Re: [TMIC] hello out there
i have asked my Dr a couple of times why i have the symptoms with no lesions and he said it was because of the nerves damaged from the TM --- On Tue, 11/9/10, Dalton Garis malugss...@gmail.com wrote: From: Dalton Garis malugss...@gmail.com Subject: Re: [TMIC] hello out there To: L T CHERPESKI cherp...@msn.com, tmic-list@eskimo.com, Carol E snow121...@hotmail.com Date: Tuesday, November 9, 2010, 11:19 PM So, I have all the symptoms; But no lesions. OK, I’m stumped, except that the brainstem lesions are still there. Dalton From: L T CHERPESKI cherp...@msn.com Date: Tue, 9 Nov 2010 21:16:00 -0700 To: Dalton Garis malugss...@gmail.com, tmic-list@eskimo.com, Carol E snow121...@hotmail.com Subject: Re: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Tue, 9 Nov 2010 20:17:15 -0800 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 mailto:snow121...@hotmail.com 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 http://jan...@centurytel.net Date: Tue, 9 Nov 2010 19:28:29 -0600 To: Dalton Garis malugss...@gmail.com http://malugss...@gmail.com , Barbara Alma balmat...@aol.com http://balmat...@aol.com , tmic-list@eskimo.com http://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 http://tmic-list@eskimo.com Subject: Re: [TMIC] hello out there Actually; I had a day-long attack of spasms yesterday which left me unable to control either my hands and arms, legs, torso or speech. Every time I tried to talk I would cramp up. And Elvis was definitely being channeled in my body. Thank heavens I had the assistance of a very nice and strong maid who visits me once a week. It was her day to visit and she stayed with me and helped me to the bathroom and into and out of chairs. It was hard to sit down because I couldn’t make my body bend and I’d just slide off. But we got it under control. She had to help me drink and eat. I would grab the coffee cup handle and then could not make my hand let go. In the mean time I was so grateful for her assistance and that the Lord was taking care of me that I was also as high as a kite and proposing marriage to chairs and such. Today was the beginning of the work week here (Abu Dhabi) and I did alright. But the lecture kept going off on these tangents making it hard for my class to take useful notes. It was because my mental state was still flying around the cosmos. What is going on here? OK, I have TM in my upper spine; but what is this mental derangement stuff? I sure wish the drs could find out what is wrong with me. Dalton From: Barbara Alma balmat...@aol.com http://balmat...@aol.com Date: Sun, 7 Nov 2010 00:48:22 -0400 (EDT) To: tmic-list@eskimo.com http://tmic-list@eskimo.com
RE: [TMIC] hello out there
yeah my DR explained it like a road patch. you know,,if theres a hole in the pavement and the road crew puts a patch of asphalt in it instead of replacing the whole road, you can plainly see that there was a hole there because of the patch. he said thats what the myelin looks like in the affected areas after the proteen is replaced at the lesions. --- On Tue, 11/9/10, Carol E snow121...@hotmail.com wrote: From: Carol E snow121...@hotmail.com Subject: RE: [TMIC] hello out there To: malugss...@gmail.com, tmic-list@eskimo.com Date: Tuesday, November 9, 2010, 11:04 PM 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 Subject: Re: [TMIC] hello out there Actually; I had a day-long attack of spasms yesterday which left me unable to control either my hands and arms, legs, torso or speech. Every time I tried to talk I would cramp up. And Elvis was definitely being channeled in my body. Thank heavens I had the assistance of a very nice and strong maid who visits me once a week. It was her day to visit and she stayed with me and helped me to the bathroom and into and out of chairs. It was hard to sit down because I couldn’t make my body bend and I’d just slide off. But we got it under control. She had to help me drink and eat. I would grab the coffee cup handle and then could not make my hand let go. In the mean time I was so grateful for her assistance and that the Lord was taking care of me that I was also as high as a kite and proposing marriage to chairs and such. Today was the beginning of the work week here (Abu Dhabi) and I did alright. But the lecture kept going off on these tangents making it hard for my class to take useful notes. It was because my mental state was still flying around the cosmos. What is going on here? OK, I have TM in my upper spine; but what is this mental derangement stuff? I sure wish the drs could find out what is wrong with me. Dalton From: Barbara Alma balmat...@aol.com Date: Sun, 7 Nov 2010 00:48:22 -0400 (EDT) To: tmic-list@eskimo.com Subject: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 6 Nov 2010 21:48:30 -0700 Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
RE: [TMIC] hello out there
Carol E,
your sunday to present condition sounds almost exactly like mine.
heavy sigh.
--- On Wed, 11/10/10, Carol E snow121...@hotmail.com wrote:
From: Carol E snow121...@hotmail.com
Subject: RE: [TMIC] hello out there
To: malugss...@gmail.com, tmic-list@eskimo.com
Date: Wednesday, November 10, 2010, 11:06 AM
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
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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
Subject: Re: [TMIC] hello out there
Actually;
I had a day-long attack of spasms yesterday which left me unable to control
either my hands and arms, legs, torso or speech. Every time I tried to talk I
would cramp up. And Elvis was definitely being channeled in my body. Thank
heavens I had the assistance of a very nice and strong maid who visits me once
a week. It was her day to visit and she stayed with me and helped me to the
bathroom and into and out of chairs. It was hard to sit down because I
couldn’t make my body bend and I’d just slide off. But we got it under
control. She had to help me drink and eat. I would
Re: [TMIC] hello out there
I also have the problem for voiding. I have learned something that helps most of the time - bending over like touching you feet. This seems to put pressure on the bladder forcing voiding! 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: john snodgrass jcs...@yahoo.com To: transverse myelitis tmic-list@eskimo.com Sent: Wednesday, November 10, 2010 11:15:06 AM Subject: RE: [TMIC] hello out there Carol E, your sunday to present condition sounds almost exactly like mine. heavy sigh. --- On Wed, 11/10/10, Carol E snow121...@hotmail.com wrote: From: Carol E snow121...@hotmail.com Subject: RE: [TMIC] hello out there To: malugss...@gmail.com, tmic-list@eskimo.com Date: Wednesday, November 10, 2010, 11:06 AM 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. 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 Subject: Re: [TMIC] hello out there Actually; I had a day-long attack of spasms yesterday which left me unable to control either my hands and arms, legs
Re: [TMIC] hello out there
Okay, guys, I think that we are all getting a little different answers to our questions when talking to the doc's.I wonder if some of the answers aren't just spur of the moment replies, because they aren't sure and want to give an answer. Remember how rare TM is. Maybe Dr. Frank should get in on this. I would trust his answers. Janice From: john snodgrass Sent: Wednesday, November 10, 2010 4:02 AM To: transverse myelitis Subject: Re: [TMIC] hello out there i have asked my Dr a couple of times why i have the symptoms with no lesions and he said it was because of the nerves damaged from the TM --- On Tue, 11/9/10, Dalton Garis malugss...@gmail.com wrote: From: Dalton Garis malugss...@gmail.com Subject: Re: [TMIC] hello out there To: L T CHERPESKI cherp...@msn.com, tmic-list@eskimo.com, Carol E snow121...@hotmail.com Date: Tuesday, November 9, 2010, 11:19 PM So, I have all the symptoms; But no lesions. OK, I’m stumped, except that the brainstem lesions are still there. Dalton From: L T CHERPESKI cherp...@msn.com Date: Tue, 9 Nov 2010 21:16:00 -0700 To: Dalton Garis malugss...@gmail.com, tmic-list@eskimo.com, Carol E snow121...@hotmail.com Subject: Re: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Tue, 9 Nov 2010 20:17:15 -0800 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 mailto:snow121...@hotmail.com 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 http://jan...@centurytel.net Date: Tue, 9 Nov 2010 19:28:29 -0600 To: Dalton Garis malugss...@gmail.com http://malugss...@gmail.com , Barbara Alma balmat...@aol.com http://balmat...@aol.com , tmic-list@eskimo.com http://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 http://tmic-list@eskimo.com Subject: Re: [TMIC] hello out there Actually; I had a day-long attack of spasms yesterday which left me unable to control either my hands and arms, legs, torso or speech. Every time I tried to talk I would cramp up
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 Subject: Re: [TMIC] hello out there Actually; I had a day-long attack of spasms yesterday which left me unable to control either my hands and arms, legs, torso or speech. Every time I tried to talk I would cramp up. And Elvis was definitely being channeled in my body. Thank heavens I had the assistance of a very nice and strong maid who visits me once a week. It was her day to visit and she stayed with me and helped me to the bathroom and into and out of chairs. It was hard
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 Subject: Re: [TMIC] hello out there Actually; I had a day-long attack of spasms yesterday which left me unable to control either my hands and arms, legs, torso or speech. Every time I tried to talk I would cramp up. And Elvis was definitely being channeled in my body. Thank heavens I had the assistance of a very nice and strong maid who visits me once a week. It was her day to visit and she stayed with me and helped me to the bathroom and into and out of chairs. It was hard to sit down because I couldn’t make my body bend and I’d just slide off. But we got it under control. She had to help me drink and eat. I would grab the coffee cup handle and then could not make my hand let go. In the mean time I was so grateful for her assistance and that the Lord was taking care of me that I was also as high as a kite and proposing marriage to chairs and such. Today was the beginning of the work week here (Abu Dhabi) and I did alright. But the lecture kept going off on these tangents making it hard for my class to take useful notes. It was because my mental state was still flying around the cosmos. What is going on here? OK, I have TM in my upper spine; but what
Re: [TMIC] hello out there
Carol, how are you at staying dry during the nite? I have a real problem with that and always have to wear protection and sometimes that doesn't always work. Can't seem to feel enough yet to wake up in time. I can go 2-3 weeks and have a real wetting problem and then I can go for a couple of weeks and stay fairly dry. We can't seem to pin down the reason for this. I am beginning to think on the days that I don't take a nap (45min to hour) that I sleep too hard and don't feel the urge until it is too late.Time will tell. It is the pits! Janice From: john snodgrass Sent: Wednesday, November 10, 2010 10:15 AM To: transverse myelitis Subject: RE: [TMIC] hello out there Carol E, your sunday to present condition sounds almost exactly like mine. heavy sigh. --- On Wed, 11/10/10, Carol E snow121...@hotmail.com wrote: From: Carol E snow121...@hotmail.com Subject: RE: [TMIC] hello out there To: malugss...@gmail.com, tmic-list@eskimo.com Date: Wednesday, November 10, 2010, 11:06 AM 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
Re: [TMIC] hello out there
You are right, that helps.Also, blowing your nose does too! I void completely when I go, but apparently make a lot of urine late at nite. Janice From: CANDIS KALLEY Sent: Wednesday, November 10, 2010 10:28 AM To: tmic-list Subject: Re: [TMIC] hello out there I also have the problem for voiding. I have learned something that helps most of the time - bending over like touching you feet. This seems to put pressure on the bladder forcing voiding! 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: john snodgrass jcs...@yahoo.com To: transverse myelitis tmic-list@eskimo.com Sent: Wednesday, November 10, 2010 11:15:06 AM Subject: RE: [TMIC] hello out there Carol E, your sunday to present condition sounds almost exactly like mine. heavy sigh. --- On Wed, 11/10/10, Carol E snow121...@hotmail.com wrote: From: Carol E snow121...@hotmail.com Subject: RE: [TMIC] hello out there To: malugss...@gmail.com, tmic-list@eskimo.com Date: Wednesday, November 10, 2010, 11:06 AM 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
RE: [TMIC] hello out there
I also have a big problem staying dry during the night. Even though I do wake at least once during the night, and sometimes twice to go potty. I am on oxybutynin and it works pretty well during the day, but night is another story. I thought it was just me, but I guess it is a problem with TM. I don’t nap during the day, but always seem to doze off after supper while watching TV for maybe a half an hour or so. I wear heavy duty overnite pads that seem to work most of the time. I agree that it is the PITS!!! Patti - Wisconsin From: Janice Nichols [mailto:jan...@centurytel.net] Sent: Wednesday, November 10, 2010 10:43 AM To: john snodgrass; transverse myelitis Subject: Re: [TMIC] hello out there Carol, how are you at staying dry during the nite? I have a real problem with that and always have to wear protection and sometimes that doesn't always work. Can't seem to feel enough yet to wake up in time. I can go 2-3 weeks and have a real wetting problem and then I can go for a couple of weeks and stay fairly dry. We can't seem to pin down the reason for this. I am beginning to think on the days that I don't take a nap (45min to hour) that I sleep too hard and don't feel the urge until it is too late.Time will tell. It is the pits! Janice From: john snodgrass mailto:jcs...@yahoo.com Sent: Wednesday, November 10, 2010 10:15 AM To: transverse myelitis mailto:tmic-list@eskimo.com Subject: RE: [TMIC] hello out there Carol E, your sunday to present condition sounds almost exactly like mine. heavy sigh. --- On Wed, 11/10/10, Carol E snow121...@hotmail.com wrote: From: Carol E snow121...@hotmail.com Subject: RE: [TMIC] hello out there To: malugss...@gmail.com, tmic-list@eskimo.com Date: Wednesday, November 10, 2010, 11:06 AM 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
RE: [TMIC] hello out there
With the exception of my face, I don't have any problems staying dry at night. I very seldom get up during the night to go to the bathroom...maybe once a month I have to get up. When I get up in the morning, I don't usually have the urge and can't go even if I try. Then after 2 cups of coffee, my mind decides it's time. Sometimes it's a quick process and other times it takes forever, even though I feel like I am bursting. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. From: jan...@centurytel.net To: jcs...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] hello out there Date: Wed, 10 Nov 2010 10:42:55 -0600 Carol, how are you at staying dry during the nite? I have a real problem with that and always have to wear protection and sometimes that doesn't always work. Can't seem to feel enough yet to wake up in time. I can go 2-3 weeks and have a real wetting problem and then I can go for a couple of weeks and stay fairly dry. We can't seem to pin down the reason for this. I am beginning to think on the days that I don't take a nap (45min to hour) that I sleep too hard and don't feel the urge until it is too late.Time will tell. It is the pits! Janice From: john snodgrass Sent: Wednesday, November 10, 2010 10:15 AM To: transverse myelitis Subject: RE: [TMIC] hello out there Carol E, your sunday to present condition sounds almost exactly like mine. heavy sigh. --- On Wed, 11/10/10, Carol E snow121...@hotmail.com wrote: From: Carol E snow121...@hotmail.com Subject: RE: [TMIC] hello out there To: malugss...@gmail.com, tmic-list@eskimo.com Date: Wednesday, November 10, 2010, 11:06 AM 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
Re: [TMIC] hello out there
This is a really nasty part of TM. Hate it! Janice From: Carol E Sent: Wednesday, November 10, 2010 11:45 AM To: jan...@centurytel.net ; tmic-list@eskimo.com Subject: RE: [TMIC] hello out there With the exception of my face, I don't have any problems staying dry at night. I very seldom get up during the night to go to the bathroom...maybe once a month I have to get up. When I get up in the morning, I don't usually have the urge and can't go even if I try. Then after 2 cups of coffee, my mind decides it's time. Sometimes it's a quick process and other times it takes forever, even though I feel like I am bursting. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. From: jan...@centurytel.net To: jcs...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] hello out there Date: Wed, 10 Nov 2010 10:42:55 -0600 Carol, how are you at staying dry during the nite? I have a real problem with that and always have to wear protection and sometimes that doesn't always work. Can't seem to feel enough yet to wake up in time. I can go 2-3 weeks and have a real wetting problem and then I can go for a couple of weeks and stay fairly dry. We can't seem to pin down the reason for this. I am beginning to think on the days that I don't take a nap (45min to hour) that I sleep too hard and don't feel the urge until it is too late.Time will tell. It is the pits! Janice From: john snodgrass Sent: Wednesday, November 10, 2010 10:15 AM To: transverse myelitis Subject: RE: [TMIC] hello out there Carol E, your sunday to present condition sounds almost exactly like mine. heavy sigh. --- On Wed, 11/10/10, Carol E snow121...@hotmail.com wrote: From: Carol E snow121...@hotmail.com Subject: RE: [TMIC] hello out there To: malugss...@gmail.com, tmic-list@eskimo.com Date: Wednesday, November 10, 2010, 11:06 AM 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
RE: [TMIC] hello out there
another strange thing i have experienced is i would feel something wet like on
my leg or somewhere and think ,,what the heck,,then i would do what comes
naturally,put my hand there, and it would be dry where it felt wet.
even felt sweat going down my side when nothing would be there.
good ole nerves.
gotta love em.
--- On Wed, 11/10/10, Carol E snow121...@hotmail.com wrote:
From: Carol E snow121...@hotmail.com
Subject: RE: [TMIC] hello out there
To: jan...@centurytel.net, tmic-list@eskimo.com
Date: Wednesday, November 10, 2010, 12:45 PM
With the exception of my face, I don't have any problems staying dry at night.
I very seldom get up during the night to go to the bathroom...maybe once a
month I have to get up. When I get up in the morning, I don't usually have the
urge and can't go even if I try. Then after 2 cups of coffee, my mind decides
it's time. Sometimes it's a quick process and other times it takes forever,
even though I feel like I am bursting.
Carol
Worrying does not empty
tomorrow of its troubles;
It empties today of its strengths.
From: jan...@centurytel.net
To: jcs...@yahoo.com; tmic-list@eskimo.com
Subject: Re: [TMIC] hello out there
Date: Wed, 10 Nov 2010 10:42:55 -0600
Carol, how are you at staying dry during the nite? I have a real problem
with that and always have to wear protection and sometimes that doesn't always
work. Can't
seem to feel enough yet to wake up in time. I can go 2-3 weeks and have a
real wetting problem and then I can go for a couple of weeks and stay fairly
dry. We can't
seem to pin down the reason for this. I am beginning to think on the days
that I don't take a nap (45min to hour) that I sleep too hard and don't feel
the urge until it
is too late. Time will tell. It is the pits!
Janice
From: john snodgrass
Sent: Wednesday, November 10, 2010 10:15 AM
To: transverse myelitis
Subject: RE: [TMIC] hello out there
Carol E,
your sunday to present condition sounds almost exactly like mine.
heavy sigh.
--- On Wed, 11/10/10, Carol E snow121...@hotmail.com wrote:
From: Carol E snow121...@hotmail.com
Subject: RE: [TMIC] hello out there
To: malugss...@gmail.com, tmic-list@eskimo.com
Date: Wednesday, November 10, 2010, 11:06 AM
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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
#yiv989670764 .yiv989670764ExternalClass #yiv989670764ecxyiv629318572
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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
Re: [TMIC] hello out there
That happens to me also.Janice From: john snodgrass Sent: Wednesday, November 10, 2010 12:17 PM To: transverse myelitis Subject: RE: [TMIC] hello out there another strange thing i have experienced is i would feel something wet like on my leg or somewhere and think ,,what the heck,,then i would do what comes naturally,put my hand there, and it would be dry where it felt wet. even felt sweat going down my side when nothing would be there. good ole nerves. gotta love em. --- On Wed, 11/10/10, Carol E snow121...@hotmail.com wrote: From: Carol E snow121...@hotmail.com Subject: RE: [TMIC] hello out there To: jan...@centurytel.net, tmic-list@eskimo.com Date: Wednesday, November 10, 2010, 12:45 PM With the exception of my face, I don't have any problems staying dry at night. I very seldom get up during the night to go to the bathroom...maybe once a month I have to get up. When I get up in the morning, I don't usually have the urge and can't go even if I try. Then after 2 cups of coffee, my mind decides it's time. Sometimes it's a quick process and other times it takes forever, even though I feel like I am bursting. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. From: jan...@centurytel.net To: jcs...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] hello out there Date: Wed, 10 Nov 2010 10:42:55 -0600 Carol, how are you at staying dry during the nite? I have a real problem with that and always have to wear protection and sometimes that doesn't always work. Can't seem to feel enough yet to wake up in time. I can go 2-3 weeks and have a real wetting problem and then I can go for a couple of weeks and stay fairly dry. We can't seem to pin down the reason for this. I am beginning to think on the days that I don't take a nap (45min to hour) that I sleep too hard and don't feel the urge until it is too late.Time will tell. It is the pits! Janice From: john snodgrass Sent: Wednesday, November 10, 2010 10:15 AM To: transverse myelitis Subject: RE: [TMIC] hello out there Carol E, your sunday to present condition sounds almost exactly like mine. heavy sigh. --- On Wed, 11/10/10, Carol E snow121...@hotmail.com wrote: From: Carol E snow121...@hotmail.com Subject: RE: [TMIC] hello out there To: malugss...@gmail.com, tmic-list@eskimo.com Date: Wednesday, November 10, 2010, 11:06 AM 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
Re: [TMIC] hello out there
Good idea. Janice From: Barbara Alma Sent: Saturday, November 06, 2010 10:48 PM To: tmic-list@eskimo.com Subject: [TMIC] hello out there Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
Re: [TMIC] hello out there
John Have you retired yet? If so, can you tell a difference in how you feel? Janice From: john snodgrass Sent: Sunday, November 07, 2010 3:59 AM To: transverse myelitis Subject: Re: [TMIC] hello out there I would say the pain is not as intense as it has been but am afraid i will jinx myself! --- On Sun, 11/7/10, Barbara Alma balmat...@aol.com wrote: From: Barbara Alma balmat...@aol.com Subject: [TMIC] hello out there To: tmic-list@eskimo.com Date: Sunday, November 7, 2010, 12:48 AM Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
Re: [TMIC] hello out there
Re: [TMIC] hello out thereI 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 Sent: Sunday, November 07, 2010 10:23 AM To: Barbara Alma ; tmic-list@eskimo.com Subject: Re: [TMIC] hello out there Actually; I had a day-long attack of spasms yesterday which left me unable to control either my hands and arms, legs, torso or speech. Every time I tried to talk I would cramp up. And Elvis was definitely being channeled in my body. Thank heavens I had the assistance of a very nice and strong maid who visits me once a week. It was her day to visit and she stayed with me and helped me to the bathroom and into and out of chairs. It was hard to sit down because I couldn't make my body bend and I'd just slide off. But we got it under control. She had to help me drink and eat. I would grab the coffee cup handle and then could not make my hand let go. In the mean time I was so grateful for her assistance and that the Lord was taking care of me that I was also as high as a kite and proposing marriage to chairs and such. Today was the beginning of the work week here (Abu Dhabi) and I did alright. But the lecture kept going off on these tangents making it hard for my class to take useful notes. It was because my mental state was still flying around the cosmos. What is going on here? OK, I have TM in my upper spine; but what is this mental derangement stuff? I sure wish the drs could find out what is wrong with me. Dalton From: Barbara Alma balmat...@aol.com Date: Sun, 7 Nov 2010 00:48:22 -0400 (EDT) To: tmic-list@eskimo.com Subject: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 6 Nov 2010 21:48:30 -0700 Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
Re: [TMIC] hello out there
No, I haven't noticed that, but I have noticed strange bruising with no pain. I prefer my situation to yours. Janice From: CANDIS KALLEY Sent: Sunday, November 07, 2010 10:55 AM To: tmic-list Subject: Re: [TMIC] hello out there Dalton, So sorry that you had another bad day. With the onset of cold wether, I've been having a bad time myself. Somehow, I got a briuse on my big toe but the pain wasn't/isn't in my toe. I could hardly move for 2 days ago. I wore protection and would just sit wet myself because it hurt so bad to move IF I could move - my R leg would give out on me. My back felt as if someone was inside trying to tear everything from the inside out! If I didn't move, I had the normal back pain. I fell one other time and my L foot was bruised. For the next 5 days if I put any weight on theL foot, I would fall and the pain was horriable! Has anyone experienced pain, or the results of pain, but not in the area of the injury? 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: Dalton Garis malugss...@gmail.com To: Barbara Alma balmat...@aol.com, tmic-list@eskimo.com Sent: Sunday, November 7, 2010 11:23:44 AM Subject: Re: [TMIC] hello out there Actually; I had a day-long attack of spasms yesterday which left me unable to control either my hands and arms, legs, torso or speech. Every time I tried to talk I would cramp up. And Elvis was definitely being channeled in my body. Thank heavens I had the assistance of a very nice and strong maid who visits me once a week. It was her day to visit and she stayed with me and helped me to the bathroom and into and out of chairs. It was hard to sit down because I couldn’t make my body bend and I’d just slide off. But we got it under control. She had to help me drink and eat. I would grab the coffee cup handle and then could not make my hand let go. In the mean time I was so grateful for her assistance and that the Lord was taking care of me that I was also as high as a kite and proposing marriage to chairs and such. Today was the beginning of the work week here (Abu Dhabi) and I did alright. But the lecture kept going off on these tangents making it hard for my class to take useful notes. It was because my mental state was still flying around the cosmos. What is going on here? OK, I have TM in my upper spine; but what is this mental derangement stuff? I sure wish the drs could find out what is wrong with me. Dalton From: Barbara Alma balmat...@aol.com Date: Sun, 7 Nov 2010 00:48:22 -0400 (EDT) To: tmic-list@eskimo.com Subject: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 6 Nov 2010 21:48:30 -0700 Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA Emoticon10.gif
Re: [TMIC] hello out there
Re: [TMIC] hello out thereDalton, maybe you should start bugging your doctors again and see what else they could come up with. How can you have TM with no demyelination? Janice From: Dalton Garis Sent: Sunday, November 07, 2010 10:56 AM To: Laura Beaudin Cc: Barbara Alma ; tmic-list@eskimo.com Subject: Re: [TMIC] hello out there Well; I was MRI-d this summer and they found no evidence of demyelination (but couldn't rule out inflammation, of course). I have also been tested for epilepsy and they didn't find any, but found pseudo-epilepsy-whatever that is. They did find brainstem anomalies in the MRI and the brainstem is the switching authority for the brain-body coordination. Then everyone lost interest. And that is as far as it has gone. I have a dr who keeps me in Lyrica prescriptions; but has no further interest in the case. Dalton From: Laura Beaudin laura.beau...@gmail.com Date: Sun, 7 Nov 2010 09:47:05 -0700 To: Dalton Garis malugss...@gmail.com Cc: Barbara Alma balmat...@aol.com, tmic-list@eskimo.com Subject: Re: [TMIC] hello out there Dalton, Have you been properly screened for MS? Laura www.laurabeaudin.com http://www.laurabeaudin.com --NOT just another blog! http://practical-homeschooling.org On Sun, Nov 7, 2010 at 9:23 AM, Dalton Garis malugss...@gmail.com wrote: Actually; I had a day-long attack of spasms yesterday which left me unable to control either my hands and arms, legs, torso or speech. Every time I tried to talk I would cramp up. And Elvis was definitely being channeled in my body. Thank heavens I had the assistance of a very nice and strong maid who visits me once a week. It was her day to visit and she stayed with me and helped me to the bathroom and into and out of chairs. It was hard to sit down because I couldn't make my body bend and I'd just slide off. But we got it under control. She had to help me drink and eat. I would grab the coffee cup handle and then could not make my hand let go. In the mean time I was so grateful for her assistance and that the Lord was taking care of me that I was also as high as a kite and proposing marriage to chairs and such. Today was the beginning of the work week here (Abu Dhabi) and I did alright. But the lecture kept going off on these tangents making it hard for my class to take useful notes. It was because my mental state was still flying around the cosmos. What is going on here? OK, I have TM in my upper spine; but what is this mental derangement stuff? I sure wish the drs could find out what is wrong with me. Dalton -- From: Barbara Alma balmat...@aol.com http://balmat...@aol.com Date: Sun, 7 Nov 2010 00:48:22 -0400 (EDT) To: tmic-list@eskimo.com http://tmic-list@eskimo.com Subject: [TMIC] hello out there Resent-From: tmic-list@eskimo.com http://tmic-list@eskimo.com Resent-Date: Sat, 6 Nov 2010 21:48:30 -0700 Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
Re: [TMIC] hello out there
We live and learn!Put those 6-month infusions on the calendar.Hope you are comfortable now. Janice From: L T CHERPESKI Sent: Sunday, November 07, 2010 5:33 PM To: tmic-list@eskimo.com ; Barbara Alma Subject: Re: [TMIC] hello out there Have been trying to keep myself calm and quiet as I am in a full blown flare. I'm 2 months past my Rituxan infusions, which obviously is not good. Hoping they were approved last Friday and will be scheduled this week. I have Recurring TM and Rituxan has kept me attack free the last 2 years - I guess that teaches me a lesson - the hard way. Get infusions every 6 months on schedule. A real bummer~ Linda in Eagle, ID - Original Message - From: Barbara Alma To: tmic-list@eskimo.com Sent: Saturday, November 06, 2010 9:48 PM Subject: [TMIC] hello out there Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
Re: [TMIC] hello out there
Re: [TMIC] hello out thereI agree with you Linda.He needs help. Janice From: L T CHERPESKI Sent: Sunday, November 07, 2010 6:43 PM To: tmic-list@eskimo.com ; Barbara Alma ; Dalton Garis Subject: Re: [TMIC] hello out there Hi Dalton Everyone ~~ You're right Dalton. Many of us seem to be having additional challenges right now. Could be why we've been so quiet on the list After I read your post about the horrific day you had, I did a little research, and I think I came back even more confused - sorry to say. I'm sure I've asked you this before, but I'll ask again. Have you been given any drugs specifically for seizures? If not, could your doctor put you on a seizure med for a trial period to see if it would indeed help?? I don't understand why they haven't tried this. How does anybody know if nothing has been tried??? Is Lyrica the only medication you take? Is there another neuro you could see or would your neuro consider consulting another neuro about your case? So many questions - so few answers. I don't know what to say. It's so frustrating to see you going through all of this. Hang in there and keep posting. Linda - Original Message - From: Dalton Garis To: L T CHERPESKI ; tmic-list@eskimo.com ; Barbara Alma Sent: Sunday, November 07, 2010 5:19 PM Subject: Re: [TMIC] hello out there Seems as if everyone went down at the same time. Is it possible that I might have recurrent TM? I wish I could get the neuro interested in my case. But he just keeps me in Lyrica and has no further interest. Dalton -- From: L T CHERPESKI cherp...@msn.com Date: Sun, 7 Nov 2010 16:33:40 -0700 To: tmic-list@eskimo.com, Barbara Alma balmat...@aol.com Subject: Re: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Sun, 7 Nov 2010 15:33:39 -0800 Have been trying to keep myself calm and quiet as I am in a full blown flare. I'm 2 months past my Rituxan infusions, which obviously is not good. Hoping they were approved last Friday and will be scheduled this week. I have Recurring TM and Rituxan has kept me attack free the last 2 years - I guess that teaches me a lesson - the hard way. Get infusions every 6 months on schedule. A real bummer~ Linda in Eagle, ID - Original Message - From: Barbara Alma mailto:balmat...@aol.com To: tmic-list@eskimo.com Sent: Saturday, November 06, 2010 9:48 PM Subject: [TMIC] hello out there Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
Re: [TMIC] hello out there
Actually, I love the winter weather.At least then I don't have many hot spells. I can control that better in cold weather. Anyone else like that? Janice From: Barbara Alma Sent: Sunday, November 07, 2010 7:44 PM To: cherp...@msn.com ; tmic-list@eskimo.com ; malugss...@gmail.com Subject: Re: [TMIC] hello out there Hello all, Well, maybe I shouldn't have asked this question, but I'm glad I did. It looks like some support was needed for you guys and maybe for some just lurking and not feeling up to writing in. Believe me, I sympathize with you and your pain. This time of year, when it's cold in many parts of the country and world, my symptoms get worse also. It seems that some of us have symptoms that are exacerbated by the cold and some by heat. The barometric pressure can affect many. Mine are much worse in the cold, and especially if it's rainy. My skin can be warm to the touch, but I can feel cold to the bone (as I say). I actually think that it may be the nerves that are cold and it is so hard to warm up again. It can be really painful. I get under the blankets and also wrap my legs in blankets, sometimes a heated one, and pray it goes away soon, but I can only do that when I'm at home. I try not to go out of the house unless absolutely necessary during this time of year, and I am sure that this is why the winter blues set in. This is something we have to be very careful of, because it can cause a lot of depression. Please be aware of this. This is another reason why it's important to keep in touch. Hugs, Barbara A in Auburn CA -Original Message- From: L T CHERPESKI cherp...@msn.com To: tmic-list tmic-list@eskimo.com; Barbara Alma balmat...@aol.com; Dalton Garis malugss...@gmail.com Sent: Sun, Nov 7, 2010 4:43 pm Subject: Re: [TMIC] hello out there Hi Dalton Everyone ~~ You're right Dalton. Many of us seem to be having additional challenges right now. Could be why we've been so quiet on the list After I read your post about the horrific day you had, I did a little research, and I think I came back even more confused - sorry to say. I'm sure I've asked you this before, but I'll ask again. Have you been given any drugs specifically for seizures? If not, could your doctor put you on a seizure med for a trial period to see if it would indeed help?? I don't understand why they haven't tried this. How does anybody know if nothing has been tried??? Is Lyrica the only medication you take? Is there another neuro you could see or would your neuro consider consulting another neuro about your case? So many questions - so few answers. I don't know what to say. It's so frustrating to see you going through all of this. Hang in there and keep posting. Linda - Original Message - From: Dalton Garis To: L T CHERPESKI ; tmic-list@eskimo.com ; Barbara Alma Sent: Sunday, November 07, 2010 5:19 PM Subject: Re: [TMIC] hello out there Seems as if everyone went down at the same time. Is it possible that I might have recurrent TM? I wish I could get the neuro interested in my case. But he just keeps me in Lyrica and has no further interest. Dalton -- From: L T CHERPESKI cherp...@msn.com Date: Sun, 7 Nov 2010 16:33:40 -0700 To: tmic-list@eskimo.com, Barbara Alma balmat...@aol.com Subject: Re: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Sun, 7 Nov 2010 15:33:39 -0800 Have been trying to keep myself calm and quiet as I am in a full blown flare. I'm 2 months past my Rituxan infusions, which obviously is not good. Hoping they were approved last Friday and will be scheduled this week. I have Recurring TM and Rituxan has kept me attack free the last 2 years - I guess that teaches me a lesson - the hard way. Get infusions every 6 months on schedule. A real bummer~ Linda in Eagle, ID
Re: [TMIC] hello out there
from what I understand,TM is when you actually have the inflamatin of the myelin. so we dont actually have TM now but suffering from the damage that TM has done. it is just easier to say when talking to someone when they ask whats wrong,i have TM. some suffer reoccurance but it is not likely. my last MRI showed that the myelin that had demyelinated had healed. no swelling,no missing myelin. like insulation around a damaged wires. I asked a Dr why I jerked sometimes and sometimes rather violently and she said all the activity with the brain attempting to send signals that was mistranslated,so much energy was built up like static and it would release in the jerk. i reckon that means i am a jerk? I have read other definitions but that sounded more apealing and easy to explaine to those that might feel uneasy about my jerking. just tell em it's the Elvis complex. --- On Tue, 11/9/10, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: [TMIC] hello out there To: Dalton Garis malugss...@gmail.com, Laura Beaudin laura.beau...@gmail.com Cc: Barbara Alma balmat...@aol.com, tmic-list@eskimo.com Date: Tuesday, November 9, 2010, 8:34 PM Dalton, maybe you should start bugging your doctors again and see what else they could come up with. How can you have TM with no demyelination? Janice From: Dalton Garis Sent: Sunday, November 07, 2010 10:56 AM To: Laura Beaudin Cc: Barbara Alma ; tmic-list@eskimo.com Subject: Re: [TMIC] hello out there Well; I was MRI-d this summer and they found no evidence of demyelination (but couldn’t rule out inflammation, of course). I have also been tested for epilepsy and they didn’t find any, but found pseudo-epilepsy—whatever that is. They did find “brainstem anomalies” in the MRI and the brainstem is the switching authority for the brain-body coordination. Then everyone lost interest. And that is as far as it has gone. I have a dr who keeps me in Lyrica prescriptions; but has no further interest in the case. Dalton From: Laura Beaudin laura.beau...@gmail.com Date: Sun, 7 Nov 2010 09:47:05 -0700 To: Dalton Garis malugss...@gmail.com Cc: Barbara Alma balmat...@aol.com, tmic-list@eskimo.com Subject: Re: [TMIC] hello out there Dalton, Have you been properly screened for MS? Laura www.laurabeaudin.com http://www.laurabeaudin.com --NOT just another blog! http://practical-homeschooling.org On Sun, Nov 7, 2010 at 9:23 AM, Dalton Garis malugss...@gmail.com wrote: Actually; I had a day-long attack of spasms yesterday which left me unable to control either my hands and arms, legs, torso or speech. Every time I tried to talk I would cramp up. And Elvis was definitely being channeled in my body. Thank heavens I had the assistance of a very nice and strong maid who visits me once a week. It was her day to visit and she stayed with me and helped me to the bathroom and into and out of chairs. It was hard to sit down because I couldn’t make my body bend and I’d just slide off. But we got it under control. She had to help me drink and eat. I would grab the coffee cup handle and then could not make my hand let go. In the mean time I was so grateful for her assistance and that the Lord was taking care of me that I was also as high as a kite and proposing marriage to chairs and such. Today was the beginning of the work week here (Abu Dhabi) and I did alright. But the lecture kept going off on these tangents making it hard for my class to take useful notes. It was because my mental state was still flying around the cosmos. What is going on here? OK, I have TM in my upper spine; but what is this mental derangement stuff? I sure wish the drs could find out what is wrong with me. Dalton From: Barbara Alma balmat...@aol.com http://balmat...@aol.com Date: Sun, 7 Nov 2010 00:48:22 -0400 (EDT) To: tmic-list@eskimo.com http://tmic-list@eskimo.com Subject: [TMIC] hello out there Resent-From: tmic-list@eskimo.com http://tmic-list@eskimo.com Resent-Date: Sat, 6 Nov 2010 21:48:30 -0700 Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
Re: [TMIC] hello out there
that has got to b a woman thing I thank God everyday that I am not a woman! ;) --- On Tue, 11/9/10, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: [TMIC] hello out there To: cherp...@msn.com, tmic-list@eskimo.com, malugss...@gmail.com, Barbara Alma balmat...@aol.com Date: Tuesday, November 9, 2010, 8:43 PM Actually, I love the winter weather. At least then I don't have many hot spells. I can control that better in cold weather. Anyone else like that? Janice From: Barbara Alma Sent: Sunday, November 07, 2010 7:44 PM To: cherp...@msn.com ; tmic-list@eskimo.com ; malugss...@gmail.com Subject: Re: [TMIC] hello out there Hello all, Well, maybe I shouldn't have asked this question, but I'm glad I did. It looks like some support was needed for you guys and maybe for some just lurking and not feeling up to writing in. Believe me, I sympathize with you and your pain. This time of year, when it's cold in many parts of the country and world, my symptoms get worse also. It seems that some of us have symptoms that are exacerbated by the cold and some by heat. The barometric pressure can affect many. Mine are much worse in the cold, and especially if it's rainy. My skin can be warm to the touch, but I can feel cold to the bone (as I say). I actually think that it may be the nerves that are cold and it is so hard to warm up again. It can be really painful. I get under the blankets and also wrap my legs in blankets, sometimes a heated one, and pray it goes away soon, but I can only do that when I'm at home. I try not to go out of the house unless absolutely necessary during this time of year, and I am sure that this is why the winter blues set in. This is something we have to be very careful of, because it can cause a lot of depression. Please be aware of this. This is another reason why it's important to keep in touch. Hugs, Barbara A in Auburn CA -Original Message- From: L T CHERPESKI cherp...@msn.com To: tmic-list tmic-list@eskimo.com; Barbara Alma balmat...@aol.com; Dalton Garis malugss...@gmail.com Sent: Sun, Nov 7, 2010 4:43 pm Subject: Re: [TMIC] hello out there Hi Dalton Everyone ~~ You're right Dalton. Many of us seem to be having additional challenges right now. Could be why we've been so quiet on the list After I read your post about the horrific day you had, I did a little research, and I think I came back even more confused - sorry to say. I'm sure I've asked you this before, but I'll ask again. Have you been given any drugs specifically for seizures? If not, could your doctor put you on a seizure med for a trial period to see if it would indeed help?? I don't understand why they haven't tried this. How does anybody know if nothing has been tried??? Is Lyrica the only medication you take? Is there another neuro you could see or would your neuro consider consulting another neuro about your case? So many questions - so few answers. I don't know what to say. It's so frustrating to see you going through all of this. Hang in there and keep posting. Linda - Original Message - From: Dalton Garis To: L T CHERPESKI ; tmic-list@eskimo.com ; Barbara Alma Sent: Sunday, November 07, 2010 5:19 PM Subject: Re: [TMIC] hello out there Seems as if everyone went down at the same time. Is it possible that I might have recurrent TM? I wish I could get the neuro interested in my case. But he just keeps me in Lyrica and has no further interest. Dalton From: L T CHERPESKI cherp...@msn.com Date: Sun, 7 Nov 2010 16:33:40 -0700 To: tmic-list@eskimo.com, Barbara Alma balmat...@aol.com Subject: Re: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Sun, 7 Nov 2010 15:33:39 -0800 Have been trying to keep myself calm and quiet as I am in a full blown flare. I'm 2 months past my Rituxan infusions, which obviously is not good. Hoping they were approved last Friday and will be scheduled this week. I have Recurring TM and Rituxan has kept me attack free the last 2 years - I guess that teaches me a lesson - the hard way. Get infusions every 6 months on schedule. A real bummer~ Linda in Eagle, ID
Re: [TMIC] hello out there
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 Subject: Re: [TMIC] hello out there Actually; I had a day-long attack of spasms yesterday which left me unable to control either my hands and arms, legs, torso or speech. Every time I tried to talk I would cramp up. And Elvis was definitely being channeled in my body. Thank heavens I had the assistance of a very nice and strong maid who visits me once a week. It was her day to visit and she stayed with me and helped me to the bathroom and into and out of chairs. It was hard to sit down because I couldn¹t make my body bend and I¹d just slide off. But we got it under control. She had to help me drink and eat. I would grab the coffee cup handle and then could not make my hand let go. In the mean time I was so grateful for her assistance and that the Lord was taking care of me that I was also as high as a kite and proposing marriage to chairs and such. Today was the beginning of the work week here (Abu Dhabi) and I did alright. But the lecture kept going off on these tangents making it hard for my class to take useful notes. It was because my mental state was still flying around the cosmos. What is going on here? OK, I have TM in my upper spine; but what is this mental derangement stuff? I sure wish the drs could find out what is wrong with me. Dalton From: Barbara Alma balmat...@aol.com Date: Sun, 7 Nov 2010 00:48:22 -0400 (EDT) To: tmic-list@eskimo.com Subject: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 6 Nov 2010 21:48:30 -0700 Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
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 Subject: Re: [TMIC] hello out there Actually; I had a day-long attack of spasms yesterday which left me unable to control either my hands and arms, legs, torso or speech. Every time I tried to talk I would cramp up. And Elvis was definitely being channeled in my body. Thank heavens I had the assistance of a very nice and strong maid who visits me once a week. It was her day to visit and she stayed with me and helped me to the bathroom and into and out of chairs. It was hard to sit down because I couldn’t make my body bend and I’d just slide off. But we got it under control. She had to help me drink and eat. I would grab the coffee cup handle and then could not make my hand let go. In the mean time I was so grateful for her assistance and that the Lord was taking care of me that I was also as high as a kite and proposing marriage to chairs and such. Today was the beginning of the work week here (Abu Dhabi) and I did alright. But the lecture kept going off on these tangents making it hard for my class to take useful notes. It was because my mental state was still flying around the cosmos. What is going on here? OK, I have TM in my upper spine; but what is this mental derangement stuff? I sure wish the drs could find out what is wrong with me. Dalton From: Barbara Alma balmat...@aol.com Date: Sun, 7 Nov 2010 00:48:22 -0400 (EDT) To: tmic-list@eskimo.com Subject: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 6 Nov 2010 21:48:30 -0700 Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
Re: [TMIC] hello out there
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 Subject: Re: [TMIC] hello out there Actually; I had a day-long attack of spasms yesterday which left me unable to control either my hands and arms, legs, torso or speech. Every time I tried to talk I would cramp up. And Elvis was definitely being channeled in my body. Thank heavens I had the assistance of a very nice and strong maid who visits me once a week. It was her day to visit and she stayed with me and helped me to the bathroom and into and out of chairs. It was hard to sit down because I couldn’t make my body bend and I’d just slide off. But we got it under control. She had to help me drink and eat. I would grab the coffee cup handle and then could not make my hand let go. In the mean time I was so grateful for her assistance and that the Lord was taking care of me that I was also as high as a kite and proposing marriage to chairs and such. Today was the beginning of the work week here (Abu Dhabi) and I did alright. But the lecture kept going off on these tangents making it hard for my class to take useful notes. It was because my mental state was still flying around the cosmos. What is going on here? OK, I have TM in my upper spine; but what is this mental derangement stuff? I sure wish the drs could find out what is wrong with me. Dalton -- From: Barbara Alma balmat...@aol.com Date: Sun, 7 Nov 2010 00:48:22 -0400 (EDT) To: tmic-list@eskimo.com Subject: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 6 Nov 2010 21:48:30 -0700 Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
Re: [TMIC] hello out there
So, I have all the symptoms; But no lesions. OK, I¹m stumped, except that the brainstem lesions are still there. Dalton From: L T CHERPESKI cherp...@msn.com Date: Tue, 9 Nov 2010 21:16:00 -0700 To: Dalton Garis malugss...@gmail.com, tmic-list@eskimo.com, Carol E snow121...@hotmail.com Subject: Re: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Tue, 9 Nov 2010 20:17:15 -0800 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 mailto:snow121...@hotmail.com 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 http://jan...@centurytel.net Date: Tue, 9 Nov 2010 19:28:29 -0600 To: Dalton Garis malugss...@gmail.com http://malugss...@gmail.com , Barbara Alma balmat...@aol.com http://balmat...@aol.com , tmic-list@eskimo.com http://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 http://tmic-list@eskimo.com Subject: Re: [TMIC] hello out there Actually; I had a day-long attack of spasms yesterday which left me unable to control either my hands and arms, legs, torso or speech. Every time I tried to talk I would cramp up. And Elvis was definitely being channeled in my body. Thank heavens I had the assistance of a very nice and strong maid who visits me once a week. It was her day to visit and she stayed with me and helped me to the bathroom and into and out of chairs. It was hard to sit down because I couldn¹t make my body bend and I¹d just slide off. But we got it under control. She had to help me drink and eat. I would grab the coffee cup handle and then could not make my hand let go. In the mean time I was so grateful for her assistance and that the Lord was taking care of me that I was also as high as a kite and proposing marriage to chairs and such. Today was the beginning of the work week here (Abu Dhabi) and I did alright. But the lecture kept going off on these tangents making it hard for my class to take useful notes. It was because my mental state was still flying around the cosmos. What is going on here? OK, I have TM in my upper spine; but what is this mental derangement stuff? I sure wish the drs could find out what is wrong with me. Dalton From: Barbara Alma balmat...@aol.com http://balmat...@aol.com Date: Sun, 7 Nov 2010 00:48:22 -0400 (EDT) To: tmic-list@eskimo.com http://tmic-list@eskimo.com Subject: [TMIC] hello out there Resent-From: tmic-list@eskimo.com http://tmic-list@eskimo.com Resent-Date: Sat, 6 Nov 2010 21:48:30 -0700 Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who
Re: [TMIC] hello out there
Welcome back, Janice! Sounds like you had a wonderful time. (Sorry fellas, you might want to zone out for a minute) I'm glad your hot spells are better in the cold weather. Mine stopped immediately and never came back when TM became my special friend. One nice perk ~ Linda - Original Message - From: Janice Nicholsmailto:jan...@centurytel.net To: cherp...@msn.commailto:cherp...@msn.com ; tmic-list@eskimo.commailto:tmic-list@eskimo.com ; malugss...@gmail.commailto:malugss...@gmail.com ; Barbara Almamailto:balmat...@aol.com Sent: Tuesday, November 09, 2010 6:43 PM Subject: Re: [TMIC] hello out there Actually, I love the winter weather.At least then I don't have many hot spells. I can control that better in cold weather. Anyone else like that? Janice From: Barbara Almamailto:balmat...@aol.com Sent: Sunday, November 07, 2010 7:44 PM To: cherp...@msn.commailto:cherp...@msn.com ; tmic-list@eskimo.commailto:tmic-list@eskimo.com ; malugss...@gmail.commailto:malugss...@gmail.com Subject: Re: [TMIC] hello out there Hello all, Well, maybe I shouldn't have asked this question, but I'm glad I did. It looks like some support was needed for you guys and maybe for some just lurking and not feeling up to writing in. Believe me, I sympathize with you and your pain. This time of year, when it's cold in many parts of the country and world, my symptoms get worse also. It seems that some of us have symptoms that are exacerbated by the cold and some by heat. The barometric pressure can affect many. Mine are much worse in the cold, and especially if it's rainy. My skin can be warm to the touch, but I can feel cold to the bone (as I say). I actually think that it may be the nerves that are cold and it is so hard to warm up again. It can be really painful. I get under the blankets and also wrap my legs in blankets, sometimes a heated one, and pray it goes away soon, but I can only do that when I'm at home. I try not to go out of the house unless absolutely necessary during this time of year, and I am sure that this is why the winter blues set in. This is something we have to be very careful of, because it can cause a lot of depression. Please be aware of this. This is another reason why it's important to keep in touch. Hugs, Barbara A in Auburn CA -Original Message- From: L T CHERPESKI cherp...@msn.com To: tmic-list tmic-list@eskimo.com; Barbara Alma balmat...@aol.com; Dalton Garis malugss...@gmail.com Sent: Sun, Nov 7, 2010 4:43 pm Subject: Re: [TMIC] hello out there Hi Dalton Everyone ~~ You're right Dalton. Many of us seem to be having additional challenges right now. Could be why we've been so quiet on the list After I read your post about the horrific day you had, I did a little research, and I think I came back even more confused - sorry to say. I'm sure I've asked you this before, but I'll ask again. Have you been given any drugs specifically for seizures? If not, could your doctor put you on a seizure med for a trial period to see if it would indeed help?? I don't understand why they haven't tried this. How does anybody know if nothing has been tried??? Is Lyrica the only medication you take? Is there another neuro you could see or would your neuro consider consulting another neuro about your case? So many questions - so few answers. I don't know what to say. It's so frustrating to see you going through all of this. Hang in there and keep posting. Linda - Original Message - From: Dalton Garismailto:malugss...@gmail.com To: L T CHERPESKImailto:cherp...@msn.com ; tmic-list@eskimo.commailto:tmic-list@eskimo.com ; Barbara Almamailto:balmat...@aol.com Sent: Sunday, November 07, 2010 5:19 PM Subject: Re: [TMIC] hello out there Seems as if everyone went down at the same time. Is it possible that I might have recurrent TM? I wish I could get the neuro interested in my case. But he just keeps me in Lyrica and has no further interest. Dalton From: L T CHERPESKI cherp...@msn.commailto:cherp...@msn.com Date: Sun, 7 Nov 2010 16:33:40 -0700 To: tmic-list@eskimo.commailto:tmic-list@eskimo.com, Barbara Alma balmat...@aol.commailto:balmat...@aol.com Subject: Re: [TMIC] hello out there Resent-From: tmic-list@eskimo.commailto:tmic-list@eskimo.com Resent-Date: Sun, 7 Nov 2010 15:33:39 -0800 Have been trying to keep myself calm and quiet as I am in a full blown flare. I'm 2 months past my Rituxan infusions, which obviously is not good. Hoping they were approved last Friday and will be scheduled this week. I have Recurring TM and Rituxan has kept me attack free the last 2 years - I guess that teaches me a lesson - the hard way. Get infusions every 6 months on schedule. A real bummer
Re: [TMIC] hello out there
No, my hot flashes are not menapausal(sp).I had a complete hysterectomy 20 years ago. This just started as soon as TM did. From my neck up I get fiercely hot - not the rest of my body. Warm and humid really sets it off, but I can heat up with them too. But, the cooler I keep my body, the less chance I will get hot. Janice From: L T CHERPESKI Sent: Tuesday, November 09, 2010 10:26 PM To: tmic-list@eskimo.com ; malugss...@gmail.com ; Barbara Alma ; Janice Nichols Subject: Re: [TMIC] hello out there Welcome back, Janice! Sounds like you had a wonderful time. (Sorry fellas, you might want to zone out for a minute) I'm glad your hot spells are better in the cold weather. Mine stopped immediately and never came back when TM became my special friend. One nice perk ~ Linda - Original Message - From: Janice Nichols To: cherp...@msn.com ; tmic-list@eskimo.com ; malugss...@gmail.com ; Barbara Alma Sent: Tuesday, November 09, 2010 6:43 PM Subject: Re: [TMIC] hello out there Actually, I love the winter weather.At least then I don't have many hot spells. I can control that better in cold weather. Anyone else like that? Janice From: Barbara Alma Sent: Sunday, November 07, 2010 7:44 PM To: cherp...@msn.com ; tmic-list@eskimo.com ; malugss...@gmail.com Subject: Re: [TMIC] hello out there Hello all, Well, maybe I shouldn't have asked this question, but I'm glad I did. It looks like some support was needed for you guys and maybe for some just lurking and not feeling up to writing in. Believe me, I sympathize with you and your pain. This time of year, when it's cold in many parts of the country and world, my symptoms get worse also. It seems that some of us have symptoms that are exacerbated by the cold and some by heat. The barometric pressure can affect many. Mine are much worse in the cold, and especially if it's rainy. My skin can be warm to the touch, but I can feel cold to the bone (as I say). I actually think that it may be the nerves that are cold and it is so hard to warm up again. It can be really painful. I get under the blankets and also wrap my legs in blankets, sometimes a heated one, and pray it goes away soon, but I can only do that when I'm at home. I try not to go out of the house unless absolutely necessary during this time of year, and I am sure that this is why the winter blues set in. This is something we have to be very careful of, because it can cause a lot of depression. Please be aware of this. This is another reason why it's important to keep in touch. Hugs, Barbara A in Auburn CA -Original Message- From: L T CHERPESKI cherp...@msn.com To: tmic-list tmic-list@eskimo.com; Barbara Alma balmat...@aol.com; Dalton Garis malugss...@gmail.com Sent: Sun, Nov 7, 2010 4:43 pm Subject: Re: [TMIC] hello out there Hi Dalton Everyone ~~ You're right Dalton. Many of us seem to be having additional challenges right now. Could be why we've been so quiet on the list After I read your post about the horrific day you had, I did a little research, and I think I came back even more confused - sorry to say. I'm sure I've asked you this before, but I'll ask again. Have you been given any drugs specifically for seizures? If not, could your doctor put you on a seizure med for a trial period to see if it would indeed help?? I don't understand why they haven't tried this. How does anybody know if nothing has been tried??? Is Lyrica the only medication you take? Is there another neuro you could see or would your neuro consider consulting another neuro about your case? So many questions - so few answers. I don't know what to say. It's so frustrating to see you going through all of this. Hang in there and keep posting. Linda - Original Message - From: Dalton Garis To: L T CHERPESKI ; tmic-list@eskimo.com ; Barbara Alma Sent: Sunday, November 07, 2010 5:19 PM Subject: Re: [TMIC] hello out there Seems as if everyone went down at the same time. Is it possible that I might have recurrent TM? I wish I could get the neuro interested in my case. But he just keeps me in Lyrica and has no further interest. Dalton From: L T CHERPESKI cherp...@msn.com Date: Sun, 7 Nov 2010 16:33:40 -0700 To: tmic-list@eskimo.com, Barbara Alma balmat...@aol.com Subject: Re: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Sun, 7 Nov 2010 15:33:39 -0800 Have been trying to keep myself calm and quiet as I am in a full blown flare. I'm 2 months past my Rituxan infusions, which obviously is not good. Hoping they were approved last Friday and will be scheduled this week. I have Recurring TM and Rituxan has kept me attack free the last 2 years - I guess that teaches me a lesson
Re: [TMIC] hello out there
Re: [TMIC] hello out thereDalton, yes you still have all the symptoms. When I told you I did some research after you had such a horrible day, I was trying to find more information on brainstem lesions. Well I found a bunch of information, but I walked away with even more questions. Could you ask your doctor questions specifically about the brainstem lesions? Possibly these are causing most of your bad times? Linda - Original Message - From: Dalton Garis To: L T CHERPESKI ; tmic-list@eskimo.com ; Carol E Sent: Tuesday, November 09, 2010 9:19 PM Subject: Re: [TMIC] hello out there So, I have all the symptoms; But no lesions. OK, I'm stumped, except that the brainstem lesions are still there. Dalton -- From: L T CHERPESKI cherp...@msn.com Date: Tue, 9 Nov 2010 21:16:00 -0700 To: Dalton Garis malugss...@gmail.com, tmic-list@eskimo.com, Carol E snow121...@hotmail.com Subject: Re: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Tue, 9 Nov 2010 20:17:15 -0800 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 mailto:snow121...@hotmail.com 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 http://jan...@centurytel.net Date: Tue, 9 Nov 2010 19:28:29 -0600 To: Dalton Garis malugss...@gmail.com http://malugss...@gmail.com , Barbara Alma balmat...@aol.com http://balmat...@aol.com , tmic-list@eskimo.com http://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 http://tmic-list@eskimo.com Subject: Re: [TMIC] hello out there Actually; I had a day-long attack of spasms yesterday which left me unable to control either my hands and arms, legs, torso or speech. Every time I tried to talk I would cramp up. And Elvis was definitely being channeled in my body. Thank heavens I had the assistance of a very nice and strong maid who visits me once a week. It was her day to visit and she stayed with me and helped me to the bathroom and into and out of chairs. It was hard to sit down because I couldn't make my body bend and I'd just slide off. But we got it under control. She had to help me drink and eat. I would grab the coffee cup handle and then could not make my hand let go. In the mean time I was so grateful for her assistance and that the Lord was taking care of me that I was also as high as a kite
Re: [TMIC] hello out there
At what level is your lesion? Could be that the rest of your body has trouble sweating, so the top of your body is working overtime tto cool you off. Laura www.laurabeaudin.com --NOT just another blog! http://practical-homeschooling.org On Tue, Nov 9, 2010 at 9:33 PM, Janice Nichols jan...@centurytel.netwrote: No, my hot flashes are not menapausal(sp).I had a complete hysterectomy 20 years ago. This just started as soon as TM did. From my neck up I get fiercely hot - not the rest of my body. Warm and humid really sets it off, but I can heat up with them too. But, the cooler I keep my body, the less chance I will get hot. Janice *From:* L T CHERPESKI cherp...@msn.com *Sent:* Tuesday, November 09, 2010 10:26 PM *To:* tmic-list@eskimo.com ; malugss...@gmail.com ; Barbara Almabalmat...@aol.com; Janice Nichols jan...@centurytel.net *Subject:* Re: [TMIC] hello out there Welcome back, Janice! Sounds like you had a wonderful time. (Sorry fellas, you might want to zone out for a minute) I'm glad your hot spells are better in the cold weather. Mine stopped immediately and never came back when TM became my special friend. One nice perk ~ Linda - Original Message - *From:* Janice Nichols jan...@centurytel.net *To:* cherp...@msn.com ; tmic-list@eskimo.com ; malugss...@gmail.com ; Barbara Alma balmat...@aol.com *Sent:* Tuesday, November 09, 2010 6:43 PM *Subject:* Re: [TMIC] hello out there Actually, I love the winter weather.At least then I don't have many hot spells. I can control that better in cold weather. Anyone else like that? Janice *From:* Barbara Alma balmat...@aol.com *Sent:* Sunday, November 07, 2010 7:44 PM *To:* cherp...@msn.com ; tmic-list@eskimo.com ; malugss...@gmail.com *Subject:* Re: [TMIC] hello out there Hello all, Well, maybe I shouldn't have asked this question, but I'm glad I did. It looks like some support was needed for you guys and maybe for some just lurking and not feeling up to writing in. Believe me, I sympathize with you and your pain. This time of year, when it's cold in many parts of the country and world, my symptoms get worse also. It seems that some of us have symptoms that are exacerbated by the cold and some by heat. The barometric pressure can affect many. Mine are much worse in the cold, and especially if it's rainy. My skin can be warm to the touch, but I can feel cold to the bone (as I say). I actually think that it may be the nerves that are cold and it is so hard to warm up again. It can be really painful. I get under the blankets and also wrap my legs in blankets, sometimes a heated one, and pray it goes away soon, but I can only do that when I'm at home. I try not to go out of the house unless absolutely necessary during this time of year, and I am sure that this is why the winter blues set in. This is something we have to be very careful of, because it can cause a lot of depression. Please be aware of this. This is another reason why it's important to keep in touch. Hugs, Barbara A in Auburn CA -Original Message- From: L T CHERPESKI cherp...@msn.com To: tmic-list tmic-list@eskimo.com; Barbara Alma balmat...@aol.com; Dalton Garis malugss...@gmail.com Sent: Sun, Nov 7, 2010 4:43 pm Subject: Re: [TMIC] hello out there Hi Dalton Everyone ~~ You're right Dalton. Many of us seem to be having additional challenges right now. Could be why we've been so quiet on the list After I read your post about the horrific day you had, I did a little research, and I think I came back even more confused - sorry to say. I'm sure I've asked you this before, but I'll ask again. Have you been given any drugs specifically for seizures? If not, could your doctor put you on a seizure med for a trial period to see if it would indeed help?? I don't understand why they haven't tried this. How does anybody know if nothing has been tried??? Is Lyrica the only medication you take? Is there another neuro you could see or would your neuro consider consulting another neuro about your case? So many questions - so few answers. I don't know what to say. It's so frustrating to see you going through all of this. Hang in there and keep posting. Linda - Original Message - *From:* Dalton Garis malugss...@gmail.com *To:* L T CHERPESKI cherp...@msn.com ; tmic-list@eskimo.com ; Barbara Alma balmat...@aol.com *Sent:* Sunday, November 07, 2010 5:19 PM *Subject:* Re: [TMIC] hello out there Seems as if everyone went down at the same time. Is it possible that I might have recurrent TM? I wish I could get the neuro interested in my case. But he just keeps me in Lyrica and has no further interest. Dalton -- *From: *L T CHERPESKI cherp...@msn.com *Date: *Sun, 7 Nov 2010 16:33:40 -0700 *To: *tmic-list@eskimo.com, Barbara Alma balmat...@aol.com *Subject: *Re: [TMIC] hello out there *Resent-From
Re: [TMIC] hello out there
OK, Barb, I don't have anything new to report. Into my tenth year! Who would have thought? I always read the list but feel fairly far removed from the newly diagnosed now. Still, I'm always more than willing to help. hugs Gilly From Kanmantoo South Australia - Original Message - From: Barbara Alma To: tmic-list@eskimo.com Sent: Sunday, November 07, 2010 3:18 PM Subject: [TMIC] hello out there Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
Re: [TMIC] hello out there
i have been attempting to journalize the weather and my pain on a 1-10 scale. and it seams as if when the barametric pressure is up I hurt more. --- On Sun, 11/7/10, Barbara Alma balmat...@aol.com wrote: From: Barbara Alma balmat...@aol.com Subject: Re: [TMIC] hello out there To: cherp...@msn.com, tmic-list@eskimo.com, malugss...@gmail.com Date: Sunday, November 7, 2010, 8:44 PM Hello all, Well, maybe I shouldn't have asked this question, but I'm glad I did. It looks like some support was needed for you guys and maybe for some just lurking and not feeling up to writing in. Believe me, I sympathize with you and your pain. This time of year, when it's cold in many parts of the country and world, my symptoms get worse also. It seems that some of us have symptoms that are exacerbated by the cold and some by heat. The barometric pressure can affect many. Mine are much worse in the cold, and especially if it's rainy. My skin can be warm to the touch, but I can feel cold to the bone (as I say). I actually think that it may be the nerves that are cold and it is so hard to warm up again. It can be really painful. I get under the blankets and also wrap my legs in blankets, sometimes a heated one, and pray it goes away soon, but I can only do that when I'm at home. I try not to go out of the house unless absolutely necessary during this time of year, and I am sure that this is why the winter blues set in. This is something we have to be very careful of, because it can cause a lot of depression. Please be aware of this. This is another reason why it's important to keep in touch. Hugs, Barbara A in Auburn CA -Original Message- From: L T CHERPESKI cherp...@msn.com To: tmic-list tmic-list@eskimo.com; Barbara Alma balmat...@aol.com; Dalton Garis malugss...@gmail.com Sent: Sun, Nov 7, 2010 4:43 pm Subject: Re: [TMIC] hello out there Hi Dalton Everyone ~~ You're right Dalton. Many of us seem to be having additional challenges right now. Could be why we've been so quiet on the list After I read your post about the horrific day you had, I did a little research, and I think I came back even more confused - sorry to say. I'm sure I've asked you this before, but I'll ask again. Have you been given any drugs specifically for seizures? If not, could your doctor put you on a seizure med for a trial period to see if it would indeed help?? I don't understand why they haven't tried this. How does anybody know if nothing has been tried??? Is Lyrica the only medication you take? Is there another neuro you could see or would your neuro consider consulting another neuro about your case? So many questions - so few answers. I don't know what to say. It's so frustrating to see you going through all of this. Hang in there and keep posting. Linda - Original Message - From: Dalton Garis To: L T CHERPESKI ; tmic-list@eskimo.com ; Barbara Alma Sent: Sunday, November 07, 2010 5:19 PM Subject: Re: [TMIC] hello out there Seems as if everyone went down at the same time. Is it possible that I might have recurrent TM? I wish I could get the neuro interested in my case. But he just keeps me in Lyrica and has no further interest. Dalton From: L T CHERPESKI cherp...@msn.com Date: Sun, 7 Nov 2010 16:33:40 -0700 To: tmic-list@eskimo.com, Barbara Alma balmat...@aol.com Subject: Re: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Sun, 7 Nov 2010 15:33:39 -0800 Have been trying to keep myself calm and quiet as I am in a full blown flare. I'm 2 months past my Rituxan infusions, which obviously is not good. Hoping they were approved last Friday and will be scheduled this week. I have Recurring TM and Rituxan has kept me attack free the last 2 years - I guess that teaches me a lesson - the hard way. Get infusions every 6 months on schedule. A real bummer~ Linda in Eagle, ID
Re: [TMIC] hello out there
John, I find that any time the barometric pressure changes, I can feel it. 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: john snodgrass jcs...@yahoo.com To: transverse myelitis tmic-list@eskimo.com Sent: Monday, November 8, 2010 7:55:37 AM Subject: Re: [TMIC] hello out there i have been attempting to journalize the weather and my pain on a 1-10 scale. and it seams as if when the barametric pressure is up I hurt more. --- On Sun, 11/7/10, Barbara Alma balmat...@aol.com wrote: From: Barbara Alma balmat...@aol.com Subject: Re: [TMIC] hello out there To: cherp...@msn.com, tmic-list@eskimo.com, malugss...@gmail.com Date: Sunday, November 7, 2010, 8:44 PM Hello all, Well, maybe I shouldn't have asked this question, but I'm glad I did. It looks like some support was needed for you guys and maybe for some just lurking and not feeling up to writing in. Believe me, I sympathize with you and your pain. This time of year, when it's cold in many parts of the country and world, my symptoms get worse also. It seems that some of us have symptoms that are exacerbated by the cold and some by heat. The barometric pressure can affect many. Mine are much worse in the cold, and especially if it's rainy. My skin can be warm to the touch, but I can feel cold to the bone (as I say). I actually think that it may be the nerves that are cold and it is so hard to warm up again. It can be really painful. I get under the blankets and also wrap my legs in blankets, sometimes a heated one, and pray it goes away soon, but I can only do that when I'm at home. I try not to go out of the house unless absolutely necessary during this time of year, and I am sure that this is why the winter blues set in. This is something we have to be very careful of, because it can cause a lot of depression. Please be aware of this. This is another reason why it's important to keep in touch. Hugs, Barbara A in Auburn CA -Original Message- From: L T CHERPESKI cherp...@msn.com To: tmic-list tmic-list@eskimo.com; Barbara Alma balmat...@aol.com; Dalton Garis malugss...@gmail.com Sent: Sun, Nov 7, 2010 4:43 pm Subject: Re: [TMIC] hello out there Hi Dalton Everyone ~~ You're right Dalton. Many of us seem to be having additional challenges right now. Could be why we've been so quiet on the list After I read your post about the horrific day you had, I did a little research, and I think I came back even more confused - sorry to say. I'm sure I've asked you this before, but I'll ask again. Have you been given any drugs specifically for seizures? If not, could your doctor put you on a seizure med for a trial period to see if it would indeed help?? I don't understand why they haven't tried this. How does anybody know if nothing has been tried??? Is Lyrica the only medication you take? Is there another neuro you could see or would your neuro consider consulting another neuro about your case? So many questions - so few answers. I don't know what to say. It's so frustrating to see you going through all of this. Hang in there and keep posting. Linda - Original Message - From: Dalton Garis To: L T CHERPESKI ; tmic-list@eskimo.com ; Barbara Alma Sent: Sunday, November 07, 2010 5:19 PM Subject: Re: [TMIC] hello out there Seems as if everyone went down at the same time. Is it possible that I might have recurrent TM? I wish I could get the neuro interested in my case. But he just keeps me in Lyrica and has no further interest. Dalton From: L T CHERPESKI cherp...@msn.com Date: Sun, 7 Nov 2010 16:33:40 -0700 To: tmic-list@eskimo.com , Barbara Alma balmat...@aol.com Subject: Re: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Sun, 7 Nov 2010 15:33:39 -0800 Have been trying to keep myself calm and quiet as I am in a full blown flare. I'm 2 months past my Rituxan infusions, which obviously is not good. Hoping they were approved last Friday and will be scheduled this week. I have Recurring TM and Rituxan has kept me attack free the last 2 years - I guess that teaches me a lesson - the hard way. Get infusions every 6 months on schedule. A real bummer~ Linda in Eagle, ID
Re: [TMIC] hello out there
I would say the pain is not as intense as it has been but am afraid i will jinx myself! --- On Sun, 11/7/10, Barbara Alma balmat...@aol.com wrote: From: Barbara Alma balmat...@aol.com Subject: [TMIC] hello out there To: tmic-list@eskimo.com Date: Sunday, November 7, 2010, 12:48 AM Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
RE: [TMIC] hello out there
Barb I guess everyone is busy with the weekend. No news is good news. Hopefully, everyone is doing as well as can be expected with TM. I know I always look forward to all the posts. Take care all. Patti - Wisconsin From: Barbara Alma [mailto:balmat...@aol.com] Sent: Saturday, November 06, 2010 11:48 PM To: tmic-list@eskimo.com Subject: [TMIC] hello out there Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
Re: [TMIC] hello out there
Actually; I had a day-long attack of spasms yesterday which left me unable to control either my hands and arms, legs, torso or speech. Every time I tried to talk I would cramp up. And Elvis was definitely being channeled in my body. Thank heavens I had the assistance of a very nice and strong maid who visits me once a week. It was her day to visit and she stayed with me and helped me to the bathroom and into and out of chairs. It was hard to sit down because I couldn¹t make my body bend and I¹d just slide off. But we got it under control. She had to help me drink and eat. I would grab the coffee cup handle and then could not make my hand let go. In the mean time I was so grateful for her assistance and that the Lord was taking care of me that I was also as high as a kite and proposing marriage to chairs and such. Today was the beginning of the work week here (Abu Dhabi) and I did alright. But the lecture kept going off on these tangents making it hard for my class to take useful notes. It was because my mental state was still flying around the cosmos. What is going on here? OK, I have TM in my upper spine; but what is this mental derangement stuff? I sure wish the drs could find out what is wrong with me. Dalton From: Barbara Alma balmat...@aol.com Date: Sun, 7 Nov 2010 00:48:22 -0400 (EDT) To: tmic-list@eskimo.com Subject: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 6 Nov 2010 21:48:30 -0700 Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
Re: [TMIC] hello out there
Dalton, Have you been properly screened for MS? Laura www.laurabeaudin.com --NOT just another blog! http://practical-homeschooling.org On Sun, Nov 7, 2010 at 9:23 AM, Dalton Garis malugss...@gmail.com wrote: Actually; I had a day-long attack of spasms yesterday which left me unable to control either my hands and arms, legs, torso or speech. Every time I tried to talk I would cramp up. And Elvis was definitely being channeled in my body. Thank heavens I had the assistance of a very nice and strong maid who visits me once a week. It was her day to visit and she stayed with me and helped me to the bathroom and into and out of chairs. It was hard to sit down because I couldn’t make my body bend and I’d just slide off. But we got it under control. She had to help me drink and eat. I would grab the coffee cup handle and then could not make my hand let go. In the mean time I was so grateful for her assistance and that the Lord was taking care of me that I was also as high as a kite and proposing marriage to chairs and such. Today was the beginning of the work week here (Abu Dhabi) and I did alright. But the lecture kept going off on these tangents making it hard for my class to take useful notes. It was because my mental state was still flying around the cosmos. What is going on here? OK, I have TM in my upper spine; but what is this mental derangement stuff? I sure wish the drs could find out what is wrong with me. Dalton -- *From: *Barbara Alma balmat...@aol.com *Date: *Sun, 7 Nov 2010 00:48:22 -0400 (EDT) *To: *tmic-list@eskimo.com *Subject: *[TMIC] hello out there *Resent-From: *tmic-list@eskimo.com *Resent-Date: *Sat, 6 Nov 2010 21:48:30 -0700 Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
Re: [TMIC] hello out there
Dalton, So sorry that you had another bad day. With the onset of cold wether, I've been having a bad time myself. Somehow, I got a briuse on my big toe but the pain wasn't/isn't in my toe. I could hardly move for 2 days ago. I wore protection and would just sit wet myself because it hurt so bad to move IF I could move - my R leg would give out on me. My back felt as if someone was inside trying to tear everything from the inside out! If I didn't move, I had the normal back pain. I fell one other time and my L foot was bruised. For the next 5 days if I put any weight on theL foot, I would fall and the pain was horriable! Has anyone experienced pain, or the results of pain, but not in the area of the injury? 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: Dalton Garis malugss...@gmail.com To: Barbara Alma balmat...@aol.com, tmic-list@eskimo.com Sent: Sunday, November 7, 2010 11:23:44 AM Subject: Re: [TMIC] hello out there Actually; I had a day-long attack of spasms yesterday which left me unable to control either my hands and arms, legs, torso or speech. Every time I tried to talk I would cramp up. And Elvis was definitely being channeled in my body. Thank heavens I had the assistance of a very nice and strong maid who visits me once a week. It was her day to visit and she stayed with me and helped me to the bathroom and into and out of chairs. It was hard to sit down because I couldn’t make my body bend and I’d just slide off. But we got it under control. She had to help me drink and eat. I would grab the coffee cup handle and then could not make my hand let go. In the mean time I was so grateful for her assistance and that the Lord was taking care of me that I was also as high as a kite and proposing marriage to chairs and such. Today was the beginning of the work week here (Abu Dhabi) and I did alright. But the lecture kept going off on these tangents making it hard for my class to take useful notes. It was because my mental state was still flying around the cosmos. What is going on here? OK, I have TM in my upper spine; but what is this mental derangement stuff? I sure wish the drs could find out what is wrong with me. Dalton From: Barbara Alma balmat...@aol.com Date: Sun, 7 Nov 2010 00:48:22 -0400 (EDT) To: tmic-list@eskimo.com Subject: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 6 Nov 2010 21:48:30 -0700 Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA From: Barbara Alma balmat...@aol.com Date: Sun, 7 Nov 2010 00:48:22 -0400 (EDT) To: tmic-list@eskimo.com Subject: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 6 Nov 2010 21:48:30 -0700 Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
Re: [TMIC] hello out there
was doing good until yesterday, went on a 3 mile ALS walk (ok I rolled while someone pushed) well except for down hill then gravity took over.) The extreme cold has me hurting today but once i rest and and warm back up all should be good Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
Re: [TMIC] hello out there
Have been trying to keep myself calm and quiet as I am in a full blown flare. I'm 2 months past my Rituxan infusions, which obviously is not good. Hoping they were approved last Friday and will be scheduled this week. I have Recurring TM and Rituxan has kept me attack free the last 2 years - I guess that teaches me a lesson - the hard way. Get infusions every 6 months on schedule. A real bummer~ Linda in Eagle, ID - Original Message - From: Barbara Almamailto:balmat...@aol.com To: tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Saturday, November 06, 2010 9:48 PM Subject: [TMIC] hello out there Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
Re: [TMIC] hello out there
Seems as if everyone went down at the same time. Is it possible that I might have recurrent TM? I wish I could get the neuro interested in my case. But he just keeps me in Lyrica and has no further interest. Dalton From: L T CHERPESKI cherp...@msn.com Date: Sun, 7 Nov 2010 16:33:40 -0700 To: tmic-list@eskimo.com, Barbara Alma balmat...@aol.com Subject: Re: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Sun, 7 Nov 2010 15:33:39 -0800 Have been trying to keep myself calm and quiet as I am in a full blown flare. I'm 2 months past my Rituxan infusions, which obviously is not good. Hoping they were approved last Friday and will be scheduled this week. I have Recurring TM and Rituxan has kept me attack free the last 2 years - I guess that teaches me a lesson - the hard way. Get infusions every 6 months on schedule. A real bummer~ Linda in Eagle, ID - Original Message - From: Barbara Alma mailto:balmat...@aol.com To: tmic-list@eskimo.com Sent: Saturday, November 06, 2010 9:48 PM Subject: [TMIC] hello out there Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
Re: [TMIC] hello out there
Re: [TMIC] hello out thereHi Dalton Everyone ~~ You're right Dalton. Many of us seem to be having additional challenges right now. Could be why we've been so quiet on the list After I read your post about the horrific day you had, I did a little research, and I think I came back even more confused - sorry to say. I'm sure I've asked you this before, but I'll ask again. Have you been given any drugs specifically for seizures? If not, could your doctor put you on a seizure med for a trial period to see if it would indeed help?? I don't understand why they haven't tried this. How does anybody know if nothing has been tried??? Is Lyrica the only medication you take? Is there another neuro you could see or would your neuro consider consulting another neuro about your case? So many questions - so few answers. I don't know what to say. It's so frustrating to see you going through all of this. Hang in there and keep posting. Linda - Original Message - From: Dalton Garismailto:malugss...@gmail.com To: L T CHERPESKImailto:cherp...@msn.com ; tmic-list@eskimo.commailto:tmic-list@eskimo.com ; Barbara Almamailto:balmat...@aol.com Sent: Sunday, November 07, 2010 5:19 PM Subject: Re: [TMIC] hello out there Seems as if everyone went down at the same time. Is it possible that I might have recurrent TM? I wish I could get the neuro interested in my case. But he just keeps me in Lyrica and has no further interest. Dalton -- From: L T CHERPESKI cherp...@msn.commailto:cherp...@msn.com Date: Sun, 7 Nov 2010 16:33:40 -0700 To: tmic-list@eskimo.commailto:tmic-list@eskimo.com, Barbara Alma balmat...@aol.commailto:balmat...@aol.com Subject: Re: [TMIC] hello out there Resent-From: tmic-list@eskimo.commailto:tmic-list@eskimo.com Resent-Date: Sun, 7 Nov 2010 15:33:39 -0800 Have been trying to keep myself calm and quiet as I am in a full blown flare. I'm 2 months past my Rituxan infusions, which obviously is not good. Hoping they were approved last Friday and will be scheduled this week. I have Recurring TM and Rituxan has kept me attack free the last 2 years - I guess that teaches me a lesson - the hard way. Get infusions every 6 months on schedule. A real bummer~ Linda in Eagle, ID - Original Message - From: Barbara Alma mailto:balmat...@aol.commailto:balmat...@aol.com To: tmic-list@eskimo.comabout:tmic-list@eskimo.com Sent: Saturday, November 06, 2010 9:48 PM Subject: [TMIC] hello out there Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
Re: [TMIC] hello out there
John - glad to hear your pain level is a little better. I had to chuckle - I'm just going to think positive and say no jinxing (is that even a word?) Be well Linda - Original Message - From: john snodgrassmailto:jcs...@yahoo.com To: transverse myelitismailto:tmic-list@eskimo.com Sent: Sunday, November 07, 2010 2:59 AM Subject: Re: [TMIC] hello out there I would say the pain is not as intense as it has been but am afraid i will jinx myself! --- On Sun, 11/7/10, Barbara Alma balmat...@aol.commailto:balmat...@aol.com wrote: From: Barbara Alma balmat...@aol.commailto:balmat...@aol.com Subject: [TMIC] hello out there To: tmic-list@eskimo.commailto:tmic-list@eskimo.com Date: Sunday, November 7, 2010, 12:48 AM Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
Re: [TMIC] hello out there
Our bodies really don't care for that cold weather. I hope when you warm up and are rested you'll feel much better. We haven't had any cold weather yet - and am Not looking forward to it. Take care of yourself Linda Original Message - From: kimharrison...@comcast.netmailto:kimharrison...@comcast.net To: tmic-list@eskimo.commailto:tmic-list@eskimo.com Cc: tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Sunday, November 07, 2010 1:09 PM Subject: Re: [TMIC] hello out there was doing good until yesterday, went on a 3 mile ALS walk (ok I rolled while someone pushed) well except for down hill then gravity took over.) The extreme cold has me hurting today but once i rest and and warm back up all should be good Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
Re: [TMIC] hello out there
Hello all, Well, maybe I shouldn't have asked this question, but I'm glad I did. It looks like some support was needed for you guys and maybe for some just lurking and not feeling up to writing in. Believe me, I sympathize with you and your pain. This time of year, when it's cold in many parts of the country and world, my symptoms get worse also. It seems that some of us have symptoms that are exacerbated by the cold and some by heat. The barometric pressure can affect many. Mine are much worse in the cold, and especially if it's rainy. My skin can be warm to the touch, but I can feel cold to the bone (as I say). I actually think that it may be the nerves that are cold and it is so hard to warm up again. It can be really painful. I get under the blankets and also wrap my legs in blankets, sometimes a heated one, and pray it goes away soon, but I can only do that when I'm at home. I try not to go out of the house unless absolutely necessary during this time of year, and I am sure that this is why the winter blues set in. This is something we have to be very careful of, because it can cause a lot of depression. Please be aware of this. This is another reason why it's important to keep in touch. Hugs, Barbara A in Auburn CA -Original Message- From: L T CHERPESKI cherp...@msn.com To: tmic-list tmic-list@eskimo.com; Barbara Alma balmat...@aol.com; Dalton Garis malugss...@gmail.com Sent: Sun, Nov 7, 2010 4:43 pm Subject: Re: [TMIC] hello out there Hi Dalton Everyone ~~ You're right Dalton. Many of us seem to be having additional challenges right now. Could be why we've been so quiet on the list After I read your post about the horrific day you had, I did a little research, and I think I came back even more confused - sorry to say. I'm sure I've asked you this before, but I'll ask again. Have you been given any drugs specifically for seizures? If not, could your doctor put you on a seizure med for a trial period to see if it would indeed help?? I don't understand why they haven't tried this. How does anybody know if nothing has been tried??? Is Lyrica the only medication you take? Is there another neuro you could see or would your neuro consider consulting another neuro about your case? So many questions - so few answers. I don't know what to say. It's so frustrating to see you going through all of this. Hang in there and keep posting. Linda - Original Message - From: Dalton Garis To: L T CHERPESKI ; tmic-list@eskimo.com ; Barbara Alma Sent: Sunday, November 07, 2010 5:19 PM Subject: Re: [TMIC] hello out there Seems as if everyone went down at the same time. Is it possible that I might have recurrent TM? I wish I could get the neuro interested in my case. But he just keeps me in Lyrica and has no further interest. Dalton From: L T CHERPESKI cherp...@msn.com Date: Sun, 7 Nov 2010 16:33:40 -0700 To: tmic-list@eskimo.com, Barbara Alma balmat...@aol.com Subject: Re: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Sun, 7 Nov 2010 15:33:39 -0800 Have been trying to keep myself calm and quiet as I am in a full blown flare. I'm 2 months past my Rituxan infusions, which obviously is not good. Hoping they were approved last Friday and will be scheduled this week. I have Recurring TM and Rituxan has kept me attack free the last 2 years - I guess that teaches me a lesson - the hard way. Get infusions every 6 months on schedule. A real bummer~ Linda in Eagle, ID
