[TMIC] Re: tmic-digest Digest V2009 #796
Please remove from the list.Thank you Dee From: "tmic-digest-requ...@eskimo.com" tmic-digest-requ...@eskimo.comTo: tmic-dig...@eskimo.comSent: Tuesday, August 11, 2009 5:59:28 PMSubject: tmic-digest Digest V2009 #796Note: Forwarded message is attached.-Inline Message Follows-tmic-digest DigestVolume 2009 : Issue 796Today's Topics: [TMIC] happy you are in my life [ Catherine camoa...@yahoo.com ] Re: [TMIC] That banding feeling [ pjv1...@chartermi.net ] [TMIC] Update on Jim [ cjb...@aol.com ] Re: [TMIC] That banding feeling [ "jrushton" jrush...@columbiaenergy ]-Inline Message Follows- Jeanne,I am so happy you are in my life too. The rest of our group included! I care so much about you all.Catherine From: jrushton jrush...@columbiaenergyllc.comTo: laura.eich...@gmail.com; tmic tmic-list@eskimo.comSent: Tuesday, August 11, 2009 11:08:09 PMSubject: Re: [TMIC] That banding feeling The banding came on immediately with the TM and has never left. Without the meds, it is excruciatingly painful and just heads south to my toes. Funny how you can hurt so bad and 'not feel'??? Explain that to someone?? ::)) Gosh, I'm so happy you all are in my life..Jeanne ---Original Message--- From: laura.eich...@gmail.com Date: 8/10/2009 10:56:05 PM To: tmic-list@eskimo.com Subject: [TMIC] That banding feeling Those of you who got that banding feeling do you all just have TM or did you also get subsequently diagnosed with MS too? And if you did experience the banding feeling, did you experience it at the beginning of your TM (or MS) journey or somewhere down the road? :-)Just wondering if TM'ers get the banding feeling or is it only those that get MS too. I had it at the start of my TM but it went away after a month or two. I had a very mild case of TM and as of yet not diagnosed with MS. Thanks!-- Laura -Inline Message Follows-I've had TM for five years and don't "expect" an MS diagnosis. I've had the banding trom the beginning. During one of my steroid IV's (first five days) I rang for help and told the nurse I couldn't breath and something was squeezing my chest. It was painful and I asked her if I could be having a heart attack. I still get banding on a regular basis, however, I don't panic, I work harder at breathing and hope its time for some Baclofin.Patti - Michigan laura.eich...@gmail.com wrote: Those of you who got that banding feeling do you all just have TM or did you also get subsequently diagnosed with MS too? And if you did experience the banding feeling, did you experience it at the beginning of your TM (or MS) journey or somewhere down the road? :-) Just wondering if TM'ers get the banding feeling or is it only those that get MS too. I had it at the start of my TM but it went away after a month or two. I had a very mild case of TM and as of yet not diagnosed with MS. Thanks! -- Laura-Inline Message Follows- Wish I had something more definite to tell but this is what I know for sure. Jim is still in the Select Speciality hospital in Pontiac,Mi. They are telling me he is almost definitely going to be transferred to Marlette Hospital which is only 22 miles from home instead of about 65. He has an infection which they are monitoring. I am pulling for this as I have very good feelings about this place. Please say a few more prayers for him as we will continue to for each of you. Our love, carol and jim TIAD -Inline Message Follows- I can't figure out why I only get some of the TMIC notes??? Anyone else have the same problem? Jeanne ---Original Message--- From: pjv1...@chartermi.net Date: 8/11/2009 6:38:33 PM To: laura.eich...@gmail.com; tmic-list@eskimo.com Subject: Re: [TMIC] That banding feeling I've had TM for five years and don't "expect" an MS diagnosis.I've had the banding trom the beginning.During one of my steroid IV's (first five days) I rang for help and told the nurse I couldn't breath and something was squeezing my chest.It was painful and I asked her if I could be having a heart attack. I still get banding on a regular basis, however, I don't panic, I work harder at breathing and hope its time for some Baclofin. Patti - Michigan laura.eich...@gmail.com wrote: Those of you who got that banding feeling do you all just have TM or did you also get subsequently diagnosed with MS too? And if you did experience the banding feeling, did you experience it at the beginning of your TM (or MS) journey or somewhere down the road? :-) Just wondering if TM'ers get the banding feeling or is it only those that get MS too. I had it at the start of my TM but it went away after a month or two. I had a very mild case of TM and as of yet not diagnosed with MS. Thanks! -- Laura
[TMIC] Re: tmic-digest Digest V2009 #383
Delete from mailing list Dee --- On Fri, 5/1/09, tmic-digest-requ...@eskimo.com tmic-digest-requ...@eskimo.com wrote: From: tmic-digest-requ...@eskimo.com tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2009 #383 To: tmic-dig...@eskimo.com Date: Friday, May 1, 2009, 8:32 PM tmic-digest Digest Volume 2009 : Issue 383 Today's Topics: Re: [TMIC] wow, you work too hard Tr [ Pieter and Heather pieterheather ] Re: [TMIC] Enough sleep and husbands [ Pieter and Heather pieterheather ] Re: [TMIC] New Month, New Efforts [ Pieter and Heather pieterheather ] Janice, No, it doesn't. I do find that the Zanaflex though has helped to relax me and I get a better sleep. Apparently for me it relaxes the bladder and I get to sleep. At least that is how I understand it. I actually don't mind getting up once or twice in the night. It is the only time I move when sleeping. I go to sleep on my one side. I never move. Then my body somehow wakes me. Sometimes with muscle spasms in my legs. I then get up, go to the bathroom, get back to bed and lay on the opposite side. After another 3 or 4 and once in a while 5 hours I get up again. Since I have been taking the Zanaflex I feel I get a longer sleep. I was told though that the Zanaflex (at 4 mg for me) effect only last for about 2 hours. HOwever, that is enough time for me to fall asleep and I get to relax then. Heather - Original Message - From: Janice To: Pieter and Heather ; balmat...@aol.com ; mother...@msn.com ; tmic-list@eskimo.com Sent: Friday, May 01, 2009 6:35 PM Subject: Re: [TMIC] wow, you work too hard Trudy Heather, Does Baclofen make you have to go the bathroom a lot? Janice - Original Message - From: Pieter and Heather To: balmat...@aol.com ; mother...@msn.com ; tmic-list@eskimo.com Sent: Friday, May 01, 2009 12:49 AM Subject: Re: [TMIC] wow, you work too hard Trudy Barbara, Has your doctor ever suggested or have you ever tried Zanaflex? It is also a muscle relaxant. I take 40 mg of Baclofen in 4 divided doses throughout the day and one of the doses is at bedtime. However, I also take a 4mg tablet of Zanaflex right before bed. I find that I do not have to get up to the bathroom every 2 hours during the night. Now I am able to go 4 or and sometimes 5 hours at a time during the night. That happened when I started the Zanaflex. Makes a big difference when we get a pretty good night sleep. I know that some other people on the list take more Zanaflex than that but for me it works. Heather in Calgary - Original Message - From: balmat...@aol.com To: mother...@msn.com ; tmic-list@eskimo.com Sent: Thursday, April 30, 2009 3:00 PM Subject: [TMIC] wow, you work too hard Trudy Hi Trudy, You work too hard, I could not clean all day, whether I wanted to or not. If not for a automatic washer/dryer, the wash would not get done. And, if it goes for floors, I can do a small amount but not a lot. It kills my back, and I'm in bed for days. So, it's someone else's job. I do clean the spots on the kitchen floor iwth paper towels though from time to time, since hubby or daughter in-law aren't really responsive on the job, lol. It doesn't seem to be as important to them that it is and looks clean as it is to me. My speed is dusting and cleaning kitchen/bathrooms and laundry. I can do most things that are off the floor and I cannot do too much in a day and still manage to cook dinner. I don't cook dinner everyday, but try to do it most days. Pete (hubby) usually handles breakfast most days and it's a nice trade off as he loves breakfast. That's one of the good parts of his retirement. He also makes my coffee in the morning and then again at night. And, he is sure a handy guy to have around I know that I don't think that I could have gotten through this whole TM thing without him, he's been so good at accepting the changes that it has made in our lives. I say accepting, and I am not sure it is the right word, as it is a hard thing to say. We do have to accept it, don't have to like it as none of us do, but we just roll with it. It just is what it is. Can't change it, and cannot deny it anymore, although I tried that for about! 18 months. Now, it's been almost 10 years. I use 40 mg Baclofen at night for spasms, and generally it works pretty well, although there are those nights when it doesn't seem to work. Maybe it is and if I hadn't taken it, they would be a whole lot worse, but they definately keep me from sleeping. That is usually on a day that I've done too much. I've had 2 DVT's in my left leg, and sometimes I think that the problems and pain in that leg are worse than the complications that TM has caused in my life. Although, I didn't get the DVT's until I was in the hospital paralyzed from TM. Darned leg! But I have slept 3 nights straight and am a happy camper
[TMIC] Re: tmic-digest Digest V2009 #255
Please remove me from the mailing e-mail list. My husband Arthur made his
transition 3/20/09. I appreciate the information and friendship available to us
on this site. Again thank you all and I know God is blessing us each and every
one.
Dee
--- On Thu, 4/9/09, tmic-digest-requ...@eskimo.com
tmic-digest-requ...@eskimo.com wrote:
From: tmic-digest-requ...@eskimo.com tmic-digest-requ...@eskimo.com
Subject: tmic-digest Digest V2009 #255
To: tmic-dig...@eskimo.com
Date: Thursday, April 9, 2009, 6:55 PM
tmic-digest Digest Volume 2009 : Issue 255
Today's Topics:
Re: [TMIC] RE: tmic-digest Digest V2 [ Janice
jan...@centurytel.net ]
#yiv338963554 .hmmessage P {
PADDING-RIGHT:0px;PADDING-LEFT:0px;PADDING-BOTTOM:0px;MARGIN:0px;PADDING-TOP:0px;}
#yiv338963554 {
FONT-SIZE:10pt;FONT-FAMILY:Verdana;}
Okay, you all are making me feel braver about traveling. Also, I have a great
husband to help me. Marieke, you surprised me when you said you wear a
brace. How did that come about and how does it help you? Janice
- Original Message -
From: marieke dufresne
To: tmic-list@eskimo.com
Sent: Thursday, April 09, 2009 3:45 PM
Subject: [TMIC] RE: tmic-digest Digest V2009 #247
I have travelled by plane alone and with my boyfriend (now ex). Last time I
went alone was from Montreal QC, Canada to Seattle, WA. Took 2 planes there and
2 back. (Mtl to Toronto to Seattle there, Seattle to Vancouver BC to Mtl back).
The long rides were 6 hrs, the short was 1.5 hrs (Mtl-TO) and 30 min (SeaTac to
Van).
I travel with my wheelchair and bring my cane and wear my long leg brace. When
I travel alone I usually get bumped to FIRST Class for FREE! I ask for seats
close to the bathroom (and often they figure since I am alone I will need more
help as I am in a chair, and they have more time to help when in 1st class).
The first time I travelled alone I was nervous about going through security,
the only time they ever gave me problems was going from Mtl to TO to Seattle.
The Mtl security (US side) was ok really, but one lady there wanted me to take
off my brace... um, I need to take off my shoes/pants.. I just looked at them
and said, it's a brace that surrounds my leg, no hollow parts, I can't hide
anything there. I was pissed, not b/c that they wanted to check it, that's
fine, but it was her attitude that really got to me. She was rude and talked
like I was mentally challenged. Um , hello, I may be in a wheelchair, but I
am perfectly capable of making conversation! Grrr...
Don't let the difficulties of travelling stop you! It sounds harder than it is,
and I was plenty worried, but it turned out just fine and I had a great flight!
(the attendents were so very nice and helpful and it doesn't hurt that I look
under 18 sometimes!).
Marieke 33yo, t...@t1 since March 18, 2004
Date: Thu, 9 Apr 2009 12:38:45 -0700
From: tmic-digest-requ...@eskimo.com
Subject: tmic-digest Digest V2009 #247
To: tmic-dig...@eskimo.com
--Forwarded Message Attachment--
tmic-digest Digest Volume 2009 : Issue 247
Today's Topics:
Re: [TMIC] Lack of Communication [ Trudy Ogilvie mother...@gmail.com ]
--Forwarded Message Attachment--
Date: Thu, 9 Apr 2009 14:44:48 -0400
From: mother...@gmail.com
To: pieterheat...@shaw.ca
CC: tmic-list@eskimo.com
Subject: Re: [TMIC] Lack of Communication
Heather I have found that sometimes you just have to do what you have to do!!
I flew alone to be with my mom when she was in her late 80's and I was so glad
that I did. Everyone was so kind and helpful. I too use a walker and sometimes
a cane! Long trips are awful but my son is getting married in Lima, Peru in
November and I am definitely going to be there! I have hand controls on my car
because I do not have any real control over my legs. All rental cars have
handicapped equipped cars. And they are not allowed to charge extra for the
device. There are different types but it's so easy, you catch on very quickly.
Tho it sounds like you have lots of people to ferry you around. Have a
wonderful time!! I love it when our family gets together! Cherish those
moments!
Again, ENJOY!!!
Trudy
On Thu, Apr 9, 2009 at 1:20 AM, Pieter and Heather pieterheat...@shaw.ca
wrote:
Janice et al,
I will be flying. I have done this before. I take my walker and my cane. I
get a bulkhead seat. Hubby and I were back to Ontario last fall. However, he
just doesn't feel like going this soon. However, my Mom is 85 so I feel I want
to go. My daughter, 2 sisters and all their families are there as well as my
husbands four sisters. So there will be lots of people to visit as well as my
old friends. My only problem is that when I get there I have to rely on others
to ferry me around. I can only drive with the left foot accelorator. It is a
four hour flight which seems quite long. I also take my air/gel filled seat
cushion from my wheelchair.
[TMIC] Re: tmic-digest Digest V2009 #237
My husband Arthur was diagnosed with TM several years ago. A new neuro examined him later and tried to tell me it was not TM, I knew better. I sought another opinion. We had moved to a different area to live. Anyway Art at the age of 81 made his transition.Wehad a beautiful memorial service for him. I want to thank all of you and this site. We learned a lot about the disease and how to manage it. Keep up this important site. I would however like to be taken off the list. Again peace and blessings to all. Dee--- On Wed, 4/8/09, tmic-digest-requ...@eskimo.com tmic-digest-requ...@eskimo.com wrote: From: tmic-digest-requ...@eskimo.com tmic-digest-requ...@eskimo.comSubject: tmic-digest Digest V2009 #237To: tmic-dig...@eskimo.comDate: Wednesday, April 8, 2009, 6:53 PMtmic-digest DigestVolume 2009 : Issue 237 Today's Topics: Re: [TMIC] Re: over heating [ "Janice" jan...@centurytel.net ] You all are describing more of a "painful" heat, but what I feel is more like a menopause heat flash - but it lasts longer, and it makes me very weak and light headed. Anyone else feel that way? Janice - Original Message - From: jrushton To: CANDIS KALLEY ; tmic Sent: Wednesday, April 08, 2009 8:57 AM Subject: Re: [TMIC] Re: over heating Your words, Candy, are an echo of mine!! You could not have said it better. I was going to send you a note, Lynne, but now there is no need!!Good to have us all start to come out of the woodwork, isn't it? :)) Jeanne in Dayton ---Original Message--- From: CANDIS KALLEY Date: 4/8/2009 10:39:53 AM To: tmic-list Subject: Re: [TMIC] Re: over heating Oh the joys of TM - yes I also have the same problem - our internal thermostats are also affected. Once you go either direction, hot or cold, it seems like forever before it evens out. I don't know how many times I've woke up sweating like a race horse and then the next minute I'm freezing and it takes forever to get back to sleep. I know it's not menopause because that happened many a year ago and quit long before TM. My legs burn like they have 2nd degree sunburn while my feet feel as if they are in an ice bucket! The burning, itchy, stingy occurs all over the body for whatever reason. It seems as if everyday its the same but different in different ways. 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: "lynne myers" lynnemye...@yahoo.comTo: "tmic" tmic-list@eskimo.comSent: Wednesday, April 8, 2009 8:45:37 AM GMT -05:00 US/Canada EasternSubject: [TMIC] Re: over heating I don't know about anyone else but I have had problems with over heating since TM hit. Seems like I am constantly putting on and taking off clothes. Don't remember the last time I was able to crawl into bed and snuggle down under the covers without having to throw them offa couple of minutes later. Also have a problem withfeeling like the top two thirds of my back are on fire. Lynne
[TMIC] Re: tmic-digest Digest V2008 #142
We live in the Fontana, Riverside Area, Kaiser members. Anyone have any
experience with a Nuero that knows TM?? Any suggestions as how to locate one?
All suggestions welcome. Dee for Art diagnosed about 2003. Not walking, depends
on scooter. Can stand with support. Takes very slow baby steps. Me, caregiver
getting weary.
[EMAIL PROTECTED] wrote:
tmic-digest Digest Volume 2008 : Issue 142
Today's Topics:
[TMIC] queston [ Robert Pall Re: [TMIC] queston [ [EMAIL PROTECTED] Re:
[TMIC] queston [ [EMAIL PROTECTED] ]
[TMIC] Thank you [ Robert Pall Re: [TMIC] queston [ jrushton Re: [TMIC]
queston [ jrushton Re: [TMIC] Thank you [ jrushton Date: Mon, 31 Mar 2008
09:00:31 -0400
From: Robert Pall [EMAIL PROTECTED]
To: tmic-list@eskimo.com
Subject: [TMIC] queston
Need a little help! After more than 10 years I started having new
symptoms in my left (the good one) leg. My left leg has always had pins
needles
but this weekend I had the burning (freezing) sensation and although it
has not gotten worse..it has not gone back to what I call normal. I have e
mailed Dr. Kerr and hopefully he will supply some in sight. I also want to
thank members on the list who have given me names of Nerros in New Jersey that
they use and are happy with
I will contact at least one of them. In all honesty
I am somewhat afraid! I thought I have been dealing with TM in as positive way
as is possible. I just don't know if I could handle another episode especially
if It requires hospitalization.
I know all of us do not have one day that is exactly the same as the
previous one
but have any of you experienced new feelings (good or bad) that
was not a result of a relapse? If this continues I doubt if I can continue
working as the discomfort does not allow me to concentrate on my work. I can
only focus on the new feeling of burning!
Thank you for any insight you can provide.
Rob in New Jersey
Date: Mon, 31 Mar 2008 09:59:00 -0400
From: [EMAIL PROTECTED] [EMAIL PROTECTED]
To: Robert Pall [EMAIL PROTECTED], tmic-list@eskimo.com
Subject: Re: [TMIC] queston
Rob,
I was afflicted with TM in 2000. Recently I began having new symptoms and
increased pain during the Medication Valleys. I went for an MRI which showed
a cinching in at the level of my lesion (C5). The demyelination was followed by
scarring, and the scarring contracted causing the indentation around the spinal
cord. This took eight years to occure as the previous yearly MRI's didn't shown
any cinching.
Now the question is does someone operate?? I think Not!!
F
JOKE: Descartes was having coffee at a cafe in Paris. The waiter asked if
Descartes would like another refill. I think not.
And with that Descartes disappeared !!
Date: Mon, 31 Mar 2008 10:02:30 EDT
From: [EMAIL PROTECTED]
To: [EMAIL PROTECTED], tmic-list@eskimo.com
Subject: Re: [TMIC] queston
In a message dated 3/31/2008 9:13:03 AM Eastern Daylight Time, [EMAIL
PROTECTED] writes:
I know all of us do not have one day that is exactly the same as the previous
oneâ¦but have any of you experienced new feelings (good or bad) that was not a
result of a relapse?
Yes, Rob, I have experienced strange sensations and feelings and feared a
relapse or second episode, but it ended up just being some weird thing.
Sometimes it would just be for a day, sometimes it would last for months and
then fade away. You're doing well to get it checked out, and I hope that's all
it will be for you, just some strange nerve signal that will resolve in time.
Barbara H.
http://barbarah.wordpress.com/
-
Create a Home Theater Like the Pros. Watch the video on AOL Home.
Date: Mon, 31 Mar 2008 10:08:52 -0400
From: Robert Pall [EMAIL PROTECTED]
To: tmic-list@eskimo.com
Subject: [TMIC] Thank you
I just received an e-mail from Dr. Kerr. He said he would be
extremely surprised if after 10 years I am having a relapse! He did suggest and
will prescribe an MRI of the thoracic spine ( to ease my mind). This will be
the first MRI in 10 years so it can't hurt to have it done
my biggest concern
is that they find something that nothing can be done for other than more pain
meds. Dr Kerr did provide me with the name of a Neurologist in NJ whom I have
already contacted. I will let you know the results from the new Dr. as well as
the MRI as soon as I can.
Thanks to all of the members who have already responded and who will
respond. Life would be so much more difficult without this wonderful list.
Thank you all!
Rob in New Jersey
Date: Mon, 31 Mar 2008 07:42:28 -0500 (Central Daylight Time)
From: jrushton [EMAIL PROTECTED]
To: Robert Pall [EMAIL PROTECTED], tmic-list@eskimo.com
Subject: Re: [TMIC] queston
v\:* { BEHAVIOR: url (#default#vml) } v\:* { BEHAVIOR: url
(#default#vml) }FLAVOR00-NONE--- 0.00 ;
Rob, I know I've only had this 3 years and have
[TMIC] Re: tmic-digest Digest V2008 #48
Great, we look forward to seeing the program. Let us know. Congrats on being so brave and not vain about your teeth. You looked at the greater good. Bless you for all you share and do. [EMAIL PROTECTED] wrote: tmic-digest Digest Volume 2008 : Issue 48 Today's Topics: [TMIC] Re: *Mystery ER* [ Grace M. ] Re: [TMIC] Re: *Mystery ER* [ Jenna ] Re: [TMIC] prayer [ Heather Pieter Re: [TMIC] Re: *Mystery ER* [ Heather Pieter [TMIC] Fw: JOB SEARCH [ Dex Packard ] [TMIC] LATEST ON JUDE!!! [ MontzMagic ] Date: Fri, 15 Feb 2008 10:27:51 -0500 From: Grace M. [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] Re: *Mystery ER* Hi all, I just found out that I have permission to tell my friends about this. On Wednesday, I filmed a segment for the Discovery Health Channel's *Mystery ER* It will follow my initial misdiagnosis and subesequent diagnosis with Devic's NMO. it was done at the University of Pittsburgh Medical Center's Kaufmann Building, where my neuro and infusion suite are located. It went well, and was not intimidating at all. The only really negative thing is that I had to do the filming without my teeth. I recently had to have them all removed as a result of steroid induced bone loss, and do not have dentures yet. (I saw myself on the monitors and I looked terrible!) Still, it is a small price to pay for the opportunity to get the word out about Devic's NMO. On Tuesday, they will be flying to Denver to interview my son for the segment. It will air in the summertime. I'm so happy that I have had this opportunity. Grace Date: Fri, 15 Feb 2008 07:42:20 -0800 (PST) From: Jenna [EMAIL PROTECTED] To: Grace M. [EMAIL PROTECTED], tmic-list@eskimo.com Subject: Re: [TMIC] Re: *Mystery ER* Grace that is go great to hear You will have to let us know when you get the airdate! Jenna - Original Message From: Grace M. [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Friday, February 15, 2008 10:27:51 AM Subject: [TMIC] Re: *Mystery ER* Hi all, I just found out that I have permission to tell my friends about this. On Wednesday, I filmed a segment for the Discovery Health Channel's *Mystery ER* It will follow my initial misdiagnosis and subesequent diagnosis with Devic's NMO. it was done at the University of Pittsburgh Medical Center's Kaufmann Building, where my neuro and infusion suite are located. It went well, and was not intimidating at all. The only really negative thing is that I had to do the filming without my teeth. I recently had to have them all removed as a result of steroid induced bone loss, and do not have dentures yet. (I saw myself on the monitors and I looked terrible!) Still, it is a small price to pay for the opportunity to get the word out about Devic's NMO. On Tuesday, they will be flying to Denver to interview my son for the segment. It will air in the summertime. I'm so happy that I have had this opportunity. Grace - Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.Date: Fri, 15 Feb 2008 14:19:57 -0700 From: Heather Pieter [EMAIL PROTECTED] To: [EMAIL PROTECTED], tmic-list@eskimo.com Subject: Re: [TMIC] prayer Hi Cora, Your message came through. Heather in Calgary - Original Message - From: To: Sent: Friday, February 15, 2008 7:45 AM Subject: [TMIC] prayer Hey all: I hope this goes through. Have been able to receive, but not send anything for a couple of weeks, and yes, Jude is on my prayer list! Cora -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.20.5/1279 - Release Date: 2/14/2008 6:35 PM Date: Fri, 15 Feb 2008 14:36:44 -0700 From: Heather Pieter [EMAIL PROTECTED] To: Grace M. [EMAIL PROTECTED], tmic-list@eskimo.com Subject: Re: [TMIC] Re: *Mystery ER* Hello Grace, That is wonderful news. What a great way to get the word about regarding Devic's. And you are a survivor of this horrible condition. Please let everyone know when this will be aired and on what network. I live in Calgary and hopefully will be able to see it here as well. Maybe once it has been shown on TV they will allow you to have it put onto the TM/Devic's website. Luv, Heather in Calgary - Original Message - From: Grace M. To: tmic-list@eskimo.com Sent: Friday, February 15, 2008 8:27 AM Subject: [TMIC] Re: *Mystery ER* Hi all, I just found out that I have permission to tell my friends about this. On Wednesday, I filmed a segment for the Discovery Health Channel's *Mystery ER* It will follow my initial misdiagnosis and subesequent diagnosis with Devic's NMO. it was done at the University of Pittsburgh Medical Center's Kaufmann Building, where my neuro and infusion suite are located. It went well, and was not intimidating at all. The only really
[TMIC] Re: tmic-digest Digest V2008 #5
Does anyone know anything about Immunocal? Please voice your opinion pro or con. I am thinking of starting my husband on it. He has lost his desire to eat. He barely has one meal a day. He does use Ensure Plus 1 to 3 a day. He is getting so thin and weak. He is 80 diagnosed with TM about 3-4 years ago. I have lost track. He may also had a stroke. Getting some confusion about things. Dee - Original Message From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: [EMAIL PROTECTED] Sent: Saturday, January 5, 2008 2:20:34 PM Subject: tmic-digest Digest V2008 #5 tmic-digest DigestVolume 2008 : Issue 5 Today's Topics: Re: [TMIC] Angry here.[ Lynn Pouliot [EMAIL PROTECTED] ] [TMIC] Caps [ [EMAIL PROTECTED] ] FW: [TMIC] Ringing in ears[ Bob and Sue Mattis [EMAIL PROTECTED] ] [TMIC] Listen[ [EMAIL PROTECTED] ] Re: [TMIC] Listen[ Jenna [EMAIL PROTECTED] ] tmic-digest DigestVolume 2008 : Issue 5 Today's Topics: Re: [TMIC] Angry here.[ Lynn Pouliot [EMAIL PROTECTED] ] [TMIC] Caps [ [EMAIL PROTECTED] ] FW: [TMIC] Ringing in ears[ Bob and Sue Mattis [EMAIL PROTECTED] ] [TMIC] Listen[ [EMAIL PROTECTED] ] Re: [TMIC] Listen[ Jenna [EMAIL PROTECTED] ] -Inline Message Follows- Grace, it doesn't bother me at all if people write in caps or in large letters. What ever they need to do to see the words is fine with me. I have been on this list for about 4 years now and have gotten some good advice. Although I don't speak up often, I am always reading the posts. And I am so happy to have found people who are going through the same things as me. No one understands better than someone who has experienced the same thing. Thanks everyone for being there. Lynn (in RI where it was 8 degrees yesterday and today is a balmy 28) - Original Message - From: L T CHERPESKI To: Grace M. ; TMIC ; Todd Tarno Sent: Saturday, January 05, 2008 12:12 AM Subject: Re: [TMIC] Angry here. Grace, thank you for bringing the subject up. It has never bothered me that people write in caps. There are just so many of us with eye issues, what's the big deal if we make it a little easier for those to read??? In the big scheme of things, I think we all have more things to be concerned about than reading in caps. Supporting each other is far more important in my book. Linda in Eagle,ID - Original Message - From: Todd Tarno To: Grace M. ; TMIC Sent: Friday, January 04, 2008 12:39 PM Subject: Re: [TMIC] Angry here. Grace, you are so right about this. If the people that say that it is too HARD to read all caps, then just don't read and delete it. It is that easy to do. Todd in CC, TX Grace M. [EMAIL PROTECTED] wrote: Hi Guys, You know, there are several of us who need to write in caps, due to severe vision problems. Though I don't use caps, I do use large font. I have to, in order to see what I am writing. Recently, one of the long term members of the TMIC, who is also a personal friend of mine, received an extremely obnoxious email regarding this. (Complete with *language*.) You know, this little group is for the most part---wonderful. It was the very first site that I discovered at the time of my NMO diagnosis, and I have been made to feel at home here. It's like having a virtual *family*. This unnecessary haranguing, of a long standing member, has left a very bad taste in my mouth. Think of it this way: In the big scheme of things, say, ten years from now, is it really going to *matter* if someone had to use caps in order to communicate? I know that I, for one, will certainly not be thinking about something as trivial as that whenever I prepare to meet my Maker. Let's put it to rest, okaye? Grace Grace, it doesn't bother me at all if people write in caps or in large letters. What ever they need to do to see the words is fine with me. I have been on this list for about 4 years now and have gotten some good advice. Although I don't speak up often, I am always reading the posts. And I am so happy to have found people who are going through the same things as me. No one understands better than someone who has experienced the same thing. Thanks everyone for being there. Lynn (in RI where it was 8 degrees yesterday and today is a balmy 28) - Original Message - From: L T CHERPESKI To: Grace M. ; TMIC ; Todd Tarno Sent: Saturday, January 05, 2008 12:12 AM Subject: Re: [TMIC] Angry here. Grace, thank you for bringing the subject up. It has never bothered me that people write in caps. There are just so many of us with eye issues, what's the big deal if we make it a little easier for those to read??? In the big scheme of things, I think we all have more things to be concerned
[TMIC] Re: tmic-digest Digest V2007 #308
Thank You Debbie. That was a great clear way to explain the condition. We
appreciate it.
Dee for Art
[EMAIL PROTECTED] wrote:
tmic-digest Digest Volume 2007 : Issue 308
Today's Topics:
RE: [TMIC] Do we still have TM? [ Larry Throne ]
Re: [TMIC] Do we still have TM? [ Grace M. ]
Re: [TMIC] Do we still have TM? [ ]
Re: [TMIC] Do we still have TM? [ ]
[TMIC] Fw: a great idea... [ Dex Packard ]
Re: [TMIC] Do we still have TM? [ [EMAIL PROTECTED] ]
Date: Sun, 4 Nov 2007 09:28:53 -0600
From: Larry Throne [EMAIL PROTECTED]
To: Carol [EMAIL PROTECTED], tmic-list@eskimo.com
Subject: RE: [TMIC] Do we still have TM?
.hmmessage P { margin:0px; padding:0px } body.hmmessage { FONT-SIZE:
10pt; FONT-FAMILY:Tahoma }
Thanks Debbie, that is a great way to explain TM. I knew someone would help
out.
Larry in Oklahoma who is going to the farm today! Yeah!
-
From: [EMAIL PROTECTED]
To: tmic-list@eskimo.com
Subject: Fw: [TMIC] Do we still have TM?
Date: Sun, 4 Nov 2007 10:15:19 -0500
I think this is a GREAT explanation. Thank you, Debbie
Carol in Culver, IN
- Original Message - From: Deborah Nord Capen
To: Carol
Sent: Saturday, November 03, 2007 6:22 PM
Subject: Re: [TMIC] Do we still have TM?
Carol,
My-el-itis is an inflammation. You can think of other illnesses, such as
tonsil-itis, appendic-itis, to name a few. It is an inflammation, that causes
a person to become severely ill, with death as a possibility if the
inflammation is not corrected. A person with appendicitis has surgery to
remove the inflamed appendix. A person with chronic tonsillitis has their
tonsils removed to get rid of the tonsils that are causing chronic inflammation.
Obviously, since myelin is surrounding our spinal cord, we can not have it
removed to get rid of the inflammation. The doctors either use medical
treatment, such as IV steroids or plasmaphoresis, or other therapies, to reduce
the inflammation before it does too much damage to the myelin sheath.
Once the inflammation has gone, we are left with the residual damages that
the itis caused to our spinal cord. We now have myelopathy. There are
varying degrees of damage, such as permanent paralysis, mild paraplegia,
sensory deficits, motor deficits, bowel/bladder dysfunction, and in hundreds of
different ways, in thousands of people.
So, technically, we no longer have transverse myelitis - we have the residual
damage from an attack of transverse myelitis. In other words, you can say you
have transverse myelopathy. I tell people that I am living with damage caused
by an attack on my spinal cord called transverse myelitis.
Hope that helps.
Take care,
Debbie
- Original Message -
From: Carol
To: tmic-list@eskimo.com
Sent: Saturday, November 03, 2007 2:14 PM
Subject: [TMIC] Do we still have TM?
I know this question has been put out here before, but I can't find it. So I
ask again, do we still have TM or did it come, destroy and leave and we are
left with the aftermath?
Your comments please
Carol in Culver, IN
Date: Sun, 4 Nov 2007 10:32:41 -0500
From: Grace M. [EMAIL PROTECTED]
To: Larry Throne [EMAIL PROTECTED]
CC: tmic-list@eskimo.com
Subject: Re: [TMIC] Do we still have TM?
Hi Larry,
I think you're pretty close with that definition. For most, it is a one time
episode, and then dealing with all of the residual effects. There is a very
small percentage, however, who have recurrent TM. Then of course, there are
relapsing Devic's patients like me who face an indeterminable number of new
myelitis attacks. For recurrent TM and Devics, immunosuppression or chemo is
the rule.
Grace
Date: Sun, 4 Nov 2007 12:55:12 -0500
From: [EMAIL PROTECTED]
To: Carol [EMAIL PROTECTED], tmic-list@eskimo.com
Subject: Re: [TMIC] Do we still have TM?
Definition of itis
-itis: Suffix meaning inflammation. For example, colitis is literally colon
inflammation or figuratively inflammation of the colon. The ending -itis is one
of the building blocks derived from Greek (in this case) or Latin used to
construct medical terms.
Some time ago someone on the list mentioned that at the time of the onset of
Transverse Myelitis--when we had inflammation---it was Transverse Myelitis, but
now we no longer have inflammation so it is Transverse My--(something,
but I don't remember what it is) so it is still TM but not an itis. I just
cannot recall what the aftermath of having the inflammation is and I was
hoping after Carol's quesiton someone would come up with the word.
Gary in Niles, MI
- Original Message -
From: Carol
To: tmic-list@eskimo.com
Sent: Saturday, November 03, 2007 4:14 PM
Subject: [TMIC] Do we still have TM?
I know this question has been put out here before, but I
[TMIC] Re: tmic-digest Digest V2007 #296
Hi Rebecca, thank you. I am really disappointed with Kaiser's decision. They even said the new nuero who saw him for 5-10 min for 1 time felt like he had a stroke and no TM. I beg to differ. He had too many tests and saw too many specialists as opposed to his johnny come lately diagnosis. Also all I have read and this site with all of you TMers he, I am sorry to say fits in with the symptoms and complaints he has. Dee - Original Message From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: [EMAIL PROTECTED] Sent: Thursday, October 25, 2007 12:09:13 PM Subject: tmic-digest Digest V2007 #296 tmic-digest DigestVolume 2007 : Issue 296 Today's Topics: [TMIC] Re: tmic-digest Digest V2007 [ Delores Storey [EMAIL PROTECTED] ] RE: RE: [TMIC] jus wondering... [ Trudy [EMAIL PROTECTED] ] [TMIC][ Wayne Rabalais [EMAIL PROTECTED] ] Does anyone know what the rules or criteria is for a scooter for people who have difficulty ambulating. Art is 80 and has a TM diagnosis for about 3 years. We have Kaiser coverage. He was denied. Dee for Art - Original Message From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: [EMAIL PROTECTED] Sent: Wednesday, October 24, 2007 6:00:23 PM Subject: tmic-digest Digest V2007 #294 tmic-digest DigestVolume 2007 : Issue 294 Today's Topics: RE: [TMIC] jus wondering... [ Trudy [EMAIL PROTECTED] ] RE: [TMIC] jus wondering... [ Trudy [EMAIL PROTECTED] ] Re: [TMIC] jus wondering... [ Grace M. [EMAIL PROTECTED] ] RE: [TMIC] jus wondering... [ Robert Pall [EMAIL PROTECTED] ] RE: [TMIC] jus wondering... [ Trudy [EMAIL PROTECTED] ] [TMIC] immune system... [ sal r [EMAIL PROTECTED] ] I can walk in my house because I feel very secure and know where the handrails are or grab a chair. And I use a cane when I go out with friends. They always take my arm. I cannot walk in the “dark”. I must see my legs in order to put them in the right place. I must sit down to pull my sweaters over my head. At any given time I have no idea where my legs are, sometimes while lying in bed I could swear they’re moving… and I look down and there they are exactly where I left them! I did not begin walking with a walker till three months after TM hit. I am also one of those eternal “sappy” optimists. Believe! Trudy Tm 2/07/02 From: sal r [mailto:[EMAIL PROTECTED] Sent: Tuesday, October 23, 2007 8:49 PM To: tm Subject: [TMIC] jus wondering... is there anyone or know of anyone who got control of there legs back and strength but never started walking? is that possible? __ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com Absolutely, you just gotta laugh….. cause sometimes it is the best medicine! It also takes a little while for me to get the message that my foot is stuck either under the chair, getting out of the car… Or even someone standing on my foot… it takes awhile for me to get the “pain” message!! But then it comes thru…loud and clear… Trudy From: Grace M. [mailto:[EMAIL PROTECTED] Sent: Wednesday, October 24, 2007 12:06 PM To: Trudy Cc: tmic-list@eskimo.com Subject: Re: [TMIC] jus wondering... Hi Trudy, I stilll have that annoying problem of not being quite sure where my legs are. Sometimes I wake up and think that they are all bent up at odd angles, or maybe that I have one tucked up under me or something, but whenever I throw back the covers and look, they're right where I left them. Isn't it just the oddest feeling? Kind of like *My legs! My legs! Where in the world did I put my legs?* I've gotta laugh though, after all, it is just a little funny. :-) Grace Hi Trudy, I stilll have that annoying problem of not being quite sure where my legs are. Sometimes I wake up and think that they are all bent up at odd angles, or maybe that I have one tucked up under me or something, but whenever I throw back the covers and look, they're right where I left them. Isn't it just the oddest feeling? Kind of like *My legs! My legs! Where in the world did I put my legs?* I've gotta laugh though, after all, it is just a little funny. :-) Grace Trudy, If i do not look I can not tell if I am wearing shoes,socks or even underwear! I too cannot tell how my feet are under the blanket. Sometimes I try to move them and cannot because they are crossed and I had no idea! If I wake up and it is dark I will trip under anything in my waymy wife knows to keep the area between the bed and the bathroom clear. This condition certainly is a trip . Rob in New Jersey From: Grace M. [mailto:[EMAIL PROTECTED] Sent: Wednesday, October 24, 2007 12:06 PM To: Trudy Cc: tmic-list@eskimo.com Subject: Re: [TMIC] jus wondering... Hi Trudy, I stilll have that annoying problem of not being
[TMIC] Re: tmic-digest Digest V2007 #294
Does anyone know what the rules or criteria is for a scooter for people who have difficulty ambulating. Art is 80 and has a TM diagnosis for about 3 years. We have Kaiser coverage. He was denied. Dee for Art - Original Message From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: [EMAIL PROTECTED] Sent: Wednesday, October 24, 2007 6:00:23 PM Subject: tmic-digest Digest V2007 #294 tmic-digest DigestVolume 2007 : Issue 294 Today's Topics: RE: [TMIC] jus wondering... [ Trudy [EMAIL PROTECTED] ] RE: [TMIC] jus wondering... [ Trudy [EMAIL PROTECTED] ] Re: [TMIC] jus wondering... [ Grace M. [EMAIL PROTECTED] ] RE: [TMIC] jus wondering... [ Robert Pall [EMAIL PROTECTED] ] RE: [TMIC] jus wondering... [ Trudy [EMAIL PROTECTED] ] [TMIC] immune system... [ sal r [EMAIL PROTECTED] ] I can walk in my house because I feel very secure and know where the handrails are or grab a chair. And I use a cane when I go out with friends. They always take my arm. I cannot walk in the “dark”. I must see my legs in order to put them in the right place. I must sit down to pull my sweaters over my head. At any given time I have no idea where my legs are, sometimes while lying in bed I could swear they’re moving… and I look down and there they are exactly where I left them! I did not begin walking with a walker till three months after TM hit. I am also one of those eternal “sappy” optimists. Believe! Trudy Tm 2/07/02 From: sal r [mailto:[EMAIL PROTECTED] Sent: Tuesday, October 23, 2007 8:49 PM To: tm Subject: [TMIC] jus wondering... is there anyone or know of anyone who got control of there legs back and strength but never started walking? is that possible? __ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com Absolutely, you just gotta laugh….. cause sometimes it is the best medicine! It also takes a little while for me to get the message that my foot is stuck either under the chair, getting out of the car… Or even someone standing on my foot… it takes awhile for me to get the “pain” message!! But then it comes thru…loud and clear… Trudy From: Grace M. [mailto:[EMAIL PROTECTED] Sent: Wednesday, October 24, 2007 12:06 PM To: Trudy Cc: tmic-list@eskimo.com Subject: Re: [TMIC] jus wondering... Hi Trudy, I stilll have that annoying problem of not being quite sure where my legs are. Sometimes I wake up and think that they are all bent up at odd angles, or maybe that I have one tucked up under me or something, but whenever I throw back the covers and look, they're right where I left them. Isn't it just the oddest feeling? Kind of like *My legs! My legs! Where in the world did I put my legs?* I've gotta laugh though, after all, it is just a little funny. :-) Grace Hi Trudy, I stilll have that annoying problem of not being quite sure where my legs are. Sometimes I wake up and think that they are all bent up at odd angles, or maybe that I have one tucked up under me or something, but whenever I throw back the covers and look, they're right where I left them. Isn't it just the oddest feeling? Kind of like *My legs! My legs! Where in the world did I put my legs?* I've gotta laugh though, after all, it is just a little funny. :-) Grace Trudy, If i do not look I can not tell if I am wearing shoes,socks or even underwear! I too cannot tell how my feet are under the blanket. Sometimes I try to move them and cannot because they are crossed and I had no idea! If I wake up and it is dark I will trip under anything in my waymy wife knows to keep the area between the bed and the bathroom clear. This condition certainly is a trip . Rob in New Jersey From: Grace M. [mailto:[EMAIL PROTECTED] Sent: Wednesday, October 24, 2007 12:06 PM To: Trudy Cc: tmic-list@eskimo.com Subject: Re: [TMIC] jus wondering... Hi Trudy, I stilll have that annoying problem of not being quite sure where my legs are. Sometimes I wake up and think that they are all bent up at odd angles, or maybe that I have one tucked up under me or something, but whenever I throw back the covers and look, they're right where I left them. Isn't it just the oddest feeling? Kind of like *My legs! My legs! Where in the world did I put my legs?* I've gotta laugh though, after all, it is just a little funny. :-) Grace I hear you!! In the “true confessions” area …. I have been known to sit down on the “throne” and since I can’t feel the underwear… I sometimes forget I have it on…. nuf said… J Trudy From: Robert Pall [mailto:[EMAIL PROTECTED] Sent: Wednesday, October 24, 2007 12:55 PM To: Grace M.; Trudy Cc: tmic-list@eskimo.com Subject: RE: [TMIC] jus wondering... Trudy, If i do not look I can not tell if I am wearing shoes,socks or even underwear! I too cannot
[TMIC] Re: tmic-digest Digest V2007 #287
I do not take or trust flu shots. I have not had the flu in many many years. As a nurse I have given many flu shots. Thanks for the info I have passed it on to family and friends. - Original Message From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: [EMAIL PROTECTED] Sent: Friday, October 19, 2007 10:03:39 PM Subject: tmic-digest Digest V2007 #287 tmic-digest DigestVolume 2007 : Issue 287 Today's Topics: Re: [TMIC] GETTING A FLU SHOT..? THI [ Heather Pieter [EMAIL PROTECTED] ] Re: [TMIC] GETTING A FLU SHOT..? THI [ Grace M. [EMAIL PROTECTED] ] Re: [TMIC] steroids [ Grace M. [EMAIL PROTECTED] ] [TMIC] weird sensation[ sal r [EMAIL PROTECTED] ] [TMIC] balance[ sal r [EMAIL PROTECTED] ] [TMIC] balance[ Grace M. [EMAIL PROTECTED] ] A long time prior to TM I decided to get the flu shot. That winter I was so sick with the flu that I ended up off work for 2 weeks. Thinking it was a one time thing I again took the flu shot the following winter. Same thing happened to me. I ended up again off work sick for 2 weeks that winter. That was the last time I had the flu shot. I think that each of us has our own unique chemical make-up (hence the many drug cocktails we take for TM and most of us at different combinations) and that sometimes influences how we tolerate the shots. Just my 2 cents worth. :) Heather in Calgary - Original Message - From: Robert Pall To: Carol ; Trudy ; [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Friday, October 19, 2007 5:48 AM Subject: RE: [TMIC] GETTING A FLU SHOT..? THIS STUFF PARALYZED ME...! I certainly understand many peoples intrepidation on getting a flu shot. Many people may believe a flu shot caused the outbreak of TM, although I believe this has never been proven. I also believe none of us with TM are totally certain what triggered it...some of us just guessI suppose it is very important for some to know the cause...as if that will help the condition. I have had TM for more than 10 years and have received the flu shot every year with never any problems. I have informed Dr Kerr of this fact and he has never once discouraged me doing it. Considering that for most of us TM is a one time occurance then it would seem logical that taking a flu shot will not cause a second occurance. For those of us getting older or with other serious health problems I believe the benefits of the flu shot far outweigh the consequences. Just one mans opinion, each of us in coordination with our Doctors should make their own choice. I am just one vote in favor of the shots! Rob in New Jersey PS: Because I just turned 60 I also had the Pneumonia shot this year! From: Carol [mailto:[EMAIL PROTECTED] Sent: Thursday, October 18, 2007 9:07 PM To: Trudy ; [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] GETTING A FLU SHOT..? THIS STUFF PARALYZED ME...! My daughter is a nurse and her husband is an MD and they have chosen not to get their 2 children, ages 4 mos and 2 1/2 yrs, the flu shot. They have received all their other shots. Carol in Culver, IN - Original Message - From: Trudy To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Thursday, October 18, 2007 4:49 PM Subject: RE: [TMIC] GETTING A FLU SHOT..? THIS STUFF PARALYZED ME...! This is scary! do you know where we can find the study or more info on this. My daughter just had her first child and she is debating about all the shots he is required to have… Thanks for the update Trudy From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Thursday, October 18, 2007 4:03 PM To: tmic-list@eskimo.com Subject: [TMIC] GETTING A FLU SHOT..? THIS STUFF PARALYZED ME...! Autism or flu…choose your poison If you haven't yet heard of Thimerosal, hang onto your mittens…it's a word likely to creep into more and more health headlines in the coming months and years. Thimerosal is used as a preservative in vaccines—including but not limited to most flu vaccines. And although most of the preservatives used in the products we put into our bodies are unhealthy -- to simply call Thimerosal unhealthy would be an egregious understatement. You see, Thimerosal is a little less than 50 percent mercury. The same mercury that the Department of Defense classifies as a hazardous material that could cause death if swallowed, inhaled or absorbed through the skin. Mercury poisoning has been linked to cardiovascular disease, autism, seizures, mental retardation, dyslexia and several other neurological disorders. And it's been banned as a vaccine preservative in several Asian and European countries for over 20 years. So, why am I tell you all of this? Because a federally funded study recently came to the conclusion that Thimerosal does not raise the risk of neurological problems in children. An interesting conclusion given that some vaccines (among
