the list before the visit and just say See attached. Much Much easier! Candy K. - Original Message - From: Patricia Cooley patticoole...@gmail.com To: Rev. Craig Crossman revcross...@gmail.com, tmic-list@eskimo.com Sent: Saturday, August 7, 2010 11:22:15 AM GMT -05:00 US/Canada Eastern Subject: RE: [TMIC] Fact Sheet on TM THANKS SO MUCH FOR THIS INFO. SINCE I MOVED SEVERAL MONTHS AGO, I WILL NEED TO CONNECT WITH A NEW PCP, NEUROLOGIST, AND UROLOGIST VERY SOON. SINCE THIS IS A SMALL TOWN, I WAS AFRAID THEY WOULD NOT BE AWARE OF TM. I PRINTED IT OFF AND WILL BE SURE TO TAKE WITH ME AT MY FIRST APPOINTMENT. THANKS AGAIN. PATTI - WISCONSIN From: Rev. Craig Crossman [mailto:revcross...@gmail.com] Sent: Friday, August 06, 2010 3:08 PM To: tmic-list@eskimo.com Subject: [TMIC] Fact Sheet on TM Many of you have probably already read this Fact Sheet. I find it helpful to give any physician or PA or NP that is my primary care provider since 90% of them have no idea what TM is, and it seems many don’t want to take the time to find out about it as well. What is even more aggravating is that my new neurologist (the only one within three hours travel) has no experience with it either. So she’ll get a copy as well. http://www.ninds.nih.gov/disorders/transversemyelitis Rev. Craig Crossman First Baptist Church
[TMIC] re heat'
I have good days and better days. none of this bad and worst days too negative for my taste. re heat. i am different I am SPECIAL. whether it is cold or hot. my body can not differentiate. It may be be 101 degrees. and i am shivering. or minus 20 and I am sweating. ok perspiring; whichever you prefer. my body can't tell the difference. lucky me I guess. take for instance my wanting to cuddle with my wife at night time. go on your own side of of the bed she says. you are freezing to the touch. ( so much to any thought of love making) then i feel i m freezing and wish to again cuddle with my wife only to hear her say move over you are too hot for my taste. i can't win. so be it. to make a point. life with TM is different not exciting mind you. WE feel different things at different times. the pain is constant at least it shows that we feel something other than selfpity. I hope. the best remedy i can suggest no not have an affair but live within your limitations. appreciate what you have. and hope that tomorrow you will be better. Gerry in montreal
[TMIC] helpful hints
good afternoon everyone (except those on the west coast where it is still morning) herein is an article that appeared in the recent Woman' World. yes i am an avid reader of said magazine for the following reasons 1) I enjoy the food recipes' why ( because I do all the cooking) I enjoy the helpful hints re cleaning ( As I do all the housecleaning) and 3) because I am extremely domesticated. here goes : Havin trouble getting past the little disappointments of the day? (quite appropiate for us tmers) Try glaspng your hands and reaching them over your head for a count of 10 .. this move shifts your thoughts upward toward your successes, reports show. However moving your body down - like touching your toes ( like Right I haven't been able to do that since puberty) -makes you feel more negative. WHY IT WORKS literature and movies teach us to literaly associate upward movements with achievement- that's why we say things like i feel on top of the world. Downward movements by contrast are linked to unpleasant experiences, such as down in the dumps explains study coauthor Daniel Casasanto,ph.d. hope this helps others as it has helped me between cooking and cleaning enjoy. Gerry in beautiful Montreal.
[TMIC] RE: tmic-digest Digest V2010 #321
Hear Hear ! I know exactly how you feel. you were able to put into words what many of us with TM experience every day! gerry montreal Date: Tue, 27 Jul 2010 17:01:02 -0700 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2010 #321 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest Digest Volume 2010 : Issue 321 Today's Topics: RE: [TMIC] good to see posts [ Dalton Garis malugss...@gmail.co ] --Forwarded Message Attachment-- Date: Tue, 27 Jul 2010 19:44:17 -0400 From: malugss...@gmail.com To: kimr1...@bellsouth.net; jcs...@yahoo.com; tmic-list@eskimo.com Subject: RE: [TMIC] good to see posts I feel so much luckier than most of you, because I am a 62-year-old professor; which means that, even after a fit of spasms that leave me temporarily unable to talk or use my legs, I can still write papers and continue working on a book I hope will be read (it is my second) someday soon. I can also plan my lectures around these attacks by lecturing in the morning, before they are due. Never mind that I can no longer drive and must sell my car, or that I have had to give up so many things. No one is remembered for having a great life of sports and enjoyments. Or that we liked a good cigar after dinner (I did!); or that we went to the beach in summers and knew how to enjoy ourselves. What we will be remembered for is the way we acted toward others, especially those who could do us no good; if we ever seemed to do things for others for which only the good deeds themselves would have been the payoff; that if we were religious, our religion was in our heart and not so much in our mouth; and if our talk made things easier for others, not harder. I saw my life before TM as 2-dimentional, filled with many things I enjoyed but which made no difference for others; but now I am trying to make it 3-dimensional, going upward from that surface I used to live on, to attempt to include the dimension of earning my day by doing something useful for others whenever I have the strength, even if it is just getting along with my neighbor. It doesn’t mean I reject any material aid to fight the disease I can get. Ends depend on means. So, for depression, for instance, I discovered that pushing up daily dosages of Omega-3, has ABSOLUTELY helped me fight depression. I have taken 40mg/day of Prozac for about 12 years, with only some success. But after taking large daily doses of Omega-3 I have actual jolly moments for the first time since I was 3-years-old. And I take 600 mg/day of Lyrica, to stop that feeling of being flensed from head to toe. Unfortunately, I haven’t had much luck with the fits, seizures or whatever you want to call them. Lately, they have left me dazed and wondering what happened. No matter. I have an appointment on a day not known to me or of my choosing. I imagine being behind some poor soul making excuses for not doing more to make that own little world of friends and acquaintances better off by any measure at all. “Did the news not reach you about a day like this?—from parents, friends, from studying, reading things, or hearing about it from others—nothing?” I don’t want to be in that position. I want to have anticipated it! I don’t succeed too often, but there are some nights I can lie down with satisfaction that the day went pretty well, that I was able to get something done. Maybe it’s just getting dressed and making myself presentable for the day, and that was it. This letter is too long and preachy. But I have come to the conclusion that the only difference between heaven and hell is the neighbors. Dalton From: kimr1999 [mailto:kimr1...@bellsouth.net] Sent: Tuesday, July 27, 2010 1:05 PM To: john snodgrass; transverse myelitis Subject: Re: [TMIC] good to see posts John, it is understandable to feed a Loss for what we once Had depression is one of the hardest things to admit for me (now on Cymbalta). I have tried to stay up beat and happy but have days that I just want to sleep and forget TM came into my life. But after joining this site I have come to realize I had to learn to depend on others, and use friends on this site for support. We all have different symptoms from TM but also a lot of us have the same. We are all in this together and no topic or question is off limits. We are here for each other for support, encouragement and questions. --- On Tue, 7/27/10, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: [TMIC] good to see posts To: john snodgrass jcs...@yahoo.com, transverse myelitis tmic-list@eskimo.com Date: Tuesday, July 27, 2010, 8:23 AM Have you just found this website?I am not familiar with your name. Regardless, we welcome you with open arms! You are right, the depression from TM is not clinical/chemical, it is the isolation felt from having
[TMIC]
many thanks to all for your infon on banding. gerry in montreal
[TMIC] what is banding
Iris. I would like to know what banding is and how it relates to the body thanks gerry montreal
[TMIC] RE: tmic-digest Digest V2010 #293 re zanaflex
I take 8 mg of zanaflex three times a day. I agree 100 mg seems a lot to me only side effect is extreme dry mouth Date: Sun, 11 Jul 2010 04:13:31 -0700 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2010 #293 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest Digest Volume 2010 : Issue 293 Today's Topics: Re: [TMIC][ Pieter and Heather pieterheather ] --Forwarded Message Attachment-- Date: Sat, 10 Jul 2010 21:56:37 -0600 From: pieterheat...@shaw.ca To: malugss...@gmail.com; wrabal...@gt.rr.com; tmic-list@eskimo.com Subject: Re: [TMIC] WOW Dalton. You take 100mg of Zanaflex a day??? That seems like a lot. Heather in Calgary - Original Message - From: Dalton Garis To: 'Pieter and Heather' ; 'Rebecca' ; tmic-list@eskimo.com Sent: Saturday, July 10, 2010 8:44 PM Subject: RE: [TMIC] All; My Epanutin is actually Zanaflex. I take 100 2x/day Dalton Garis Office: +971-2-607-5070/-5297 Fax: +971-2-607-2500 Mobile: +971-50-668-5760 In New York: 718-271-2738 From: Pieter and Heather [mailto:pieterheat...@shaw.ca] Sent: Saturday, July 10, 2010 5:42 PM To: Rebecca; tmic-list@eskimo.com Subject: Re: [TMIC] Rebecca, There is also the medication Zanaflex. It helps with spasms as well. I take the 40 mg of Baclofen a day then I take 4 mg of Zanaflex at bedtime too. There are others who do take more Zanaflex as well. However both the Zanaflex and the Baclofen can affect your liver enzymes so you will need to have them checked regularly as well. Heather in Calgary - Original Message - From: Rebecca To: tmic-list@eskimo.com Sent: Saturday, July 10, 2010 2:34 PM Subject: [TMIC] Thanks everyone about the baclofen dosage. I use it to stop my spasms in leg and back. At one time amputation was discussed. Then a baclofen pump. That was shot down because of open bed wounds. So botox and baclofen are going to be tried.The dosage will be 10mg 2X a day of baclofen do not know about botox. attachment: image001.jpg
[TMIC] RE: tmic-digest Digest V2010 #294
what is Dalintin what does it do? never heard of it gerry in montreal still hot and humid Date: Sun, 11 Jul 2010 05:11:01 -0700 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2010 #294 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest Digest Volume 2010 : Issue 294 Today's Topics: RE: [TMIC][ Dalton Garis malugss...@gmail.co ] --Forwarded Message Attachment-- Date: Sun, 11 Jul 2010 07:13:10 -0400 From: malugss...@gmail.com To: pieterheat...@shaw.ca; wrabal...@gt.rr.com; tmic-list@eskimo.com Subject: RE: [TMIC] Not Zanaflex but Dilantin. Sorry for the mix-up. I take 100mg Dilantin 2x/day. Dalton Garis Office: +971-2-607-5070/-5297 Fax: +971-2-607-2500 Mobile: +971-50-668-5760 In New York: 718-271-2738 From: Pieter and Heather [mailto:pieterheat...@shaw.ca] Sent: Saturday, July 10, 2010 11:57 PM To: Dalton Garis; 'Rebecca'; tmic-list@eskimo.com Subject: Re: [TMIC] WOW Dalton. You take 100mg of Zanaflex a day??? That seems like a lot. Heather in Calgary - Original Message - From: Dalton Garis To: 'Pieter and Heather' ; 'Rebecca' ; tmic-list@eskimo.com Sent: Saturday, July 10, 2010 8:44 PM Subject: RE: [TMIC] All; My Epanutin is actually Zanaflex. I take 100 2x/day Dalton Garis Office: +971-2-607-5070/-5297 Fax: +971-2-607-2500 Mobile: +971-50-668-5760 In New York: 718-271-2738 From: Pieter and Heather [mailto:pieterheat...@shaw.ca] Sent: Saturday, July 10, 2010 5:42 PM To: Rebecca; tmic-list@eskimo.com Subject: Re: [TMIC] Rebecca, There is also the medication Zanaflex. It helps with spasms as well. I take the 40 mg of Baclofen a day then I take 4 mg of Zanaflex at bedtime too. There are others who do take more Zanaflex as well. However both the Zanaflex and the Baclofen can affect your liver enzymes so you will need to have them checked regularly as well. Heather in Calgary - Original Message - From: Rebecca To: tmic-list@eskimo.com Sent: Saturday, July 10, 2010 2:34 PM Subject: [TMIC] Thanks everyone about the baclofen dosage. I use it to stop my spasms in leg and back. At one time amputation was discussed. Then a baclofen pump. That was shot down because of open bed wounds. So botox and baclofen are going to be tried.The dosage will be 10mg 2X a day of baclofen do not know about botox. attachment: image001.jpg
[TMIC] re bladder problems.
tell me about it. I just recovered from chronic myleopathy felt like passing an elephant through my penis. I somehow know what you ladies go through giving birth. anyway prior to that bout i used to go to the bathroom almost every 1 1/2 hours during the night. hardly none during the day. once the myleopathy passed i was prescribed 0.4mg of flomax cr ( for men only). I was told by the eurologist that 40 - 60% of men over 50 suffer from enlarged prostates. once I started this medication : i only take it at bedtime as it causes dizzyness. I rarely go to the bathroom maybe twice during the night. this is another great side effect of TM . what will TM think of next. Hope this helps. gerry in Montreal p.s. weather stinks no comment
[TMIC] re dosage re baclofin
I take 30mg of baclofin twice a day. please check with your neuro prior to increasing dosage; according to my neuro there could be severe damage to the liver. every case is different.I have noticed however the positive difference between taking 20 to 30 mg twice a day let us know. Have a great cool weekend Gerry in rainy hot humid Montreal
[TMIC] re dosage of baclofin
I take 30 mg of baclofin twice a day. be careful though not to increase the dosage on your own. Please check with your neuro as it can severely damage your liver. Ihave noticed a definite positive result going from 20 to mg twice a day. I asked my neuro re having a baclofin pump installed. he discouraged my going that route as there are great risks of infections. Gerry in rainly,humid hot Montreal.
[TMIC] RE: tmic-digest Digest V2010 #283
re baclofin. I presently take 30 mg. of baclofin twice a day. I spoke numerous times to my neuro re dosage. I even spoke to him about having a balofin pump installed. to answer the first part. baclofin has serious side effect especially damage to the liver. the pump was not recommended due to problems with infections. he suggested that my dosage is the max he can prescribe. here in montreal we are having a severe heat wave. not seen since august of 2007. the temp will be around 85-89 with the humidex around 105 for the rest of the week. one thing about my gorgeous body ( just kidding) is I have little control of my body temp. it could be minus 25 degrees celcious and i am hot., sometimes at night when I want to cuddle with my wife. I feel warm only to be told move over you are freezing to the touch. so be it. her lost . we with TM live with all sorts of challenges. like a box of chocolates. Every day is different. makes life exciting (ya right). that is one reason i enjoy this group. I am ecouraged by it and am able to encourage others to persevere. Have a great day Gerry Date: Tue, 6 Jul 2010 02:13:22 -0700 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2010 #283 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest Digest Volume 2010 : Issue 283 Today's Topics: Re: [TMIC] re walking with a cane [ Janice Nichols jan...@centurytel ] Re: [TMIC] I'm back! [ Janice Nichols jan...@centurytel ] Re: [TMIC] I'm back! [ Pieter and Heather pieterheather ] Re: [TMIC] I'm back! [ Lori Biehler lbieh...@earthlink. ] [TMIC] Sativex[ Regina Rummel regina...@sbcglobal. ] --Forwarded Message Attachment-- Date: Mon, 5 Jul 2010 11:43:52 -0500 From: jan...@centurytel.net To: suret...@sympatico.ca; tmic-list@eskimo.com Subject: Re: [TMIC] re walking with a cane Gerry, are you not allowed enough baclofen to control the spasms? I use that too, and it took a while to get the right amount to work, but I really like it. Of course, I realize we are all different and can tolerate only so much. I would talk to your doc and see what can be done with the baclofen. I also would HATE your weather. My body does not tolerate heat, especially with not having fans going in the rooms I am in. So, we keep the temp low, and have ceiling fans in every room. Hope you get improvement. I had to bug my doc several times for amount changes in meds to get as comfortable as I am. Hope you can too - let me know. Janice From: Gerry Surette Sent: Monday, July 05, 2010 7:49 AM To: tmic-list@eskimo.com Subject: [TMIC] re walking with a cane I too have severe nerve pain whether I walk do chores or whatever. I take gabapentin ; for nerve pain xanaflex for spasticity and baclofen the combination helps ne survive without the zanaflex i have trouble putting one foot ahead of the other, it feels like i am pulling a 30 lb. ball with every step. I too walk with a cane and use the walls for balance but outside i use a walker with a seat as I have to sit down after a few steps due to spasms. but i keep perserving as they say no pain no gain Gerry in plus 105 degrees with the humidex in montreal --Forwarded Message Attachment-- Date: Mon, 5 Jul 2010 11:50:30 -0500 From: jan...@centurytel.net To: rumc...@hotmail.com; tmic-list@eskimo.com Subject: Re: [TMIC] I'm back! Jeron, You made my day!!!Ever think you were sent to Trinidad for a reason? Your goodness and caring in reaching out to another has paid off tremendously - both for you and Christa. You are my kind of people! Janice From: j ra Sent: Monday, July 05, 2010 8:40 AM To: Transverse Myelytis Subject: [TMIC] I'm back! Hi guys, A couple of months ago I left Brasil for the Caribbean to spend some time alone and try to rediscover life before TM. It's been tough, especially because I decided to quit meds. No gabapentin, no miosan (for the shakes, think it's called xanaflex elsewhere) no valium, just sleeping pills. I know most of you thought I was pushing my wife away, but she's been really understanding as to why I needed to regain some independence. I did all the things I said I was going to do and I proved that TMers still have a lot of life in them. I know I am lucky to be a walker, allbeit with a cane, but we are strong people. As a group, we can do anything and we are always going to be there for eachotherno matter what. I really think that without you guys, I could not complete my journey, so thanks! Here's the weird part, I found a little girl with TM in Trinidad, my home country in the Caribbean. I saw an article about her in the newspapers and decided to contact her parents. I met them. The kid's name is Christa. She is 10 years old and has been diagnosed with TM some 10 months now, but her family
[TMIC] re walking with a cane
I too have severe nerve pain whether I walk do chores or whatever. I take gabapentin ; for nerve pain xanaflex for spasticity and baclofen the combination helps ne survive without the zanaflex i have trouble putting one foot ahead of the other, it feels like i am pulling a 30 lb. ball with every step. I too walk with a cane and use the walls for balance but outside i use a walker with a seat as I have to sit down after a few steps due to spasms. but i keep perserving as they say no pain no gain Gerry in plus 105 degrees with the humidex in montreal
[TMIC]
hi there; while I had chronic myletopy; I received many good wishes. thank you again for your caring and support. I have a question is the chat line still in operation if so what is the link to it. thanks Gerry in montreal
[TMIC] RE: tmic-digest Digest V2010 #197
hi Janet i know how you feel it took the dr.s close to a year to diagnoise tm I had to wait unti li was paralized to get any help Date: Wed, 19 May 2010 04:47:54 -0700 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2010 #197 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest Digest Volume 2010 : Issue 197 Today's Topics: Re: [TMIC] Neurontin [ Janice Nichols jan...@centurytel ] --Forwarded Message Attachment-- Date: Tue, 18 May 2010 22:36:24 -0500 From: jan...@centurytel.net To: j.d...@shaw.ca; pieterheat...@shaw.ca; rp...@neillsupply.com; tmic-l...@eskimo.net Subject: Re: [TMIC] Neurontin Janet, I hope you get more help from the docs for your son and that he does get off the percocet easily.Please keep us posted on both of you. Janice From: Janet Dunn Sent: Tuesday, May 18, 2010 1:00 PM To: 'Pieter and Heather' ; 'Robert Pall' ; tmic-l...@eskimo.net Subject: RE: [TMIC] Neurontin Hi Heather Thanks for asking. I just don’t know what to think. After raising the TM alarm bells (significantly), the neurologist sent a letter to the family doctor, stating that the “problem” is organic in nature. That the pain is coming from the brain itself, and not from the spinal cord lesion. That he does have reduced feeling and strength. That he does have decreased sensation. That it is not TM and not MS, but he does not know what it is. Geesh, thanks for scaring the crap out of us. He does have a lesion at T2. He does have significant pain and weakness. They have put him on Baclofen 10 mg 2 times a day, and Carbamazepine CR 200mg twice daily. The goal being to manage the pain and to get him off of the percocet. The neurologist is hoping that he will heal, as he has youth on his side. Am I angry? Yes. Am I frustrated? Yes. This young man has been dealing with this for over a year now, and it has not gotten any better, and fortunately not much worse, other than the pain. The prognosis is just what I said: hopefully he will heal. You would think, that in this day and age, when we can do so much, that somehow they could figure out what is wrong with him. So, a big thank you to all of my TM family. While this is not TM (sorry for passing that on, but that was the info that I had) this is a Spinal Cord Injury. It does not change the tears that I have shed, and will shed. I am at a loss as to what to say, do or think. Janet From: Pieter and Heather [mailto:pieterheat...@shaw.ca] Sent: May 18, 2010 10:09 AM To: Janet Dunn; 'Robert Pall'; tmic-l...@eskimo.net Subject: Re: [TMIC] Neurontin Janet, How did your son make out at the doctors? Are they going to be putting him on some meds to help with his pain? This has to be just so hard for him. Heather in Calgary - Original Message - From: Janet Dunn To: 'Robert Pall' ; tmic-l...@eskimo.net Sent: Monday, May 17, 2010 10:45 AM Subject: RE: [TMIC] Neurontin Hi Rob. I couldn’t take neurontin. I am on Lyrica, have been for four years now. 75 mg a.m. and 150 mg p.m. It has virtually stopped the banding, and the burning in the feet. I am actually going to lower the dosage to 75 twice a day. However, that has been delayed because of my “inability to pace myself” so I have paid for it with high pain levels in my legs – but not nerve pain. I am also taking effexor, welbutrin, and long acting oxycodone. I supplement that, as needed, with regular oxy during the day – so if the pain is high – then oxy during the day, or baclofen, - it is a tricky road so I monitor my symptoms constantly. I am seeing a pain specialist in Vancouver BC three times a year – he just writes a script for many months, and I fill as I see fit. That is how it works here in Fort St John. Now, with my son exhibiting what the neurologist is labeling TM, I have no idea what the doctor is going to do here in town. We will find out today – right now he is not managing his pain – he is simply coping with it – “ I am tough, I can take it” (he is 15). He takes 2 percocet in the evening so he can walk the dog – he uses a cane. Good luck with the neurontin – my money is on the lyrica and the effexor – in combination they work wonderful. I do not know what is in Cymbalta, and honestly – I will google it asap. Janet
[TMIC]
has anyone heard of chronic mylilopathy. i was recently diagagnos with it. I have had tm the second time since 2001. what is the treatment many thanks gerry in montreal. if so what is the usual treatment?
[TMIC]
[TMIC] RE: tmic-digest Digest V2009 #783
I had that problem with my bowels few years ago I mentioned it to my neuro and he prescribed oxybutynin 5 mg take two tablets at bedtime preperfably the same time every night. it took about 48 hours for it to take effect just an idea Gerry in thunderstorms in Montreal Date: Mon, 10 Aug 2009 19:30:36 -0700 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2009 #783 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest Digest Volume 2009 : Issue 783 Today's Topics: Re: [TMIC] question [ jrushton jrush...@columbiaenergy ] Re: [TMIC] question [ rj_ran...@yahoo.com ] Re: [TMIC] question [ Trudy Ogilvie mother...@gmail.com ] --Forwarded Message Attachment-- Date: Tue, 11 Aug 2009 03:12:47 -0500 From: jrush...@columbiaenergyllc.com To: anndil...@aol.com; tmic-list@eskimo.com Subject: Re: [TMIC] question Hi, Ann, I don't know about the pain but I do know that when you become constipated and your stool stays in your bowel, your body will absorb the fluids which makes the stool even harder and more uncomfortable and more difficult to extract. Having the TM aggravates the issue with all of our nerve problems especially for those of us who have no feeling in that area. Each one of us has to find our own answer to the constipation problem or we will continue suffering. It's not healthy to have that stuff stay in our system, either. Not fun, is it? Jeanne ---Original Message--- From: anndil...@aol.com Date: 8/10/2009 4:48:59 PM To: wolft...@optonline.net; tmic-list@eskimo.com Subject: Re: [TMIC] question Have a pain all the time on my right side. When I become constipated the pain becomes much worse and goes all the way up to my shoulder Ann in Virginia -Original Message- From: Kevin Wolfthal wolft...@optonline.net To: tmic-list@eskimo.com Sent: Sun, Aug 9, 2009 5:16 pm Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin --Forwarded Message Attachment-- Date: Mon, 10 Aug 2009 22:14:42 + From: rj_ran...@yahoo.com To: anndil...@aol.com; wolft...@optonline.net; tmic-list@eskimo.com Subject: Re: [TMIC] question I teach high school and have pains n my side and other places - do those count? Pardon the humor. --Original Message-- From: anndil...@aol.com To: wolft...@optonline.net To: tmic-list@eskimo.com Subject: Re: [TMIC] question Sent: Aug 10, 2009 5:48 PM Have a pain all the time on my right side. When I become constipated the pain becomes much worse and goes all the way up to my shoulder Ann in Virginia -Original Message- From: Kevin Wolfthal wolft...@optonline.net To: tmic-list@eskimo.com Sent: Sun, Aug 9, 2009 5:16 pm Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin Sent from my Verizon Wireless BlackBerry --Forwarded Message Attachment-- Date: Mon, 10 Aug 2009 22:06:56 -0400 From: mother...@gmail.com To: rj_ran...@yahoo.com CC: anndil...@aol.com; wolft...@optonline.net; tmic-list@eskimo.com Subject: Re: [TMIC] question I am right there with you! I am amazed how everything effects everything... I get terrible shooting pains down my legs when I am constipated!! Prunes, prunes and more prunes. :) Blessings! Trudy On Mon, Aug 10, 2009 at 6:14 PM, rj_ran...@yahoo.com wrote: I teach high school and have pains n my side and other places - do those count? Pardon the humor. --Original Message-- From: anndil...@aol.com To: wolft...@optonline.net To: tmic-list@eskimo.com Subject: Re: [TMIC] question Sent: Aug 10, 2009 5:48 PM Have a pain all the time on my right side. When I become constipated the pain becomes much worse and goes all the way up to my shoulder Ann in Virginia -Original Message- From: Kevin Wolfthal wolft...@optonline.net To: tmic-list@eskimo.com Sent: Sun, Aug 9, 2009 5:16 pm Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin Sent from my Verizon Wireless BlackBerry -- Everything is possible for one who believes, still more for one who hopes, even more for one who loves attachment: 01_side.gif
[TMIC]
there is a recent question regarding health care in Canada. although I can not speak for other provinces I believe the the following is a standard practice among all Canadians. When One fills out their income tax one is charged $518.00 for medical prescriptions. when one fills out their income tax if one is a low income earner the amount is adjusted downwards. I guess the best example I can use is my own experience. I am allowed a maximun of $77.20 per month in prescription. anything over and above that is free or a a minimun cost for example the following is my own order place on July 31st . I must note here that I also have ITP metaformin amount 13.59 due 13.59 znaflex $145.10 due 47.36 baclofen 28.04 due $ 8.97 gabapentine $95.37 due $9.61 azayhioprine $33.60 due $00.00 total due 79.53 total amount charged without insurance $302.11 My wife's prescriptions are also included. and that is only one of bymonthly orders of meds. regarding health care as seen as various american tv infocommercials Canadians do not not go without necesary care . If per chance a needed operation cannot be performed in a province one is referred to another. if the operation cannot be performed in Canada but is available in the USA then the patient is referred to the medical center closest to the patient. all the costs are borne by our healthcare system. it is true that certain operations albiet necessaRY BUT NOT URGENT ARE POSTPONE UNTIL FACILITIES ARE AVAILABle. yes our waiting lists are long and for some of us we must wait. no one is denied hospital care no one regardless of their financial circumstances . everyone is treated equally. that is our healthcare system as a quebecer I also have access to the clsc a provincail body dedicated to the wellbeing of those of us who have disabilities. they came in accessed my situatioon and provided me WITHOUT ANY OUT OF POCKET EXPENSE. the following adjusted our bedroom to make it easier to climb in and out. they adjusted our bathroom to accomodate my entering and getting out including a special shower accessable in a sitting position. handle bars a raised toilet seat to make it easier to get up and down the list goes on a walker retail $549.00 with a seat as I get spasms every few steps. the list goes on. including a Physitherapist who comes in on a regular bases to do exercises with me. a clsc nurse who comes here to my apartment to take my blood give me my shots . including flu shots all at no cost to me. in Montreal I also have access to ADATPA BUS which will pick me up and bring me to any appointemt anywhere in Montreal at a total cost of $2.00 per trip. yes many of you americans feel that this is sociallized medicine but those who can afford the cost pay those who can't don't. I realize our health care system isn't perfect but to me and many others who suffer and have very limited income it is a welcome relief from our every day expenses. I hope this somewhat clarifies our situation her north of 60
[TMIC] FW: A Small Request
THIS IS PRETTY NEAT. 93% won't forward A small request.. Just one line Dear God, I pray for the cure of transverse myletis . Amen All you are asked to do is keep this circulating. Even if it's only to one more person. In memory of anyone you know who has been struck down by cancer or is still living with it. A Candle Loses Nothing by Lighting Another Candle.. Please Keep This Candle Going attachment: image001.gif
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[TMIC] anyone out there?
Re: [TMIC] OT: Shower mod questions
I have double shower on on the wall and one hand lelh which shuts on and off. It is called clark 2200. it is supplied for disabled people who can not stand while having one for my spouse who can -- From: Kevin Wolfthal wolft...@optonline.net Sent: Saturday, January 31, 2009 7:04 PM To: tmic-list@eskimo.com Subject: [TMIC] OT: Shower mod questions Does anyone know of a handheld shower sprayer where the water flow can be completely shut off from the handheld sprayer? In doing some searches, I found what looks like a nice unit: Moen Home Care Hand Held Shower, but it only turns the spray lower. Thanks! Kevin
Re: [TMIC] OT: Shower mod questions
I have a clark 2200; just go to google clark2200 it is great. one shower head for my wife and one for me From: Kevin Wolfthal wolft...@optonline.net To: montzma...@aol.com, tmic-list@eskimo.com Subject: Re: [TMIC] OT: Shower mod questions Date: Mon, 02 Feb 2009 13:35:55 -0500 Thanks Pam and everyone else who replied! I've already called two plumbing supply places, including the local Home Depot, and neither of them had one of these showerheads in stock! Is it any wonder our economy is going to ? Can't even spend money when you need to! Kevin montzma...@aol.com wrote: MY HUSBAND BEING A PLUMBING CONTRACTOR ALL HIS LIFE, NOW A INSPECTOR FOR THE STATE WOULD KNOW .I WILL ASK HIM WHEN HE GETS HOME! YOU MIGHT JUST WANT TO CALL A PLUMBING SUPPLY PLACE, THEY SHOULD BE ABLE TO HELP YOU KEVIN!! TIAD PAM!!! LATER!!! Stay up to date on the latest news - from sports scores to stocks and so much more http://aol.com?ncid=emlcntaolcom0022.
RE: [TMIC] Tuesday update (1 to 4 sleep again)
re leg wraps: this reminds me of last April when I had a spleneotomy; I woke up wearing these leggings up to my private parts: boy was I scared here I was in recovery wondering if they had done a sex change operation by mistake; the nurse then explained as you said it was to prevent blood cllots; you are right they feel great. but as soon as I got home I immediately took them off. boy those drugs they give you sure make you halucinate; hope you do get to go home; as they say there is no place like home. From: kimr1...@bellsouth.net To: tmic-list@eskimo.com Subject: [TMIC] Tuesday update (1 to 4 sleep again) Date: Tue, 27 Jan 2009 10:56:04 + Morning, well here it is 1 to 4 again! I had no clue I would be in this much painâ¦. Will have to wait on surgeon to see if I get to go home todayâ¦. Ready to get out of here. They have a tube in my neck draining and once they look at that they might be able to determine if I can go home today. Other than tired (getting used to 3 hours sleep) feeling ok, of course neck is sore. They have these compression wraps on both of my legs that squeeze my legs intermitly prevent blood clots and let me tell you they feel great, want to see if I can sneak this home! LOL So letâs home Dr Lets me go home today
Re: [TMIC] OT- The Numbers-OT
I could not agree with you more .Our life says Tom Hanks In Forrest Gump is like a box of chocolate we never know what tomorrow brings gerry in minus 25 fr in Montreal From: fr...@franksheldon.com fr...@franksheldon.com To: Trudy Ogilvie mother...@gmail.com CC: Tmic-list@eskimo.com Tmic-list@eskimo.com Subject: Re: [TMIC] OT- The Numbers-OT Date: Thu, 15 Jan 2009 09:28:31 -0500 Brrr, It's 1 degree here in Freeport, ME I'm not going unless they get a lot more portapotties. Actually, I've given up my tickets, so will be home, 20 feet from my own toilet. To get philosophical... in the preceding chapters of my life I never worried how far the next potty was from me. I never wrote Have BM on my daily agenda. I never proclaimed, with Triumph, I just had a normal BM !! I wonder what the next chapter in my life holds??? take care, or prune juice F
RE: [TMIC] Washington Post article/Intravenous immune globulin
yes I have had that treatment twice; having had ItP this procedure helped raise my white blood cell count. It didn't help me otherwise; the treament last 4 to 5 hours intravenously from 3 to 5 days at a strech. If you go to the hospital to have the trreatments my hemotologist recemmended I have someone with me on my way home. Scince the bag is keept cold prior to use they usually cover you up with a blanket. otherwise I had no side effects. the nurse who gave me the treatment was gorgeous so the day went by fast From: Trudy Ogilvie mother...@gmail.com To: C E snow121...@hotmail.com CC: tmic-list@eskimo.com Subject: [TMIC] Washington Post article/Intravenous immune globulin Date: Sun, 11 Jan 2009 13:16:24 -0500 Did anyone get a chance to read the Washington Post article I sent out. A young teenager was given intravenous immune globulin. at Children's hospital after he was diagnosed with Transverse Myelitis, when the steroids didn't work. Two weeks later he walked out and has made the basketball team at his college. I asked my neuro about this and she said that it was too late for me, but if I insisted she would help me work with Medicare (they really give you a hard time!) to give it a try. Tho she said I would have to have these infusions every 8 weeks or so for the rest of my life? She did say that she doubted very much that it would help at all. Has anyone here ever had these infusions...?? Carol I was wondering if you could talk to your neuro? Just a thought! Also I use the same quote as you but it's only on my Hotmail account.. It was nice to see it again! Trudy
Re: [TMIC] re gabapitin and Lyrica
I know you are kidding but the reality of it is that the next two storms are being formed from texas through Chicago to us . Just another benefit of NAFTA I love your sense of humor. Keep it up. Wetmer's are really special we appreciate all the good things in life. We don't take anything for granted. I take 3600mg of gabapentin daily. From: L T CHERPESKI cherp...@msn.com To: tmic-list@eskimo.com, Gerry Surette suret...@sympatico.ca Subject: Re: [TMIC] re gabapitin and Lyrica Date: Thu, 18 Dec 2008 19:59:55 -0700 Well Gerry, I think you guys up there in Canada are responsible for our snow and temperatures hovering around 5 degrees! I'm really just kidding. ( a tiny bit ) Your post about the epilepsy drugs is a little disturbing to a lot of us I'm sure. I actually take very high dose of Lamictal for seizures. One good thing I guess is that I haven't had a seizure since I've been on it for the last 5 years You are so right - every day is a challenge with TM. For me it has just become a way of life. I'm tired, I nap. I burn, I lay down. Otherwise, try to make the most of my days. We do have a wonderful support system here. It helps me feel connected - you're all very special. Hugs to all, Linda - Original Message - From: Gerry Surettemailto:suret...@sympatico.ca To: tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Wednesday, December 17, 2008 5:15 AM Subject: [TMIC] re gabapitin and Lyrica It is still snowing in Monteal; I hate it and the official winter in not even here yet. In the Montreal gazette this morning there was a brief write up as foll...@washingtonmailto:foll...@washington- Makers of epilepsy drugs must add a warning that the medicines carry a risk of suicidal thoughts or actions, US health officials said yesterday. The companies also must develop a patient-friendly guide explaning risks. the food and drug administration said. Analysis of 199 clinical trials of 11 anti-epileptic drugs found twice the risk of sudicidal behavior or thoughts with drugs compared to a placebo, the fda said. Epilepsy drugs include Pfizer Inc's Lyrica and Neurontin, (Gabapentin), GlaxoSmithKline Plc's lamictal and Johnson Johnson's topamax. maybe it is just me but as we with TM often say I feel great for the shape I am in. With our health issuses I have no time for negative thoughts or actions. Every day is a challenge. I don't look forward to the ever varying symtoms of Tm. I just accept them and make the best of it. This is why this sight for TMer.s is so Important. the support we receive and give to me is a support line I can not live without Yours thoughts and comments would be appreciated: Gerry never alone in Montreal.
Re: [TMIC] re gabapitin and Lyrica
I could not agree with you more; Rain what is that? Here in Montreal we call it snow. I'll trade you. have a very healthy xmas and a happy it not prosperous new year. gerry in Montreal Let it snow Let it ^%*^% snow. I can't wait for Spring love to all From: montzma...@aol.com To: suret...@sympatico.ca Subject: Re: [TMIC] re gabapitin and Lyrica Date: Fri, 19 Dec 2008 08:19:20 EST I AGREE WITH LINDA, I ANSWERED THIS BEFORE.SO MANY PEOPLE TAKE SEIZURE DRUGS HIGH DOSES. I HAVE BEEN ON NEURONTIN FOR FOUR YEARS NOW BUT I STARTED AT 900 MGS A DAY NOW I TAKE ONLY 600 A DAY. I WAS SUPERVISOR OF A HUGE POPULAR HOSPITAL THAT PEOPLE CAME TO FROM ALL OVER THE WORLD. IT WAS OCHSNER, I WAS THE CHARGE NURSE FOR THE DAY SHIFT OUT PATIENT IN PHYS. I HAVE NEVER HAD A SEIZURE EITHER. IF YOU READ UP ON THESE DRUGS THEY ARE USED FOR OTHER THINGS THAN EPILEPSY. IF NOT WHY WOULD OUR DOCTORS SO MANY GIVE THEM TO US? I GAVE ALOT OF INJECTIONS WITH PEOPLE WHO WHERE DEPRESSED ARE HAD A REALLY BAD PROBLEM, BIPOLAR, MANIC DEPRESSIVE, COMPULSIVE DISORDERS AND ALOT OF OTHER MENTAL ILLNESSES.THEY ALSO HAD THE LABEL THAT YOU COULD BECOME SUICIDAL. PROZAC WAS ONE OF THE BIG ONES THAT SO MANY PATIENTS WHERE ON. IF YOU READ EVERY SIDE EFFECT YOU CAN GET FROM A DRUG I WOULD NOT TAKE ANY MUCH LESS GIVE THEM TO MY PATIENTS. PEOPLE ON THE LIST ARE ALL VERY SMART AND THATS WHY THIS IS OUR LIFELINE. I CANNOT TAKE LYRICA BUT I CAN TAKE NEURONTIN.OUR BODY CHEMISTRIES ARE ALL VERY DIFFERENT. PLUS IT DEPENDS ON WHAT YOUR CONDITION IS ALSO. THATS MY TWO CENTS WORTH IT IS IN THE 70 S HERE NOW WITH RAIN. WE HAD SNOW IT WAS SO BEAUTIFUL LAST WEEK. FOR XMAS IT WILL BE IN THE 40 S THATS COLD FOR US SOUTHERN NEW ORLEANS LA PEOPLE. HAPPY HOLIDAYS TIAD PAM **One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now. (http://www.aol.com/?optin=new-dpicid=aolcom40vanityncid=emlcntaolcom0025)
Re: [TMIC] SNOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Yes it all began with Itp your memory is great. I have had ivig twice once for 3 days and another for 5 days. It raised my blood cell count to 85000 but only for a short period of time then it went down again. The only side effect with this is I am alsways sleepy. I now sleep 12 to 16 hours a day. let us hope this new medication works thanks for caring then again that is what this tm sight is all about. From: L T CHERPESKI Sent: Thursday, December 11, 2008 11:16 PM To: Gerry Surette ; Trudy Ogilvie Cc: patticoo...@wi.rr.com ; tmic-list@eskimo.com Subject: Re: [TMIC] SNOW!! Gerry, It is awesome to be inside all warm and cozy and look outside at the beautiful winter wonderland. God is quite the artist. Many prayers coming your way. Please excuse my memory, but do you also have ITP? My little granddaughter has it and it has been a battle for years. The doctors wanted to remove her spleen at one time, but my daughter really wanted to wait. Her blood count did finally come up to 50,000 but it still goes up and down. Are you still on the anti-rejection medication? If not, what is the next step? Will the doctors try IVIG? Please keep us posted as you know we need to know how you're doing. Continued prayers and positive thoughts. Try to get lots of rest. Hugs, Linda in Eagle, ID where it is supposed to snow tomorrow. It's only 18 degrees now so it should be a really fluffy snow. We need it - we haven't even had rain! - Original Message - From: Trudy Ogilvie To: Gerry Surette Cc: patticoo...@wi.rr.com ; tmic-list@eskimo.com Sent: Thursday, December 11, 2008 8:21 PM Subject: Re: [TMIC] SNOW!! Gerry, You've got the prayers and positive thoughts... especially with this group... That's exactly how I like my snow in front of a fireplace.. tonight we are getting deluged with rain here in Northern Va. With all that we have yet to do for Christmas I guess rain is the best thing right now... Take care of yourself and know you are in my prayers.. Trudy On Thu, Dec 11, 2008 at 3:13 PM, Gerry Surette suret...@sympatico.ca wrote: We in Montreal have received 10 inches of snow 3 inches of freezing rain then another 3 inches of snow. tonight and tomorrow another 8 inches of snow. I love seeing it on the ground it is beautiful; being housebound it is a joy to see it I regret the number of people who have to go out in this. please keep me in your prayers as my white blood count cell count has gone down to 22,000. the critical level is 25,000. I can bleed uncontrolably. I have been prescribed an anti rejection transplant pills which is suppose to prevent this. I had my spleen removed on April 29th. but Apparantly didn't work. I need all the prayes and positive thouths. otherwise I feel great for the shape I am in. gerry From: Patricia Cooley patticoo...@wi.rr.com To: montzma...@aol.com, tmic-list@eskimo.com Subject: RE: [TMIC] SNOW!! Date: Thu, 11 Dec 2008 10:59:03 -0600 Enjoy it Pam. We just had a 7 to 12 inch snow fall on Tuesday and it is COLD - in the low to mid 20's. We are scheduled to have over 100 inches of snow this year. We would be glad to send some to you so you can continue to enjoy. The kids would love it. I am waiting for Spring. Hopefully, I won't be so cold. Patti in Wisconsin From: montzma...@aol.com [mailto:montzma...@aol.com] Sent: Thursday, December 11, 2008 8:04 AM To: tmic-list@eskimo.com Subject: [TMIC] SNOW!! ITS SNOWING HERE. THE KIDS ARE OUT OF SCHOOL. YESTERDAY IT WAS IN THE 70S. THATS La. WEATHER FOR YOU! IT WILL FREEZE TONIGHT THEN BE IN THE 50S FOR THE WEEKEND. HAD A SCORT ON YESTERDAY TODAY I AM ALL BUNDLED UP. ALOT OF WRECKS THOUGH JUST FENDER BENDERS.WE DO NOT KNOW HOW TO DRIVE IN THIS WEATHER.MY HUSBAND HAD A FIT DRIVING TO WORK AS SO MANY OTHERS DID. THIS IS GREAT!!! LAST TIME WE HAD SNOW WAS IN 2004 BUT IT DID NOT STAY ON THE GROUND ARE ON OUR ROOFS. ALL THE KIDS ARE SO EXCITED!!! TIAD PAM!! _ Make your life easier with all your friends, email, and favorite sites in one place. Try http://www.aol.com/?optin=new-dpicid=aolcom40vanityncid=emlcntaolcom0 010 it now.
RE: [TMIC] SNOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
We in Montreal have received 10 inches of snow 3 inches of freezing rain then another 3 inches of snow. tonight and tomorrow another 8 inches of snow. I love seeing it on the ground it is beautiful; being housebound it is a joy to see it I regret the number of people who have to go out in this. please keep me in your prayers as my white blood count cell count has gone down to 22,000. the critical level is 25,000. I can bleed uncontrolably. I have been prescribed an anti rejection transplant pills which is suppose to prevent this. I had my spleen removed on April 29th. but Apparantly didn't work. I need all the prayes and positive thouths. otherwise I feel great for the shape I am in. gerry From: Patricia Cooley patticoo...@wi.rr.com To: montzma...@aol.com, tmic-list@eskimo.com Subject: RE: [TMIC] SNOW!! Date: Thu, 11 Dec 2008 10:59:03 -0600 Enjoy it Pam. We just had a 7 to 12 inch snow fall on Tuesday and it is COLD - in the low to mid 20's. We are scheduled to have over 100 inches of snow this year. We would be glad to send some to you so you can continue to enjoy. The kids would love it. I am waiting for Spring. Hopefully, I won't be so cold. Patti in Wisconsin From: montzma...@aol.com [mailto:montzma...@aol.com] Sent: Thursday, December 11, 2008 8:04 AM To: tmic-list@eskimo.com Subject: [TMIC] SNOW!! ITS SNOWING HERE. THE KIDS ARE OUT OF SCHOOL. YESTERDAY IT WAS IN THE 70S. THATS La. WEATHER FOR YOU! IT WILL FREEZE TONIGHT THEN BE IN THE 50S FOR THE WEEKEND. HAD A SCORT ON YESTERDAY TODAY I AM ALL BUNDLED UP. ALOT OF WRECKS THOUGH JUST FENDER BENDERS.WE DO NOT KNOW HOW TO DRIVE IN THIS WEATHER.MY HUSBAND HAD A FIT DRIVING TO WORK AS SO MANY OTHERS DID. THIS IS GREAT!!! LAST TIME WE HAD SNOW WAS IN 2004 BUT IT DID NOT STAY ON THE GROUND ARE ON OUR ROOFS. ALL THE KIDS ARE SO EXCITED!!! TIAD PAM!! _ Make your life easier with all your friends, email, and favorite sites in one place. Try http://www.aol.com/?optin=new-dpicid=aolcom40vanityncid=emlcntaolcom0 010 it now.
[TMIC] Fw: relax
This is a cute one, had to pass it on!! ---Original Message--- RELAX!!! TO ALL MY 'NUTTY' FRIENDS Have a fabulous STRESS FREE Day! I thought everyone would appreciate and relate to Patches J Patches says Thought for the day Handle every stressful situation like a dog. Piss on it and walk away attachment: 020105~2.GIFattachment: ATT000241.gifattachment: ATT000272.gifattachment: imstp_chubbicon_en_160708.gif
[TMIC] Fw: ;7%
Hello to all you out there. P-pray Uuntil Ssomething Hhappens I need this back... If you'll do this for me... I'll do it for you.. When there is nothing left but God, that is when you find out that God is all you need. Take 60 seconds and give this a shot! All you do is simply say the following small prayer for the person who sent you this. Father, God bless all my friends and loved ones in whatever it is that You know they may be needing this day! And may their life be full of your peace, prosperity and power as he/she seeks to have a closer relationship with you. Amen. Then send it on to five other people. Within hours you caused a multitude of people to pray for other people. Then sit back and watch the power of God work in your life. P. S. Five is good, but more is better. When Jesus died on the cross, he was thinking of you! If you are one of the 7% who will stand up for him, forward this with the title 7%. 93% of people won't forward this. attachment: HI_AND~3.GIFattachment: image0011.jpgattachment: image0022.gifattachment: image0033.jpgattachment: image0044.gifattachment: image0055.jpgattachment: imstp_animation_butterflies_en_020908.gif
[TMIC] Thia applies to all of us This is so beautiful. I will nevercomplain again!!!!!!
Subject: FW: Fw: This is so beautiful. I will never complain again!! This is awesome! http://www.youtube.com/watch?v=GF9wo9sVn2c ___ Multimediajokelist mailing list http://naftolin.com/mailman/listinfo/multimediajokelist_naftolin.com
RE: [TMIC] This applies to all of us This is so beautiful. I will never complain again!!!!!!
thanks I was hoping it would help. I know it helped me From: jrushton [EMAIL PROTECTED] Reply-To: jrushton [EMAIL PROTECTED] To: Diane [EMAIL PROTECTED], tmic tmic-list@eskimo.com Subject: [TMIC] This applies to all of us This is so beautiful. I will never complain again!! Date: Fri, 12 Sep 2008 00:36:24 -0500 Oh, my This is one of the most beautiful things I've ever seen and heard. Thank you for sharing! Jeanne in Dayton
Re: [TMIC] Thia applies to all of us This is so beautiful. I will nevercomplain again!!!!!!
it was my pleasure;gerry in Montreal From: Diane [EMAIL PROTECTED] To: Gerry Surette [EMAIL PROTECTED],tmic-list@eskimo.com Subject: Re: [TMIC] Thia applies to all of us This is so beautiful. I will nevercomplain again!! Date: Thu, 11 Sep 2008 13:07:33 -0400 Amazing !! Thanks Gerry Diane in Canada - Original Message - From: Gerry Surette [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Thursday, September 11, 2008 6:58 AM Subject: [TMIC] Thia applies to all of us This is so beautiful. I will nevercomplain again!! Subject: FW: Fw: This is so beautiful. I will never complain again!! This is awesome! http://www.youtube.com/watch?v=GF9wo9sVn2c ___ Multimediajokelist mailing list http://naftolin.com/mailman/listinfo/multimediajokelist_naftolin.com
[TMIC] TENS
A few weeks ago when my physio therapist was here I had a spasm in my right leg One could see my muscles protruding out of my leg. Anyway she said she was happy to see it. I certainly didn't share her feelings. She then asked me if she could correspond with my neuro. I asked her why, It was then that she mentioned TENS Transcutaneous electrical nerve stimulation. She faxed a request for TENS My Neuro said that I was receiving the maximun meds my body could endure and gave her his blessing. My Physio was here yesterday and we tried it. It sure felt good very relaxing. She said it would help confuse my my pain nerves. thus reducung or eliminating my pain when I get a spasm. The purpose of this email is to ask one and all first if they have ever heard of it and secondly if so what were the results. thank you lol to all with TM.
RE: [TMIC]
Have yiou tried gabapentin; Why are you taking 8 10 other meds. I am not an md but you should certainly check with your md. re side effects. Why do you want to try lyrica? gabapentin workes the same way as lyrica with no side effects. to me and this is my personal opinion the less drugs you take the better it is. From: robert hennessy [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] Date: Sun, 6 Jul 2008 12:31:30 -0400 thanks to everyone who replied. let me clarify some of the meds i take. 3600 milligrams of nuerotonin/day, baclofen, zanaflex, fioricet, i also take coumadin, so asperin is out of question. i also take about 9-10 other drugs for various things. do you think a switch to lyrica would be worth my time? b/c it will take awhile to get weened off the nuerotonin. _ Need to know now? Get instant answers with Windows Live Messenger. http://www.windowslive.com/messenger/connect_your_way.html?ocid=TXT_TAGLM_WL_messenger_072008
[TMIC] questions
yes ; yes ; no
[TMIC] birthdays
mine was omitted gerry 06 22 [EMAIL PROTECTED]
Re: [TMIC] relapse?
I know how you feel; I have experienced the similar symptoms.' Here is what I do AS painful as it is I force myself to walk at least 15 to 30 minuties a day. Every stept is agnoizing believe me. but I find at the end I have a somewhat relief. at nightime I experince painful spasms. But I know that if I experience pain at least I am alive. Force yourself to walk as painful as each step may be ; I was . told if not you will stop walking altogether From: [EMAIL PROTECTED] To: [EMAIL PROTECTED], tmic-list@eskimo.com Subject: Re: [TMIC] relapse? Date: Thu, 22 May 2008 12:14:08 EDT I have had episodes of numbness getting worse to wear I thought I was about to have a relapse, but it never got as bad as the original onset.It just flared up from time to time. Often being tired or not getting enough sleep had a lot to do with it, but sometimes it just happened for a while and then went back down after a few hours or days. Barbara H. _http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/) In a message dated 5/22/2008 11:17:47 AM Eastern Daylight Time, [EMAIL PROTECTED] writes: I swear it feels like I am getting worse..my right leg the past 2 or 3 days has been numb and feeling *asleep* , just like the very first day 3 years ago. My *anniversary* of getting this autoimmune disorder was yesterday.3 years nowmy leg started to feel *numb* at the foot and has progressed to right below my knee. My other foot also feels a little numb, but not too bad. I am scared. I know if I call the neuro, he will order mri's. (of which I cannot afford right nowour insurance has a huge deductible and we would almost end up paying the whole thingwhich would be $3000-$4000! )...I know sometimes you can have recurrences with TM...I guess I just didnt expert it. I'm afraid to call neuro. I'm afraid of results. I HOPE its just the weather...but I somehow I dont think so. It's not affecting my walking it just feels asleep and sorta numb. **Get trade secrets for amazing burgers. Watch Cooking with Tyler Florence on AOL Food. (http://food.aol.com/tyler-florence?video=4?NCID=aolfod000302)
Re: [TMIC] Neurontin Pain
I use gagapentin for neuropathic pain 2 pills (600) mg three times a day. I find no side effects and the liturature I have mention it numerous times. From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: Carol [EMAIL PROTECTED], tmic-list@eskimo.com Subject: Re: [TMIC] Neurontin Pain Date: Tue, 13 May 2008 09:35:22 -0400 Dear Carol, Neurontin is not a PRN (Take when needed) medicine. It is an anti-seizure med to be taken two or three times a day for weeks on end. It sounds as if you need a new neurologist. For your neuropathic pain you need something like Marinol or Dextromethorphan. Hope this helps F
RE: [TMIC] Dr's visit, just a follow up
Regina; I take baclofin for spasticity I can not walk without it. re fatigue; it is a side effect of your medication you are taking; I found that out the hard way. I asked my pharmacist to list all the side effects of the medication I was taking. lo and behold three of the8 I take have fatuque as a side effect. My problem now is dry mouth about i hour after takingZanaflex. I have tried chewing gum drinking coke( cola) drinking water; nothing seems to help does anyone have a solution? I too have duties to perform washing Ironing washing and waxing floors cleaning kitchen and bathroom; I find it difficult but I perservere as the net result of a clean aptartment mkes it worthwhile; my wife is a big help as well. she spends most of her time with her mother who is recovering from Cancer. one must have a positive attitude. If I didn't have that I don'nt think I would be around today God bless you regina and keep trying gerry From: Regina Rummel [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] Dr's visit, just a follow up Date: Fri, 9 May 2008 21:59:29 -0700 (PDT) I saw the neurologist yesterday. She suggested we increase the Neurontin to 900mg 3 times a day for a week, then increase to 1200mg three times a week. I asked about Lyrica in spite of my concerns since some of you didn't do well with it. She said Lyrica was similar to Neurontin, may work faster, is more expensive. I asked if we can take Neurontin and Lyrica together. She said yes and that surprised me. Do any of you take both? And about the spasticity in my hamstrings, she wants me to take 10mg Bicoflen before I do my exercises. Some of you made negative comments about Bicoflen, didn't you? I guess you take it as needed. I mentioned my memory slipping somewhat. I can order a brain MRI if you want to she said. But I've had TIAs that probably are the cause. It all went very fast because I type all the questions and concerns to make sure I won't forget anything. What's wrong with me? Fatigue is a 10 most of the time. Chronic fatigue is truly a handicap. I can hardly walk. My left leg is acting up big time, and so is my lower back (T10-T11 lesion). I drag myself with a walker. Every little thing is a challenge, etc.. Just lifting my left foot is a challenge. Speaking of foot, Frank was right. Prednisone will bruise you. I stopped taking it, it's poison. I refuse to give up. I cleaned all the floors of my little apartment. I cooked shrimp and pasta and steamed asparagus for me and my daughter. I watched and read the news ignoring the blurry right eye, I did this and even did that It's a big challenge to do every little thing. And tomorrow I'll work all day in the gift shop and check the inventory. Once I smear the new Channel foundation on my face, eye shadow and gloss on my lips, perhaps if I look better, I'll feel better. But back to the neurologist. She is supposed to be one of the best in Marin. But why do I feel that she can't wait to go to the next room where another patient is waiting? I honestly feel that it's because we both know that there is nothing that can be done for me. That we're both waisting our time. Took a sleeping pill and smoked some pot (medicinal of course) so I can sleep. But I feel better talking to you who is kind enough to put up with this babbling. PS. Jude, I'm thinking about you and hope you feel better and are sleeping peacefully.
[TMIC] operation
I had my spleen removed on Tuesday. everything went well. I have no pain from the surgery. A little discomfort but otherwise ok.
Re: [TMIC] operation
Some time ago my neuro noticed that that my white cell platlet count was low. He sent me to a hematologist who discouvered I had ITP this is a desease whereby my white blood cells are killing each other. Since the spleen creates antibodies around the cells to combat infection in this case the speen was actually aiding my cells destroy each other. hence my spleen had to be removed.As this operation was done laproloptically (small holes in your body) rather than incission. They have small lights and cut out small pieces of the spleen then remove them. There is no post operation pain just a little discomfort. I hope this answers your question lol gerry From: Carol [EMAIL PROTECTED] To: Gerry Surette [EMAIL PROTECTED] Subject: Re: [TMIC] operation Date: Sat, 3 May 2008 16:00:01 -0400 Gerry, So glad to hear that you are doing well with only a little discomfort. I probably missed an earlier posting from you, but if I may ask, why did you need to have the spleen removed? Best of luck to you. Carol in Culver, IN - Original Message - From: Gerry Surette [EMAIL PROTECTED] To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Saturday, May 03, 2008 2:09 PM Subject: [TMIC] operation I had my spleen removed on Tuesday. everything went well. I have no pain from the surgery. A little discomfort but otherwise ok.
RE: [TMIC] New Medication
Yes I have taking it for 4 or 5 years now in in conjunction with baclofin. I find it helps alot. From: Robert Pall [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] New Medication Date: Wed, 23 Apr 2008 16:04:21 -0400 I just started a new drug to help relieve banding. The drugs name is Tizanidine or Zanaflex. Do any of you take it or have you previously taken it. I have just started and am not up to the normal dose yet...however I am finding a noticable improvement in the banding. It is interesting that when I first started taking Lyrica I also noticed an improvement that has since not been so pronounced! Thanks! Rob in New Jersey
RE: [TMIC] New Medication
Hi Jeanne I just completed three of four five hours days receiving iv immunglobin to raise my white blood cell count. On tuesday I will have my spleen removed. otherwise happy to see spring finally arrive in montreal ; How about you? What is new? From: jrushton [EMAIL PROTECTED] To: Gerry Surette [EMAIL PROTECTED], tmic tmic-list@eskimo.com Subject: RE: [TMIC] New Medication Date: Wed, 23 Apr 2008 13:48:38 -0500 (Central Daylight Time) Gerry, how are you doing?? Jeanne ---Original Message--- From: Gerry Surette Date: 4/23/2008 3:38:39 PM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] New Medication Yes I have taking it for 4 or 5 years now in in conjunction with baclofin. I find it helps alot. From: Robert Pall [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] New Medication Date: Wed, 23 Apr 2008 16:04:21 -0400 I just started a new drug to help relieve banding. The drugs name is Tizanidine or Zanaflex. Do any of you take it or have you previously taken it. I have just started and am not up to the normal dose yet...however I am finding a noticable improvement in the banding. It is interesting that when I first started taking Lyrica I also noticed an improvement that has since not been so pronounced! Thanks! Rob in New Jersey
[TMIC] hope this makes you afyernoon
*** Bubba Those of us who spend much time in a doctor's office should appreciate this! Doesn't it seem more and more that physicians are running their practices like an assembly line? Here's what happened to Bubba: Bubba walked into a doctor's office and the receptionist asked him what he had. Bubba said: Shingles. So she wrote down his name, address, medical insurance number and told him to have a seat. Fifteen minutes later a nurse's aide came out and asked Bubba what he had. Bubba said, Shingles. So she wrote down his height, weight, a complete medical history and told Bubba to wait in the examining room. A half hour later a nurse came in and asked Bubba what he had. Bubba said, Shingles. So the nurse gave Bubba a blood test, a blood pressure test, an electrocardiogram, and told Bubba to take off all his clothes and wait for the doctor. An hour later the doctor came in and found Bubba sitting patiently in the nude and asked Bubba what he had. Bubba said, Shingles. The doctor asked, Where? Bubba said, Outside on the truck. Where do you want me to unload 'em?? ___ Bestjokelist mailing list http://naftolin.com/mailman/listinfo/bestjokelist_naftolin.com
RE: [TMIC] med question - meloxicam and baclofen
It is the opposite with me I have been on baclofin for approximately 5 years. I too felt stupid at the begining but taken in conjunction with zanaflex; I can't walk or function without them. It took approximately five changes in strengh before my neuro was pleased with the disage. The only side effects I now experience is dry mouth; The long term is that you must consult your neuro before stopping taken it; Once on it it is very dangerous to stop taken it; From: [EMAIL PROTECTED] To: randy rankin [EMAIL PROTECTED],Butcher, Bernard G (NY80) [EMAIL PROTECTED],TM Group tmic-list@eskimo.com Subject: RE: [TMIC] med question - meloxicam and baclofen Date: Tue, 8 Apr 2008 9:50:09 -0700 Yes. I can't take more than 10mg and was totally stupid at 20mg. However, I also find that pain makes me stupid since I can't concentrate on anything else. What a vicious cycle we're in! Patti Butcher wrote: Hi Patti - Do you find that Baclofen makes it difficult to think? I took it for a while, and it made me kinda stupid I couldn't do my crossword BERNARD BUTCHER -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Friday, April 04, 2008 5:43 PM To: randy rankin; TM Group Subject: Re: [TMIC] med question - meloxicam and baclofen Randy I had similar confusion with what I heard from various medical people. Dec 2003 my neuro rx'd baclofen for spasticity and the next day I had physical and occupational therapy. Both therapists told me I didn't have spasticity and wanted permission to talk with my neuro. So there I was in my TM stupor questioning who knew best. I started on the baclofen and have never discontinued it. My Neuro knew best. I am too flexible (rubbery) if I take over 10mg so he moved me to every six hours and that works for me. I couldn't have discribed it at well as Merieke's post, however, it's exactly how both the spasms and spasticity feel to me. Patti randy rankin [EMAIL PROTECTED] wrote: Ok - what's the scoop on these drugs. Have any of you all taken them? Did they help? Where there any significant side effects? I was sent to a bone doc. to have a look. He wants me to try baclofen for spasms, (i didn't know that I was having them - everyone else says that I'm not have spasms - I'm so confussed on the term spasms. - first neuro talked about my legs being spastic because they wouldn't move - he pick them up and the right leg would stick in mid area lol - he'd have to push it back down. When I mentioned spasm later, everyone would look at me oddly and say that I wasn't having spasms. Now this guy is giving me meds for spasms and says that my right leg shows signs of spasticity) He said my vert was great - mild degeneration in mid T and at L-5 S-1 - which I already knew about. The 'arthritis' is genetic/ getting older he said - but it is unusual for my age. He said my 2001 car accident didn't have anything to do with it - but my chiro told me in 01 that it would come in time because it almost always shows up in a few years after a major collision. Anyway - what's the scoop on all these meds. before I decide to go ahead and take them I just wanted find out if it is worth the time. - You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.
RE: [TMIC] med question - meloxicam and baclofen
I know; but with with my loving wife beside me who can get a word in anyway: hahah From: Butcher, Bernard G (NY80) [EMAIL PROTECTED] To: Gerry Surette [EMAIL PROTECTED],[EMAIL PROTECTED] CC: tmic-list@eskimo.com Subject: RE: [TMIC] med question - meloxicam and baclofen Date: Tue, 8 Apr 2008 15:59:58 -0400 I take Tizanidine (zaniflex) every night - I think I would have big trouble sleeping if I didn't - I get jimmy legs. Taking it during the day as prescribed by my neuro is a problem because it makes me sleepy. In the morning I sometimes have dry mouth so bad, the inside of my mouth sticks to my teeth - tough talking like that! BERNARD BUTCHER -Original Message- From: Gerry Surette [mailto:[EMAIL PROTECTED] Sent: Tuesday, April 08, 2008 3:36 PM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] med question - meloxicam and baclofen It is the opposite with me I have been on baclofin for approximately 5 years. I too felt stupid at the begining but taken in conjunction with zanaflex; I can't walk or function without them. It took approximately five changes in strengh before my neuro was pleased with the disage. The only side effects I now experience is dry mouth; The long term is that you must consult your neuro before stopping taken it; Once on it it is very dangerous to stop taken it; From: [EMAIL PROTECTED] To: randy rankin [EMAIL PROTECTED],Butcher, Bernard G (NY80) [EMAIL PROTECTED],TM Group tmic-list@eskimo.com Subject: RE: [TMIC] med question - meloxicam and baclofen Date: Tue, 8 Apr 2008 9:50:09 -0700 Yes. I can't take more than 10mg and was totally stupid at 20mg. However, I also find that pain makes me stupid since I can't concentrate on anything else. What a vicious cycle we're in! Patti Butcher wrote: Hi Patti - Do you find that Baclofen makes it difficult to think? I took it for a while, and it made me kinda stupid I couldn't do my crossword BERNARD BUTCHER -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Friday, April 04, 2008 5:43 PM To: randy rankin; TM Group Subject: Re: [TMIC] med question - meloxicam and baclofen Randy I had similar confusion with what I heard from various medical people. Dec 2003 my neuro rx'd baclofen for spasticity and the next day I had physical and occupational therapy. Both therapists told me I didn't have spasticity and wanted permission to talk with my neuro. So there I was in my TM stupor questioning who knew best. I started on the baclofen and have never discontinued it. My Neuro knew best. I am too flexible (rubbery) if I take over 10mg so he moved me to every six hours and that works for me. I couldn't have discribed it at well as Merieke's post, however, it's exactly how both the spasms and spasticity feel to me. Patti randy rankin [EMAIL PROTECTED] wrote: Ok - what's the scoop on these drugs. Have any of you all taken them? Did they help? Where there any significant side effects? I was sent to a bone doc. to have a look. He wants me to try baclofen for spasms, (i didn't know that I was having them - everyone else says that I'm not have spasms - I'm so confussed on the term spasms. - first neuro talked about my legs being spastic because they wouldn't move - he pick them up and the right leg would stick in mid area lol - he'd have to push it back down. When I mentioned spasm later, everyone would look at me oddly and say that I wasn't having spasms. Now this guy is giving me meds for spasms and says that my right leg shows signs of spasticity) He said my vert was great - mild degeneration in mid T and at L-5 S-1 - which I already knew about. The 'arthritis' is genetic/ getting older he said - but it is unusual for my age. He said my 2001 car accident didn't have anything to do with it - but my chiro told me in 01 that it would come in time because it almost always shows up in a few years after a major collision. Anyway - what's the scoop on all these meds. before I decide to go ahead and take them I just wanted find out if it is worth the time. - You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.
Re: [TMIC] RE: tmic-digest Digest V2008 #158
ITP is a disorder of the blood that affects the immune system. ITP stands for immune thrombocytopenic purpua. It occurs when your body destroys its own platelets in the same way it would destry harmful invaders susch as bacteria.Usually when bacteria are dected the body makes antibodies which then coat the bacteria, helping the immune system to destroy them. In itp the body mistakenly produces antibodies against its own platelets. The spleen is the organ in which invading bacteria coated with antibodies are destroyed because one of the functions of the spleen is to filter the blood. When antibodies mistakenly coat platelets, these platelets are also destroy in the spleen. Therefore the spleen in my case will have to be removed. From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] CC: tmic-list@eskimo.com Subject: Re: [TMIC] RE: tmic-digest Digest V2008 #158 Date: Sat, 5 Apr 2008 07:57:37 EDT What is ITP? One thing that comes and goes is a dull pain under my left rib cage. I have asked my doctor about this and have never got an answer. Linda in Pa **Planning your summer road trip? Check out AOL Travel Guides. (http://travel.aol.com/travel-guide/united-states?ncid=aoltrv000316)
Re: [TMIC] RE: tmic-digest Digest V2008 #158
thank you for your words of ecouragment ; It is truly helpful. To all of us who have TM please have your platelet count done. It is part and parcel of TM I am certainly not saying that you will get ITP my surgeon; who is cute as a button; informs me that my case is a surprise happening ; Another curve ball thrown at me; Please don't fret' I will hit the ball out of the park. hopefully the bases will be loaded and the top of the ninth inning; I love you all and am grateful to have you with me; please don't forget to pray for Jude; She is my inspiration and strenth as are all of you who have TM From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Subject: Re: [TMIC] RE: tmic-digest Digest V2008 #158 Date: Sat, 5 Apr 2008 13:04:25 EDT WOW, I KNOW WHAT IT IS LINDA BUT NEVER KNEW ANYONE THAT HAD IT. I HOPE ALL GOES WELL. YOU DO NOT HAVE TO WORRY ABOUT YOUR SPLEEN NOT BEING THERE. I KNOW MANY PATIENTS AND SOME FRIENDS WHO DO NOT HAVE A SPLEEN FOR OTHER REASONS. BUT WHITH TM AND WHY THEY REMOVE IT YOU WILL BE MONITORED CAREFULLY. I WISH YOU THE BEST AND MAY GOD BLESS YOU TIAD PAM **Planning your summer road trip? Check out AOL Travel Guides. (http://travel.aol.com/travel-guide/united-states?ncid=aoltrv000316)
RE: [TMIC] RE: tmic-digest Digest V2008 #158
no I contacted tm at the ripr old age of 21. I have had two relapses since then. I am now 60 years young ' have had tmsince 2001. It is progressive. I now have contacted ITP and have to undergo Iv immunglobulin five days a week five hours a day; prior to having my spleen removed on April 29th of this month. Life is full of surprises From: jrushton [EMAIL PROTECTED] To: Gerry Surette [EMAIL PROTECTED] Subject: RE: [TMIC] RE: tmic-digest Digest V2008 #158 Date: Fri, 4 Apr 2008 16:03:42 -0500 (Central Daylight Time) Gerry, you were also a nurse??? Jeanne ---Original Message--- From: Gerry Surette Date: 4/4/2008 2:50:57 PM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] RE: tmic-digest Digest V2008 #158 HI; this is Gerry: I am proud of you; I have been following your progress. with your daily clinical days being on your feet 10 to 12 hiours . I know how you must be feeling. been there done that. don't have the tee shirt though. I am going to have my spleen removed on the 29th of april, at the montreal general hospital. would you by any chance be doing your clinical days at that hospital? if so it would be an honor and privilege to meet you. You are an inspiraation ; I have done what you are doing with your life; I know it is hard but the rewards; as far as I am concerned ; are worth it. please keep in touch sincerely gerry From: marieke dufresne [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] RE: tmic-digest Digest V2008 #158 Date: Fri, 4 Apr 2008 19:10:59 + Spasms vs Spastic : Spasm: is a sudden, involuntary contraction of a muscle, a group of muscles, or a hollow organ, or a similarly sudden contraction of an orifice. It is sometimes accompanied by a sudden burst of pain, but is usually harmless and ceases after a few minutes. Spasmodic muscle contraction may also be due to a large number of medical conditions, however, including the dystonias. Spastic: The term generally originates from spasticity, a medical condition characterized by hypertonia, or a high degree of muscle tightness. Spasticity underlies spastic diplegia and many other forms of cerebral palsy. Spasms come and go.. being spastic, like your leg means that the muscle DOES not know how to relax at all, when put into action, so to speak. Like when your MD held your leg up and it stays there and/or slowly lowers without you doing any of the work. The baclofen will help with this and can improve your walking ability (if you are able to walk). The most COMMON side effects persist or become bothersome: Constipation; dizziness; drowsiness; fatigue; headache; nausea; sleeplessness. Your body will become accustomed to this and you start at a low dose in any case, and titrate up slowly to be able to adjust. Meloxicam is for your arthritis... it's an NSAID (nonsteroidal anti-inflammatory drug) The most COMMON side effects persist or become bothersome: Constipation; diarrhea; dizziness; gas; headache; heartburn; nausea; stomach upset; trouble sleeping. FYI www.drugs.com for when you want to look up drugs. Marieke Date: Fri, 4 Apr 2008 08:34:27 -0700 From: [EMAIL PROTECTED] Subject: tmic-digest Digest V2008 #158 To: [EMAIL PROTECTED] --Forwarded Message Attachment-- tmic-digest Digest Volume 2008 : Issue 158 Today's Topics: [TMIC] med question - meloxicam and [ randy rankin [EMAIL PROTECTED] ] [TMIC] RE: tmic-digest Digest V2008 [ marieke dufresne [EMAIL PROTECTED] ] --Forwarded Message Attachment-- Date: Thu, 3 Apr 2008 17:02:03 -0700 From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] med question - meloxicam and baclofen Ok - what's the scoop on these drugs. Have any of you all taken them? Did they help? Where there any significant side effects? I was sent to a bone doc. to have a look. He wants me to try baclofen for spasms, (i didn't know that I was having them - everyone else says that I'm not have spasms - I'm so confussed on the term spasms. - first neuro talked about my legs being spastic because they wouldn't move - he pick them up and the right leg would stick in mid area lol - he'd have to push it back down. When I mentioned spasm later, everyone would look at me oddly and say that I wasn't having spasms. Now this guy is giving me meds for spasms and says that my right leg shows signs of spasticity) He said my vert was great - mild degeneration in mid T and at L-5 S-1 - which I already knew about. The 'arthritis' is genetic/ getting older he said - but it is unusual for my age. He said my 2001 car accident didn't have anything to do with it - but my chiro told me in 01 that it would come in time because it almost always shows up in a few years after a major collision. Anyway - what's the scoop on all these meds. before I decide to go ahead and take them I just wanted find out if it is worth the time. You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.--Forwarded
Re: [TMIC] med question - meloxicam and baclofen
please rember to check with your neuro before discontinuing baclofen. the side effects could be very dangeous please see the instructions on the leaflet; From: [EMAIL PROTECTED] To: randy rankin [EMAIL PROTECTED], TM Group tmic-list@eskimo.com Subject: Re: [TMIC] med question - meloxicam and baclofen Date: Fri, 4 Apr 2008 17:43:29 -0400 Randy I had similar confusion with what I heard from various medical people. Dec 2003 my neuro rx'd baclofen for spasticity and the next day I had physical and occupational therapy. Both therapists told me I didn't have spasticity and wanted permission to talk with my neuro. So there I was in my TM stupor questioning who knew best. I started on the baclofen and have never discontinued it. My Neuro knew best. I am too flexible (rubbery) if I take over 10mg so he moved me to every six hours and that works for me. I couldn't have discribed it at well as Merieke's post, however, it's exactly how both the spasms and spasticity feel to me. Patti randy rankin [EMAIL PROTECTED] wrote: Ok - what's the scoop on these drugs. Have any of you all taken them? Did they help? Where there any significant side effects? I was sent to a bone doc. to have a look. He wants me to try baclofen for spasms, (i didn't know that I was having them - everyone else says that I'm not have spasms - I'm so confussed on the term spasms. - first neuro talked about my legs being spastic because they wouldn't move - he pick them up and the right leg would stick in mid area lol - he'd have to push it back down. When I mentioned spasm later, everyone would look at me oddly and say that I wasn't having spasms. Now this guy is giving me meds for spasms and says that my right leg shows signs of spasticity) He said my vert was great - mild degeneration in mid T and at L-5 S-1 - which I already knew about. The 'arthritis' is genetic/ getting older he said - but it is unusual for my age. He said my 2001 car accident didn't have anything to do with it - but my chiro told me in 01 that it would come in time because it almost always shows up in a few years after a major collision. Anyway - what's the scoop on all these meds. before I decide to go ahead and take them I just wanted find out if it is worth the time. - You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.
RE: [TMIC] Stiff neck
I too am 60 years young. I too HAD a stiff neck. my solution is an oval pillow. before I used this I could barely move my neck in the morning.. Scince I got the pillow. I have not had any problems. Talking about venting. I was recently diagnoised with ITP I have to undergo 5 days of five hours per day 0f Iv immunoglobulin. then they WILL HAVE MY SPLEEN TAKEN OUT. i KNOW HOW YOU FEEL BELIEVE ME. eVERY DAY IS A CHALLENGE. bUT IT IS YOUR LIFE. MAKE THE MOST OF EVERY DAY. iT IS ALL YOU HAVE. REMEBER THER ARE OTHERS SUCH AS jUDE WHO ARE GOING THROUGH MUCH WORST THAN WE ARE. From: Robert Pall [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] Stiff neck Date: Thu, 3 Apr 2008 08:55:19 -0400 As per my more recent e mails I have stated that my good leg has been exhibiting new wonderful sensations such as burning and freezing. One other item for discussion...I also notice pain and stiffness in my neck...have any other members gone thru this and if so what was the diagnosis. Lastly having had TM for more than 10 years I am having pain in my left knee...I attribute this to the way I have adapted to walking...it would not surprise me if in the near future I perhaps will need knee (hip too?) replacement. It just appears that every time I feel I have a handle on this lousy condition something else comes up...and the worst part of this is I believe as we get older (I am 60) many of our symptoms will become more pronounced as we face normal aging problems such as arthritis. Other than continually adding more and more pain meds, what are we suppose to do. Per Dr. Kerr he wants me to conduct almost all exercise in the pool..either swimming or even walking...low impact...I should have realized that years ago ..but youth is wasted on the youngOK I am thru rambling for todaythanks for letting me vent! Rob in New Jersey
RE: [TMIC] time has passed but....this is for Every1 on the TMA list
according to the latest info I receive it could be the flu(which is my case) or a reaction to vaccination From: sal r [EMAIL PROTECTED] To: tm tmic-list@eskimo.com Subject: [TMIC] time has passed butthis is for Every1 on the TMA list Date: Tue, 25 Mar 2008 11:51:23 -0700 (PDT) I know for some of us it has been a lifetime of our TM, ADEM, NMO, MS and so on...but have we ever figured what happened? I know that we all have adapted to it and forgot about it but instead of having doctors and researchers find the reason why, whats a better source then the person who actually got it..What I am getting at is that i wanted everyone on the list to recall what they did 1 month to a year before their illness...ex: vacation, car accident...just something that you think would trigger it...I was in a car accident 8 months before my onset...also i was eating a lot of fast food and red meatjust even if you dont think it was it just put it down...it may not make a difference for us as it has already happened but what if we can prevent it for our future generations? - Never miss a thing. Make Yahoo your homepage.
RE: [TMIC] So strange
I know exactly how you feel. I 've had tm since the age 0f 21 have been able to function until 2001 when I had a relapse. I too am 60 years young. My plete count has gone way down a side effect of TM after numerous treatments i now have itp. I have gone through three treatments of immunoglobiulin which have not worked. Now I have another treatment to go through to raise my plete count at which time they will remove my speen. I urge everyone to have there white blood cells plete count examined on a regular bases. Life with TM is always a daily challenge. like they say it is like a box of choclate you never know what will happen day to day. yes you have to have a positive attidude. It is your life and you only have control of it. It is up to you to decide if you will fight it or let it get to you. for me I would rather fight . It is hard but life is worth it From: Robert Pall [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] So strange Date: Mon, 24 Mar 2008 10:56:52 -0400 Just a fast topic for discussion. In my case TM is like a box of chocolates...you never know what you are going to get! It seems to me that how I feel from day to day is never the same! Some days are just terrible and some days are not so bad. I cannot point to the weather because that does not always have an effect on me. I do know if I get sick, even with a cold, my symptoms are always worse. Today is a beautiful day in sunny New Jersey and yet I feel terrible...why? For me the biggest problem is the banding on my right leg just above the knee. When it gets very bad (like today) it makes walking much more difficult and I walk with an even stiffer leg than usual. Is it possible that as our spine regenerates (even though it is a very long process...decades) we still experience changes all the time, because the feelings are somewhat different, and for TM'rs change is never good. It seems that when I start to get used to the feelings I have, and try to accept them, they suddenly change. I try to live with TM as best as I can. I try to keep a positive attitude and give thanks that I am able to work, walk and drive which so many of my fellow TM'rs cannot dobut some days are harder than others! Last week I heard from one of our group who after 11 years had a relapse. For me this is truly scary. I don't know what I would do if this happened to me. I have had TM for more than 10 years and I am now 60, which means that on top of TM I am starting to experience the problems that come with aging such as arthritis. Sometimes I feel that the only place we can go is down! Sorry for the depressing attitude...I just need to talk to the group when I feel this way and then forget about it, get back my positive attitude, and move on. Thank you for letting me vent! Rob in New Jersey
RE: [TMIC] So strange
many thanks; The procedure itself is not painful; the bone marrow retival for biopsy is uncomfortable. the side effects though of three days for five hours each day is to say the least NEVER AGAIN I had a high fever chills etc; on top of my leg and feet spasms. It was certainly a memerable week Thank God jesus was by my side as well as my wife who when I had my spams I tend to hypervenilate; the pain is so great. She is there to calm me down and help me breathe normally until my spasm ends. You all know what these are. it is TM: life is never preditable. you have to roll with the punches. You just have to be thankful that the day you have no pain is a blessing. You have to make the best of it. Sorry if I am being emotional but the is the way I feel I have to take each day as it comes and be thankful for any blessing I receive. gerry From: jrushton [EMAIL PROTECTED] To: Gerry Surette [EMAIL PROTECTED], tmic-list@eskimo.com Subject: RE: [TMIC] So strange Date: Mon, 24 Mar 2008 09:04:10 -0500 (Central Daylight Time) Gerry! I was just getting ready to ask if anyone had heard from you! You have really gone thru some rough times and now they are going to remove your spleen? Your advise is good...thank you! You are in my prayers..Jeanne in Dayton, WA ---Original Message--- From: Gerry Surette Date: 3/24/2008 10:15:02 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange I know exactly how you feel. I 've had tm since the age 0f 21 have been able to function until 2001 when I had a relapse. I too am 60 years young. My plete count has gone way down a side effect of TM after numerous treatments i now have itp. I have gone through three treatments of immunoglobiulin which have not worked. Now I have another treatment to go through to raise my plete count at which time they will remove my speen. I urge everyone to have there white blood cells plete count examined on a regular bases. Life with TM is always a daily challenge. like they say it is like a box of choclate you never know what will happen day to day. yes you have to have a positive attidude. It is your life and you only have control of it. It is up to you to decide if you will fight it or let it get to you. for me I would rather fight . It is hard but life is worth it From: Robert Pall [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] So strange Date: Mon, 24 Mar 2008 10:56:52 -0400 Just a fast topic for discussion. In my case TM is like a box of chocolates...you never know what you are going to get! It seems to me that how I feel from day to day is never the same! Some days are just terrible and some days are not so bad. I cannot point to the weather because that does not always have an effect on me. I do know if I get sick, even with a cold, my symptoms are always worse. Today is a beautiful day in sunny New Jersey and yet I feel terrible...why? For me the biggest problem is the banding on my right leg just above the knee. When it gets very bad (like today) it makes walking much more difficult and I walk with an even stiffer leg than usual. Is it possible that as our spine regenerates (even though it is a very long process...decades) we still experience changes all the time, because the feelings are somewhat different, and for TM'rs change is never good. It seems that when I start to get used to the feelings I have, and try to accept them, they suddenly change. I try to live with TM as best as I can. I try to keep a positive attitude and give thanks that I am able to work, walk and drive which so many of my fellow TM'rs cannot dobut some days are harder than others! Last week I heard from one of our group who after 11 years had a relapse. For me this is truly scary. I don't know what I would do if this happened to me. I have had TM for more than 10 years and I am now 60, which means that on top of TM I am starting to experience the problems that come with aging such as arthritis. Sometimes I feel that the only place we can go is down! Sorry for the depressing attitude...I just need to talk to the group when I feel this way and then forget about it, get back my positive attitude, and move on. Thank you for letting me vent! Rob in New Jersey
RE: [TMIC] just another gloomy day
WE all feel that way; you are not alone; by the way Please forgive me for saying this but one aspect of TM is depression; you sound as if you are experiencing some of this ARE you perhaps taking any depreesive medication; It is part and parcel of TM We are one family experiencing all that you have been going through. Consider yourself hugged.; and held in our arms. god bless you and may he give you the strenght to carry on. From: sal r [EMAIL PROTECTED] To: tm tmic-list@eskimo.com Subject: [TMIC] just another gloomy day Date: Mon, 24 Mar 2008 11:43:16 -0700 (PDT) Have you ever just felt that no matter how positive you are, it just doesnt help? this may sound funny but at this point in my life, before i keep going i am very thankful for the recovery i have made so farbut like i was saying have u ever seen those cartoons where they put a carrot in front of the horse to get it to move and the poor horse however hard he tries he just cant get it even though its so close to him...well thats how i feel...i have so much recovery (again very thankful) but however hard i try i have felt ive reached a milestone life and will not recover more then this...then i ask myself...whats the point of ongoing rehab? and i have no answer...sorry if i sound negative but need to clear my head...no one else i can talk to that will understand... - Never miss a thing. Make Yahoo your homepage.
Re: [TMIC] It's okay...
When i feel as you do I Have a perfect solution; Have a nice warm bubble
bath; I have rpoblems with my circulation; mt feet are usually purple; I
light a candle drop myself in an empty bath; { I have rpoblems
distinguishing hot and cold) let the water flow over me. Move my legs to
increase the bubbles and as James brown says in his song I feel so good.
From: Heather Pieter [EMAIL PROTECTED]
To: Robert Pall [EMAIL PROTECTED], jrushton
[EMAIL PROTECTED], Gerry Surette [EMAIL PROTECTED],
tmic-list@eskimo.com
Subject: Re: [TMIC] It's okay...
Date: Mon, 24 Mar 2008 13:29:22 -0600
Rob,
I have never counted the days since I got TM. I just go by years. For me
it is now 4 1/2 yrs. I think if I counted the days I would probably curl
up in a ball and not uncurl for a long time. Positive attitude is what we
need but as I said to Jeanne it is okay to have a little 'Pity Party for
One' every now and again. Now I'm going to figure out what 4000 days
computes to.
Have a good day
Heather in Calgary
- Original Message -
From: Robert Pall
To: jrushton ; Gerry Surette ; tmic-list@eskimo.com
Sent: Monday, March 24, 2008 12:39 PM
Subject: RE: [TMIC] It's okay...
Jeanne:
What a wonderful e mail. You are so right in your thinking! I truly
believe that only someone who has TM can appreciate what we are going thru.
I have often said to my wife that I wish she could have my TM for just 5
minutes. Then perhaps she could or would understand the horror of having a
condition which no matter how hard we try never really gets better.and
is with us 24/7 always. For me that means that nearly the past 4000 days
have been without relief! Yet I still try to maintain a positive
attitudewe either continue living or chose to start dying! I choose
life!
Rob in New Jersey
--
From: jrushton [mailto:[EMAIL PROTECTED]
Sent: Monday, March 24, 2008 12:14 PM
To: Gerry Surette; tmic-list@eskimo.com
Subject: [TMIC] It's okay...
You can be as emotional as you want, any time you want!! I think
most of us try to be 'up' and 'positive' as often as we can but there comes
a time when our old bodies just plain get bone tired and then it's time to
take the time for ourselves to rest, both physically and emotionally.
When I first came down with TM, I decided I was going to be old
Mary Poppins and choose the positive over the negative which is the way
I've always liked to live my life as often as I could...the 'cup is half
full' not 'half empty', and laugh so I don't cry? Well, that can still
work a good part of the time but by gosh, you just can't always make it!
AND it's okay!!!
Not too long ago I decided I was taking way too much Lyrica
(approved by my provider) because I didn't like the side effects. Well,
the first week was one of the worst and there were definite withdrawals
both horribly painful and emotional. One day I was on the front porch
swing just sobbing from my toes and who shows up but one of my daughters
right out of the blue. (God's doing, for sure) and I just couldn't stop
crying. It scared her to death because both my girls don't see me cry very
often. I usually laugh just to hear myself laugh (true!). Well, this was
a cleansing of the soul and a good way to get some of that 'stuff' out of
my body, I would swear. After that, I felt better, got lots of good hugs
from my daughter and Jack and I was back on my way. Sometimes we are so
hard on ourselves. God wants us to be good to ourselves so we can also be
good to others.
Jeanne
---Original Message---
From: Gerry Surette
Date: 3/24/2008 11:58:01 AM
To: [EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Subject: RE: [TMIC] So strange
many thanks; The procedure itself is not painful; the bone marrow
retival
for biopsy is uncomfortable. the side effects though of three days
for five
hours each day is to say the least NEVER AGAIN I had a high
fever chills
etc; on top of my leg and feet spasms. It was certainly a
memerable week
Thank God jesus was by my side as well as my wife who when I had
my spams I
tend to hypervenilate; the pain is so great. She is there to calm
me down
and help me breathe normally until my spasm ends. You all know
what these
are. it is TM: life is never preditable. you have to roll with
the
punches. You just have to be thankful that the day you have no
pain is a
blessing. You have to make the best of it. Sorry if I am being
emotional but
the is the way I feel I have to take each day as it comes and be
thankful
for any blessing I receive. gerry
From: jrushton [EMAIL PROTECTED]
To: Gerry Surette [EMAIL PROTECTED],
tmic-list@eskimo.com
Subject: RE: [TMIC] So strange
Re: [TMIC] just another gloomy day
been there had that; M y experience in ICU was over the xmas holidays. the ICU nurse was a god send. I was laying in bed. with tons of monitors; a catater up my penis paralyis from the lung cage down. My heart had stopped when they had tried to do a milogram. All of a sudden with two intravnous drip of demeral I felf I had to pee' The monitors went crazy; The nurse came over and asked me if I was okay; I replied that I wanted to pee. She smiled as if I was out of my mind. bearing in mind that until that moment I was parilize from the lung cage down; She said to go ahead. My caterter was not placed far enough in my pernis and I let go. The CAterter went out and I sprayed my pee like a hose. all over the machines ; She didn't know what to make of it. remember it is xmas time; no one is available. she cleaned me up and worked my legs for what seemed to be hours. I fell asleep. and remember waking up up with her at my side with a wet spnge on my lips. God bess her She did what no one else could do she gave me hope. From: jrushton [EMAIL PROTECTED] To: sal r [EMAIL PROTECTED], tmic-list@eskimo.com Subject: Re: [TMIC] just another gloomy day Date: Mon, 24 Mar 2008 12:13:40 -0500 (Central Daylight Time) I remember when I was in ICU and we were just two months from a trip we had been planning to go to Costa Rica. Even in ICU as I lay there totally paralyzed from the chest down, a tube down my throat because nothing was working in my digestive system nor my potty parts so they had to pump my stomach but oh, no!! I was in this denial that anything was wrong and even if it was it wasn't going to last!! My brother-in-law came to see me and I was oh-so deniably up in spirits and he looked me in the eye and said, Jeanne, you are not going to be able to go to Costa Rica. That next morning about 1AM while it was so dark and in the room, I lay there with Jack asleep propped up in the corner and it hit me how serious this was. How it wasn't just going to go away. How no one knew what was wrong and I was at one of the best hospitals in Washington. How I may never be any different than flat on my back for the rest of my life. No, I wasn't feeling very positive then. All of the times I had to be cathed because nothing would work and the horrible pain it caused and the numerous times they had to change my (yes) diaper. How they had to pick me up holding me under my arms because everything below that was 'dead' just to put me on a bedside commode to 'try' to see if anything would work...which it wouldn't and then all of the 'accidents'. The weeks in PT/OT where I would be dripping wet after just trying to hold myself up on the bars...oh, myit was so very hard and it seemed like it would never, ever end. Now it's been a couple years and there hasn't been a whole lot of change. I do all of my own PT only because we live an hour away and the price of gas is so high. We are blessed to have a hot tub so I can do water therapy and Jack, bless his heart, is making me a walking path so I can do a different type of PT. Sometimes at night if I have overdone the PT, I lay just writhing in pain from the spasms. I can't give up. If I do, I'll end up on my back and heck! I would miss out on too much!!! It's okay to feel blue and discouraged, Gerry, but that is where I hope all of us can kick in and help you back to blue skies and encouragement. We are here for you but most of all, our prayers are what will help you! God Bless You, dear one, Jeanne ---Original Message--- From: sal r Date: 3/24/2008 1:43:30 PM To: tm Subject: [TMIC] just another gloomy day Have you ever just felt that no matter how positive you are, it just doesnt help? this may sound funny but at this point in my life, before i keep going i am very thankful for the recovery i have made so farbut like i was saying have u ever seen those cartoons where they put a carrot in front of the horse to get it to move and the poor horse however hard he tries he just cant get it even though its so close to him...well thats how i feel...i have so much recovery (again very thankful) but however hard i try i have felt ive reached a milestone life and will not recover more then this...then i ask myself...whats the point of ongoing rehab? and i have no answer.. sorry if i sound negative but need to clear my head...no one else i can talk to that will understand... Never miss a thing. Make Yahoo your homepage.
Re: RE: [TMIC] question
Hi odile' My name is gerry; I know exatly how you and Frank feel. I f you
read my bio you wiill note the transaction in my life, What I ommited to
mention that apart from TM I also have ITP. This should be rectified this
coming Monday; I have also had prostate Cancer twice. Talk about hell on
wheels. In the forty years I have had my troubles I NEVER thought of doing
away with myself. It is my life; I am in control of my life; It is the only
purpose I have. I will not let my tribulations affect me. I always wake
up{thank God} and pray for strenght to be productive that day. It takes
about 20 to 30 minutes for my meds to take effect in the morning.This means
I heve to crawl to the bathroom first thing. I don't always reach it in
time. my laundry will attest to that. The point is I will not let it get to
me. I have something to do that day. NOTHING will will prevent me from
accomplishing it. Before I go to sleep at night I always think of something
that has to be done the next day. That is my project; \That will be the
reason for getting up.(if I slept that night).I always Pray to Jesus to give
me the strengh to carry on . He has never let me done. I am not preaching. I
am only telling you what has kept me going for the last 40 years.
From: odile connor [EMAIL PROTECTED]
To: [EMAIL PROTECTED]
CC: TMIC-list@eskimo.com
Subject: Re: RE: [TMIC] question
Date: Sat, 1 Mar 2008 16:45:11 -0700
Frank, I really enjoyed your letter. Prior to TM i was a figure skater.
hiker, mounain climber, coss county skier ,sailed, and on and on. Now I am
a fat sedentary old woman. I had chronic back pain since I was a teen, so
I
am used to pain'; what I am not used to is dragging a dead leg around.
Only one week ago I began a simple exercise program, with more challenging
stuff to come later...I am hoping to increase my mobility.
Does anyone else with TM do regular exercises? I would like some
support.some emotional support to help me stay with the very
discouraging exercise.
Cookie in Arizona
On Sat, Mar 1, 2008 at 2:39 PM, [EMAIL PROTECTED]
[EMAIL PROTECTED] wrote:
And having TM does not reduce your life span.
There are articles dealing with MS that show that the side effects can
and
do shorten the patients life.
For instance, my TM, in and of itself, will not shorten my life, but the
chronic pain will. Many people who have chronic pain commit suicide.
Don't
worry, I promise not to kill myself till next Friday.
Before TM, I rode a bicycle, cross country skied, sailed competitively,
climbed small mountains, etc, TM stopped all those exercises, so I
gained
weight and got The Metabolic Syndrome: Hypertension, Borderline
diabetes,
obesity and hyperlipidemia. They all reduce my life span, plus the
lipitor
pill caused Gout.
My sensitivity to cold sends me south for periods of time each winter.
There are many more diseases to the south: Mexico, Costa Rica.
I get cranky a lot, complain to my girl-friend, and she threatens to
plug
me with her 12 gauge, if I don't shut my trap
I'm just a time-bomb waiting to happen ! !
So, Think about how TM will indirectly shorten your life
F
Re: [TMIC] reITP
Thanks Linda; you will find the correlation of Itp and tm on page4 of the acticleTransverse myelitis: symtons, causes and diagnosis at at our own sight www.myelitis.org/tm.htm. I was surprised as you fo find that out. My neuro never mentioned it to me but sent me to an oncologist. From: L T CHERPESKI [EMAIL PROTECTED] To: tmic-list@eskimo.com,Gerry Surette [EMAIL PROTECTED] Subject: Re: [TMIC] reITP Date: Thu, 28 Feb 2008 22:06:41 -0700 Hi Gerry, thanks for letting us know that you will be in the hospital. You will definitely be in my thoughts and prayers. I like your attitude - one week of bliss, just being HIGH. That will be a nice reprieve. It's interesting that this has come up. I have TM and my granddaughter has ITP. I've gone to medical seminars on ITP with my family so I do understand about the disease. It's been a while since I've done any research and I wasn't aware of the connection of TM and ITP - except that they are both autoimmune diseases. I guess it's time for me to start researching again. I hope you have a relaxing weekend planned, then on Monday morning take a deep breath, relax and just know that God will be right there with you. Hugs, Linda - Original Message - From: Gerry Surettemailto:[EMAIL PROTECTED] To: tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Wednesday, February 27, 2008 9:45 AM Subject: [TMIC] reITP Hi everyone' As some of you know I will be entering the hospital next monday morning for an intravenous gamaglobin including a bone maroow transplant. Thuis will last five days. To backrack my plelete count is very very low. I have ITP whereby my white blood cells are killing each other off. The risk are not so high. Those of us who have TM have gone through much worst. the news is this: It is related to TM ;;; I thought it was a new complication to my life but doing some research I discovered that ITP is a directed result to TM in some people. \\\The good part of all this is that I will be so drugged up for four days that I will not feel the pain I have been experiencing for the last 7 years. It is better then cannibus. God bless One week of total bliss. no pain. just HIGH please keep me in your thoughs and prayers. Again my church is praying for Jude.The lord is with us each and everyone of us. Just look around you. your wife; your girlfriend; He sent them to us to help; comfort and don't forget to nag us as well. lol gerry [EMAIL PROTECTED]mailto:[EMAIL PROTECTED]
[TMIC] re itp
Hi everyone; I have received numerous questions regarding ITP: My wife is concerned that since I joined this site; she thinks I am having sex chats;;; Just kidding here goes; the best sight I found is itpinfo.co.uk hope this helps
RE: [TMIC] question
Hi Tracy it is I Gerry I have had tm since I was 21 had two relapses and
since 2001 have had it back with a vengence; now to answer your question.
just because your daughter{god blees her} has tm does not necessaryily mean
that she will get ms. The numerous articles I have read just SUGGEST that
the symptoms are similar THAT IS AL. There is no evidence I have
seen whereby tm leeds to ms. And having TM does not reduce your life span. I
have questioned my neuro on the subject and as all doctors do skimmed around
the subject.the best thing to do is consult your md. Since I joined this
group the subject of life span has come up. TM does not reduce life span so
I saith; so it is written soo it shall be
From: Tracey L. Black [EMAIL PROTECTED]
To: tmic-list@eskimo.com
Subject: RE: [TMIC] question
Date: Fri, 29 Feb 2008 09:24:13 -0500
Ok, now I have a question. In the link that Gerry provided us (Thanks
Gerry) I found the following:
It is also suggested in the medical literature that patients with
complete transverse myelitis (which means severe leg paralysis and
sensory loss) are less likely to develop MS than those who had a partial
or less severe case.
Has anyone on here experienced this? In case some of you don't remember,
my daughter who is now 14 was hit with TM when she was 11. She basically
had paralysis from her thighs down but also lost her bowel and bladder
function. Three years later (and a lot of hard work) she is walking with
forearm crutches and braces on her legs. I have always thought of her
case as a less severe case because she was not hit like a lot of others
with loss from her chest down or even full paralysis and according to
what I am reading it seems like she is more likely to get MS than those
that had a severe case of TM. When Ashlee first got TM (also combined
with GBS) I read about her condition and tried to get myself, my family,
and especially her prepared for the worst case scenario. We have been so
blessed that she is able to independently take care of herself, and
pretty has, since she started walking again. Now that I am reading up on
it again, I am really concerned.
Any insight would be greatly appreciated!
Tracey L. Black
Certified Insurance Service Representative
Hockley O'Donnell Insurance Agency
Phone - 717-334-6741, x 29
Fax - 717-334-3414
Thank you for providing information to us. Please beware that no
coverage is bound and no change to your insurance program is confirmed
until verified by a licensed agent during regular business hours. If you
do not hear from us within 1 business day, please re-contact us in case
your information has not been retained.
-Original Message-
From: Gerry Surette [mailto:[EMAIL PROTECTED]
Sent: Friday, February 29, 2008 7:02 AM
To: tmic-list@eskimo.com
Subject: Re: [TMIC] reITP
Thanks Linda; you will find the correlation of Itp and tm on page4 of
the acticleTransverse myelitis: symtons, causes and diagnosis at at our
own sight www.myelitis.org/tm.htm. I was surprised as you fo find that
out. My neuro never mentioned it to me but sent me to an oncologist.
From: L T CHERPESKI [EMAIL PROTECTED]
To: tmic-list@eskimo.com,Gerry Surette [EMAIL PROTECTED]
Subject: Re: [TMIC] reITP
Date: Thu, 28 Feb 2008 22:06:41 -0700
Hi Gerry, thanks for letting us know that you will be in the hospital.
You will definitely be in my thoughts and prayers. I like your
attitude - one week of bliss, just being HIGH. That will be a nice
reprieve. It's interesting that this has come up. I have TM and my
granddaughter has ITP.
I've gone to medical seminars on ITP with my family so I do understand
about the disease. It's been a while since I've done any research and
I wasn't aware of the connection of TM and ITP - except that they are
both autoimmune diseases. I guess it's time for me to start
researching again.
I hope you have a relaxing weekend planned, then on Monday morning take
a deep breath, relax and just know that God will be right there with
you.
Hugs, Linda
- Original Message -
From: Gerry Surettemailto:[EMAIL PROTECTED]
To: tmic-list@eskimo.commailto:tmic-list@eskimo.com
Sent: Wednesday, February 27, 2008 9:45 AM
Subject: [TMIC] reITP
Hi everyone' As some of you know I will be entering the hospital
next
monday
morning for an intravenous gamaglobin including a bone maroow
transplant.
Thuis will last five days. To backrack my plelete count is very very
low. I
have ITP whereby my white blood cells are killing each other off.
The
risk
are not so high. Those of us who have TM have gone through much
worst.
the
news is this: It is related to TM ;;; I thought it was a new
complication to my life but doing some research I discovered that
ITP is
a
directed result to TM in some people. \\\The good part of all
this
is
that I will be so drugged up for four days that I will not feel the
pain
I
have been experiencing for the last 7 years. It is better then
cannibus.
God
RE: [TMIC] question
Hi Tracy it is I Gerry I have had tm since I was 21 had two relapses and
since 2001 have had it back with a vengence; now to answer your question.
just because your daughter{god blees her} has tm does not necessaryily mean
that she will get ms. The numerous articles I have read just SUGGEST that
the symptoms are similar THAT IS AL. There is no evidence I have
seen whereby tm leeds to ms. And having TM does not reduce your life span. I
have questioned my neuro on the subject and as all doctors do skimmed around
the subject.the best thing to do is consult your md. Since I joined this
group the subject of life span has come up. TM does not reduce life span so
I saith; so it is written soo it shall be
From: Tracey L. Black [EMAIL PROTECTED]
To: tmic-list@eskimo.com
Subject: RE: [TMIC] question
Date: Fri, 29 Feb 2008 09:24:13 -0500
Ok, now I have a question. In the link that Gerry provided us (Thanks
Gerry) I found the following:
It is also suggested in the medical literature that patients with
complete transverse myelitis (which means severe leg paralysis and
sensory loss) are less likely to develop MS than those who had a partial
or less severe case.
Has anyone on here experienced this? In case some of you don't remember,
my daughter who is now 14 was hit with TM when she was 11. She basically
had paralysis from her thighs down but also lost her bowel and bladder
function. Three years later (and a lot of hard work) she is walking with
forearm crutches and braces on her legs. I have always thought of her
case as a less severe case because she was not hit like a lot of others
with loss from her chest down or even full paralysis and according to
what I am reading it seems like she is more likely to get MS than those
that had a severe case of TM. When Ashlee first got TM (also combined
with GBS) I read about her condition and tried to get myself, my family,
and especially her prepared for the worst case scenario. We have been so
blessed that she is able to independently take care of herself, and
pretty has, since she started walking again. Now that I am reading up on
it again, I am really concerned.
Any insight would be greatly appreciated!
Tracey L. Black
Certified Insurance Service Representative
Hockley O'Donnell Insurance Agency
Phone - 717-334-6741, x 29
Fax - 717-334-3414
Thank you for providing information to us. Please beware that no
coverage is bound and no change to your insurance program is confirmed
until verified by a licensed agent during regular business hours. If you
do not hear from us within 1 business day, please re-contact us in case
your information has not been retained.
-Original Message-
From: Gerry Surette [mailto:[EMAIL PROTECTED]
Sent: Friday, February 29, 2008 7:02 AM
To: tmic-list@eskimo.com
Subject: Re: [TMIC] reITP
Thanks Linda; you will find the correlation of Itp and tm on page4 of
the acticleTransverse myelitis: symtons, causes and diagnosis at at our
own sight www.myelitis.org/tm.htm. I was surprised as you fo find that
out. My neuro never mentioned it to me but sent me to an oncologist.
From: L T CHERPESKI [EMAIL PROTECTED]
To: tmic-list@eskimo.com,Gerry Surette [EMAIL PROTECTED]
Subject: Re: [TMIC] reITP
Date: Thu, 28 Feb 2008 22:06:41 -0700
Hi Gerry, thanks for letting us know that you will be in the hospital.
You will definitely be in my thoughts and prayers. I like your
attitude - one week of bliss, just being HIGH. That will be a nice
reprieve. It's interesting that this has come up. I have TM and my
granddaughter has ITP.
I've gone to medical seminars on ITP with my family so I do understand
about the disease. It's been a while since I've done any research and
I wasn't aware of the connection of TM and ITP - except that they are
both autoimmune diseases. I guess it's time for me to start
researching again.
I hope you have a relaxing weekend planned, then on Monday morning take
a deep breath, relax and just know that God will be right there with
you.
Hugs, Linda
- Original Message -
From: Gerry Surettemailto:[EMAIL PROTECTED]
To: tmic-list@eskimo.commailto:tmic-list@eskimo.com
Sent: Wednesday, February 27, 2008 9:45 AM
Subject: [TMIC] reITP
Hi everyone' As some of you know I will be entering the hospital
next
monday
morning for an intravenous gamaglobin including a bone maroow
transplant.
Thuis will last five days. To backrack my plelete count is very very
low. I
have ITP whereby my white blood cells are killing each other off.
The
risk
are not so high. Those of us who have TM have gone through much
worst.
the
news is this: It is related to TM ;;; I thought it was a new
complication to my life but doing some research I discovered that
ITP is
a
directed result to TM in some people. \\\The good part of all
this
is
that I will be so drugged up for four days that I will not feel the
pain
I
have been experiencing for the last 7 years. It is better then
cannibus.
God
RE: [TMIC] wheelchair back-flipper
Alton all I can say is AWESOME This is why I joined the tm family. lately with all the bickering I wasn't sure this was for me. Let others share this and contribute: I especially need all th e encourgement I can get. I feel the video is just a part of it. It shows we should all strive to be productive no matter what our medical problems are. You made my day god bless you and thank youFrom: Alton Ryder [EMAIL PROTECTED] To: TMIC List tmic-list@eskimo.com Subject: [TMIC] wheelchair back-flipper Date: Thu, 28 Feb 2008 15:18:11 -0500 http://abcnews.go.com/Sports/story?id=4303338 and while you are there http://abcnews.go.com/US/wireStory?id=3174157 Alton, who remembers Jake LaGrange
[TMIC] reITP
Hi everyone' As some of you know I will be entering the hospital next monday morning for an intravenous gamaglobin including a bone maroow transplant. Thuis will last five days. To backrack my plelete count is very very low. I have ITP whereby my white blood cells are killing each other off. The risk are not so high. Those of us who have TM have gone through much worst. the news is this: It is related to TM ;;; I thought it was a new complication to my life but doing some research I discovered that ITP is a directed result to TM in some people. \\\The good part of all this is that I will be so drugged up for four days that I will not feel the pain I have been experiencing for the last 7 years. It is better then cannibus. God bless One week of total bliss. no pain. just HIGH please keep me in your thoughs and prayers. Again my church is praying for Jude.The lord is with us each and everyone of us. Just look around you. your wife; your girlfriend; He sent them to us to help; comfort and don't forget to nag us as well. lol gerry [EMAIL PROTECTED]
Re: [TMIC] my story
Thank you Frank for sharing your story; Obviously you are worse off than I am. God bless you; your tenacity with TM is an inspiration to me. please keep in touch gerry From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: Gerry Surette [EMAIL PROTECTED] Subject: Re: [TMIC] my story Date: Tue, 26 Feb 2008 09:52:17 -0500 Gerry, My name is Frank. I was afflicted with TM in 2000. I, too, have pain from my shoulders down, along with cramps and left side weakness. I also have the cold/ hot thing going on, especially on my left side. I was poorly treated for the first year, then found Dr. Douglass Kerr at Johns hopkins in baltimore. He changed my meds. Along the way I found the pain clinic at the Montreal General Hospital where Dr. Mark Ware is my pain doctor. He put me on Sativex- a cannabinoid spray, actually better than cannabis bought on the street, plus it's legal in Canada and the U.S.. I take it twice a day with excellent results. It lasts 8 hours! I also take Nortriptyline, Dextromethorphan, Phenobarbital and other meds for various secondary conditions. I live part time in Montreal with my girl-friend, and part-time in Freeport Maine. I just bought an Co-op apartment here in Montreal, across the street from my girl-friend's house. We plan to rent out here home and basement apartment, and live in my apartment. That way she'll have money coming in and less up-keep than her townhouse. I was 15 month's retired when struck with TM. Take care
[TMIC] RE: C'est moi
Hi Diane you can call me at 514 624 7203 anytime after I come out of the lakeshore hospital which should be March the tenth. take care neighbour. enjoy the 30 cm. of snow. let it snow let it snow spring is just around the corner From: Diane [EMAIL PROTECTED] To: Gerry Surette [EMAIL PROTECTED] Subject: C'est moi Date: Tue, 26 Feb 2008 14:23:13 -0500 OK have found you. So much for my geographic skills. Talk to you later neighbour. Diane - Original Message - From: Gerry Surette [EMAIL PROTECTED]O It is near pierrefonds; you have pierrefonds then Ste. genevieve then pierrefonds again
[TMIC] re snow
you are all a breathe of fresh air. Your words are not only enchanting but
encouraging. Here in Montreal we have received over three times the nomal
snowfall. a total of 350cm. so far and another 15 to 25 cm. storm coming
this week. I love the snow but when you have to go the store for the little
groceries I need with a walker it is no joy. At least you gave me the SPARK
to carry on .God Bless you. gerry PS Today and until future notice all
members of my church will keep Jude in our prayers and devotion. Gerry {new
boy}
