[TMIC] Hi!!!

[Shirley Gurnell]

http://www.ou-zaharistoyanov.com/duqiw/vwuiqnzcjkbgjpr.cr  


 



 
4/9/2013 12:37:51 PM



 

 
  

 













4/9/2013 12:37:51 PM
   s.gurnell

RE: [TMIC] Hi group.

[pjv1234]

Hi Dennis
I think I remember your name from a few years ago when tmic was a much 
busier web site.  I was tested for West Nile Virus when I was diagnosed 
with TM, however, I am one of those with no idea how or why I developed 
it.


I'm fortunate to be able to walk with a cane and returned home after 
eleven days in the hospital.  I can't imagine how discouraging and 
depressing it would be living in nursing homes since TM.  I'm wondering 
where you live and if you have ever met another TMer.


The first time I met Jude was when she was in a nursing home and it was 
a good visit for both of us.


I just reread you short paragraph and it reminded me of something i've 
noticed.  It seems the longer we have TM the less we talk about it. 
I've had it for 9 years and can remember when I was willing to share 
every detail.  Now, like you the details are a thing of the past.


Do you live in the U.S.?

Patti - Michigan

On Thu, Feb 14, 2013 at 1:54 AM, dennis rabalais wrote:

 Hi group. My name is Dennis Rabalais. I am 39 years old and I have TM. 
I was paralyzed at 29 years old. It started out with West Nile virus and 
inturn started the onset of TM. I 've lived in nursing homes since then. 
It's been very troubling, something I cannot understand why it happened, 
or even how. I've gone through major depression and still going through 
it. Well, that's my story. Nice to meet all y'all. God bless and have a 
great night!

Sent from Yahoo! Mail on Android

Re: [TMIC] Hi group.

[Barbara H.]

Hi, Dennis, and welcome. I'm so sorry you ended up paralyzed and in a
nursing home. Depression is understandable. I hope we can be of help,
either with answers to questions or just moral support.

Barbara H.
http://barbarah.wordpress.com

On Thu, Feb 14, 2013 at 1:54 AM, dennis rabalais <
dennis_rabalais20...@yahoo.com> wrote:

> Hi group. My name is Dennis Rabalais. I am 39 years old and I have TM. I
> was paralyzed at 29 years old. It started out with West Nile virus and
> inturn started the onset of TM. I 've lived in nursing homes since then.
> It's been very troubling, something I cannot understand why it happened, or
> even how. I've gone through major depression and still going through it.
> Well, that's my story. Nice to meet all y'all. God bless and have a great
> night!
> Sent from Yahoo! Mail on Android
>

Re: [TMIC] Hi group.

[Richard Ashford]

Dennis, Welcome to tmic, you'll discover many wonderful & caring & 
knowledegable people here. Did you recieve an innocultion for the west vile 
virus. If so how long was it before they determined that you indeed now have 
TM. Rick in Tn.

 


 From: dennis rabalais 
To: LIST  
Sent: Thursday, February 14, 2013 12:54 AM
Subject: [TMIC] Hi group.
   
Hi group. My name is Dennis Rabalais. I am 39 years old and I have TM. I was 
paralyzed at 29 years old. It started out with West Nile virus and inturn 
started the onset of TM. I 've lived in nursing homes since then. It's been 
very troubling, something I cannot understand why it happened, or even how. 
I've gone through major depression and still going through it. Well, that's my 
story. Nice to meet all y'all. God bless and have a great night!
Sent from Yahoo! Mail on Android 

Re: [TMIC] Hi group.

[rn11...@yahoo.com]

Hi Dennis,
 Welcome to the group no one wants to join. If you have any questions, just ask.
This is a great bunch of people of all ages.
            Cheryl



 From: dennis rabalais 
To: LIST  
Sent: Thursday, February 14, 2013 1:54 AM
Subject: [TMIC] Hi group.
 

Hi group. My name is Dennis Rabalais. I am 39 years old and I have TM. I was 
paralyzed at 29 years old. It started out with West Nile virus and inturn 
started the onset of TM. I 've lived in nursing homes since then. It's been 
very troubling, something I cannot understand why it happened, or even how. 
I've gone through major depression and still going through it. Well, that's my 
story. Nice to meet all y'all. God bless and have a great night!
Sent from Yahoo! Mail on Android 

Re: [TMIC] Hi group.

[john snodgrass]

Howdy Dennis




 From: dennis rabalais 
To: LIST  
Sent: Thursday, February 14, 2013 1:54 AM
Subject: [TMIC] Hi group.
 

Hi group. My name is Dennis Rabalais. I am 39 years old and I have TM. I was 
paralyzed at 29 years old. It started out with West Nile virus and inturn 
started the onset of TM. I 've lived in nursing homes since then. It's been 
very troubling, something I cannot understand why it happened, or even how. 
I've gone through major depression and still going through it. Well, that's my 
story. Nice to meet all y'all. God bless and have a great night!
Sent from Yahoo! Mail on Android 

[TMIC] Hi group.

[dennis rabalais]

Hi group. My name is Dennis Rabalais. I am 39 years old and I have TM. I was 
paralyzed at 29 years old. It started out with West Nile virus and inturn 
started the onset of TM. I 've lived in nursing homes since then. It's been 
very troubling, something I cannot understand why it happened, or even how. 
I've gone through major depression and still going through it. Well, that's my 
story. Nice to meet all y'all. God bless and have a great night!
Sent from Yahoo! Mail on Android

Re: [TMIC] HI

[john snodgrass]

what they said!

 


 From: Janice Nichols 
To: celr...@aol.com; TMIC-LIST@eskimo.com 
Sent: Wednesday, November 21, 2012 4:48 PM
Subject: Re: [TMIC] HI
  

and Happy Thanksgiving to everyone of my TM 
friends 
Janice 

From: celr...@aol.com  
Sent: Wednesday, November 21, 2012 8:38 AM 
To: TMIC-LIST@eskimo.com  
Subject: [TMIC] HI 
 HAPPY THANKSGIVING TO 
EVERYONE. 

Re: [TMIC] HI

[Janice Nichols]

and Happy Thanksgiving to everyone of my TM friends
Janice

From: celr...@aol.com 
Sent: Wednesday, November 21, 2012 8:38 AM
To: TMIC-LIST@eskimo.com 
Subject: [TMIC] HI

HAPPY THANKSGIVING TO EVERYONE.

RE: [TMIC] HI

[Linda Cherpeski]

THANK YOU ~ HAPPY THANKSGIVING TO EVERYONE!! From: 
gbthomas8...@sbcglobal.net
To: celr...@aol.com; TMIC-LIST@eskimo.com
Subject: Re: [TMIC] HI
Date: Wed, 21 Nov 2012 11:28:49 -0500








Same to you and to everyone on our list.
 
Gary  Niles, MI

  - Original Message - 
  From: 
  celr...@aol.com 
  
  To: TMIC-LIST@eskimo.com 
  Sent: Wednesday, November 21, 2012 9:38 
  AM
  Subject: [TMIC] HI
  

  HAPPY THANKSGIVING TO 
EVERYONE. 

Re: [TMIC] HI

[Gary Thomas]

Same to you and to everyone on our list.

Gary  Niles, MI
  - Original Message - 
  From: celr...@aol.com 
  To: TMIC-LIST@eskimo.com 
  Sent: Wednesday, November 21, 2012 9:38 AM
  Subject: [TMIC] HI


  HAPPY THANKSGIVING TO EVERYONE.

Re: [TMIC] HI

[Gary Thomas]

  - Original Message - 
  From: celr...@aol.com 
  To: TMIC-LIST@eskimo.com 
  Sent: Wednesday, November 21, 2012 9:38 AM
  Subject: [TMIC] HI


  HAPPY THANKSGIVING TO EVERYONE.

[TMIC] HI

[Celrods]

HAPPY THANKSGIVING TO  EVERYONE.

Re: [TMIC] hi

[john snodgrass]

lol,i cant even find my surprised look anymore... 




 From: James Berg 
To: Jan Hargrove  
Cc: transverse myelitis  
Sent: Wednesday, April 25, 2012 4:46 PM
Subject: Re: [TMIC] hi
 

I'd be astounded if ths wasn't a scam


On Sun, Apr 22, 2012 at 3:26 AM, Jan Hargrove  wrote:


>wow can you look at this http://www.nbnews15.net/biz/?read=7741768
>
>
>
>~*Advertisement
>
>

Re: [TMIC] hi

[James Berg]

I'd be astounded if ths wasn't a scam

On Sun, Apr 22, 2012 at 3:26 AM, Jan Hargrove  wrote:

>
> wow can you look at this http://www.nbnews15.net/biz/?read=7741768
>
>
>
> ~*Advertisement
>
>

[TMIC] hi

[Jan Hargrove]

wow can you look at this http://www.nbnews15.net/biz/?read=7741768 



~*Advertisement

Re: [TMIC] hi

[Susan Kleinz]

Watergate Salad?

On Nov 28, 2011, at 9:33 AM, celr...@aol.com wrote:

I am glad everyone is doing ok.  It is about time something started  
working for you Dalton.  I had a good Thanksgiving-ate t much,  
but my sister is a very good cook.  I made deviled eggs and pumpkin  
pie.  Suzi  deep fried a chicken and put some kind of hot sauce on  
it (her boys like spicy food) baked a turkey, cooked a ham, mashed  
potatoes, yams, green bean casserole, corn, cornbread dressing,  
gravy, cranberry sauce, ambrosia, watergate salad, rolls, coconut  
pies, brownies whew I think this was all.  As I said she is a COOK  
and likes to cook.  She does too much but we love it and her.  It  
is her therapy and we let her indulge.



Jane/Splendora TxCold today

[TMIC] hi

[Celrods]

I am glad everyone is doing ok.  It is about time something started  
working for you Dalton.  I had a good Thanksgiving-ate t much, but my  
sister 
is a very good cook.  I made deviled eggs and pumpkin pie.   Suzi  deep 
fried a chicken and put some kind of hot sauce on it (her boys  like spicy 
food) 
baked a turkey, cooked a ham, mashed potatoes, yams, green bean  casserole, 
corn, cornbread dressing, gravy, cranberry sauce, ambrosia, watergate  
salad, rolls, coconut pies, brownies whew I think this was all.  As I said  she 
is a COOK and likes to cook.  She does too much but we love it and  her.  It 
is her therapy and we let her indulge. 
 
 
Jane/Splendora TxCold today

[TMIC] HI

[Celrods]

I AM SO GLAD TO SEE ALL YOU BACK HERE ON TMIC.   I HAVE MISSED  SEEING YOUR 
POSTS.
 
SO GLAD TO HAVE NEWS ABOUT JUDE.
 
JANE/SPLENDORA TX

Re: [TMIC] Hi from Carol

[Akua]

Wishing you many joy filled more, Carol.
thank you for sharing and caring!
Akua


--

Re: [TMIC] Hi from Carol

[L T CHERPESKI]

Thank you for the continued thoughts and prayers, Carol.  God Bless.  Linda




 Original Message - 
  From: Pieter and Heather<mailto:pieterheat...@shaw.ca> 
  To: cjb...@aol.com<mailto:cjb...@aol.com> ; 
tmic-list@eskimo.com<mailto:tmic-list@eskimo.com> 
  Sent: Saturday, June 05, 2010 7:42 PM
  Subject: Re: [TMIC] Hi from Carol


  God Bless you too Carol.
  {Hugs}
  Heather in Calgary
- Original Message - 
From: cjb...@aol.com<mailto:cjb...@aol.com> 
To: tmic-list@eskimo.com<mailto:tmic-list@eskimo.com> 
Sent: Saturday, June 05, 2010 5:06 PM
Subject: [TMIC] Hi from Carol


Yesterday was my 67th birthday and today it was a year ago since Jim had 
his stroke. As I was pouring over all the photos I took of Jim during his onset 
of TM and the fight to conquer it,it made me wonder if I had shared that with 
you. Not all the pics of course but just the fact of doing it.It was such an 
inspiration to JIm to be able to see via photos and video clips just how much 
progress he was making. Sometimes you don't feel like you are getting anywhere, 
but when you can look at the proof it is a real incentive. I also took pictures 
almost everyday during his last hospitalisation , hoping that he would be able 
to see his progress there. As you all know, it didn't turn out the way I 
wanted, But those pictures mean the world to me. Keep up the fight and I will 
keep up the prayers and please think about taking some pictures. GOD BLESS, 
carol

Re: [TMIC] Hi from Carol

[Pieter and Heather]

God Bless you too Carol.
{Hugs}
Heather in Calgary
  - Original Message - 
  From: cjb...@aol.com 
  To: tmic-list@eskimo.com 
  Sent: Saturday, June 05, 2010 5:06 PM
  Subject: [TMIC] Hi from Carol


  Yesterday was my 67th birthday and today it was a year ago since Jim had his 
stroke. As I was pouring over all the photos I took of Jim during his onset of 
TM and the fight to conquer it,it made me wonder if I had shared that with you. 
Not all the pics of course but just the fact of doing it.It was such an 
inspiration to JIm to be able to see via photos and video clips just how much 
progress he was making. Sometimes you don't feel like you are getting anywhere, 
but when you can look at the proof it is a real incentive. I also took pictures 
almost everyday during his last hospitalisation , hoping that he would be able 
to see his progress there. As you all know, it didn't turn out the way I 
wanted, But those pictures mean the world to me. Keep up the fight and I will 
keep up the prayers and please think about taking some pictures. GOD BLESS, 
carol

[TMIC] Hi from Carol

[CJBJWB]

Yesterday was my 67th birthday and today it was a year ago since Jim had  
his stroke. As I was pouring over all the photos I took of Jim during his 
onset  of TM and the fight to conquer it,it made me wonder if I had shared that 
with  you. Not all the pics of course but just the fact of doing it.It was 
such an  inspiration to JIm to be able to see via photos and video clips 
just how much  progress he was making. Sometimes you don't feel like you are 
getting anywhere,  but when you can look at the proof it is a real incentive. 
I also took pictures  almost everyday during his last hospitalisation , 
hoping that he would be able  to see his progress there. As you all know, it 
didn't turn out the way I wanted,  But those pictures mean the world to me. 
Keep up the fight and I will keep up  the prayers and please think about taking 
some pictures. GOD BLESS,  carol

Re: [TMIC] Hi, just checking in from our eating vacation

[Barbara Alma]

Hi Alton,

Replying about Lamberts Cafe: The roll throwing is just one of the things that 
they are famous for.  When you order your meal it comes with sides, like 
vegies, etc.  You pick those and then they come around with large bowls of 
fried okra, fried potatoes, black-eyed peas, macaroni and tomatoes, maybe 
something else that I've forgotten.  Also, they don't bring bread to the table, 
they have another person with a cart full of muffin tins that walks around the 
restaurant throwing rolls to anyone who wants them.  People say "over here" and 
the person throws them a roll, it's a fun place.  It's a sit down restaurant, 
but it's also an all you can eat place, where people can consume huge amounts 
of food.  If you didn't get enough of your entree' they will bring you more, 
which is so hard to believe because the portions are large.  My husband saw it 
on TV, thinks most likely on Man vs. Food, or the Favorite Places to Pigout or 
something like that.  We both ordered fried chicken, you can have which ever 
pieces you want, we took the breasts and got 2 huge ones and a baked potato and 
another side.  Well, by the time I had mine all mixed in with the fixings they 
came around with the pan fried potatoes and my baked potato came home with me, 
as well as a chicken breast and a half.  Most of my dinner consisted of the 
pass arounds, but I was very proud of myself - I only ate one roll, and it was 
fantastic. 

Hugs, Barbara A in Auburn CA



-Original Message-
From: Alton Ryder 
To: Barbara Alma 
Sent: Sat, Apr 17, 2010 4:35 am
Subject: Re: [TMIC] Hi, just checking in from our eating vacation


Surely you will tell people what this roll throwing is all about. Is it related 
to how they make rolls, e.g., beaten biscuits.


Alton


On Apr 17, 2010, at 12:49 AM, Barbara Alma wrote


Lamberts Cafe, where they throw the rolls.  Lots of fun

[TMIC] Hi, just checking in from our eating vacation

[Barbara Alma]

Hello TMIC group,

We were part of a wonderful wedding of our god-daughter in Denver.  She has 
married a very nice man.  It looks like they have a very good life ahead of 
them and we are so happy for them.  They both love to travel and he is an Air 
Force pilot, so they will travel to a new base every few years, which they are 
looking forward to.  So, this  means that we'll get to visit them in other 
places too, yeah!!  While in Denver we went to the Jack n Grill where they 
serve a 7 lb burrito, so we shared on between 4 people.  We didn't even eat 
half of it, and all ate for $15.  It was really good, but can you believe that 
there are people that eat the whole thing?  They do, and get their photo on the 
wall.  About 3 are ordered each day to try and about only one a month is 
consumed by a single person.

I want to thank Janice and her daughter for her referrals for our time in 
Kansas City.  We had a great time at the Steamship Arabia (www.1856.com) in 
case anyone is interested.  It was a totally amazing experience for us to see 
this, as Pete had seen part of a program on TV about digging up this ship in 
Missouri.  We watched a short video and then one of the 5 men who are 
responsible for this fabulous museum and all of the artifacts, etc came into 
the room and gave a short talk and took some questions.  It was a thrill to 
meet him and talk to him about this, it was like going back in time for us and 
we could almost imagine what it would have been like to find some of the 
treasures that they did.  They continue to restore items and add to the museum 
and are looking for a larger space as they won't have enough room soon.  I 
highly recommend this to anyone who has a chance to go and very accessible.

We also went to the Liberty WWI Memorial Museum and it was very interesting.  I 
was a terrible history student, so I learned a lot.  Pete always gets upset 
that I don't know a lot of my history, but I learn some here and there.  Then 
yesterday we went to the Harry S. Truman Library and Museum on our way to 
Branson.  Also, so interesting, as he was President when I was born and I knew 
very little about him as well.  But, I forgot the BBQ.  We had to have some BBQ 
in Kansas City, yummy.

We are now in Branson, MO.  Having a good time, and eating in fun restaurants.  
Tonight we went to Lamberts Cafe, where they throw the rolls.  Lots of fun and 
such good food.  We've heard of it on the Food Channel.  As you can see, we are 
have a food itinerary, as well an entertainment and enrichment itinerary, lol.  
We'll see several shows while in Branson, then onto Indianapolis to visit our 
friends.  But, have a short stop in St. Louis for some BBQ on the way, lol.

I'll be checking in soon, all is well, I'm holding up well, and we are taking 
it slowly.  I hope everyone is doing well also.

Hugs to all from Barbara (from Auburn CA, but presently a nomad) 

Re: [TMIC] Hi Everyone

[Alle111]

Hello Janice.
Welcome, I just read your post. I am Ella in Ohio, I'm 49 and  got TM in 
2000. Have any questions just ask. Have a nice  day.Ella
**Feeling the pinch at the grocery store?  Make meals for Under 
$10. (http://food.aol.com/frugal-feasts?ncid=emlcntusfood0002)

RE: [TMIC] Hi Everyone

[Patricia Cooley]

HI JANICE.   WELCOME TO THE SITE.  I HAVE ONLY BEEN ON FOR ABOUT 8 MONTHS
AND A VICTIM OF TM FOR ABOUT 9 MONTHS.  YOU WILL FIND EVERYONE IS SO VERY
NICE AND FRIENDLY.  HOPE TO HEAR FROM YOU IN THE FUTURE.

 

PATTI FROM WISCONSIN

 

From: Janice [mailto:jan...@centurytel.net] 
Sent: Tuesday, March 17, 2009 10:43 AM
To: celr...@aol.com; TMIC-LIST@eskimo.com
Subject: Re: [TMIC] Hi Everyone

 

Hi!I am Janice from Missouri.Been a 62- year old TM victim for 2
years and just venturing out on the computer to meet others with TM.
Hope you are doing well.

- Original Message - 

From: celr...@aol.com 

To: TMIC-LIST@eskimo.com 

Sent: Tuesday, March 17, 2009 8:27 AM

Subject: [TMIC] Hi Everyone

 

How is Jude doing.  I have'nt seen any postings for some reason or other.  I
had to subscribe again. I have been concerned about all.Jane in
Splendora Tx

 


  _  


Feeling the pinch at the grocery store? Make
<http://food.aol.com/frugal-feasts?ncid=emlcntusfood0001>  dinner for
$10 or less.

Re: [TMIC] Hi Everyone

[CANDIS KALLEY]

Hi Janice - Candy K here in Naples, FL - 60 years young .  First episode of TM 
hit, age 57, on 2/5/06, bra line down, then 2nd on 2/30/06, neck down.  I had 
PLEX, Plasma Exchange, treatments on 2nd round.  I am a "walking wounded" 
- walk with cane or walker short distances but need electric cart or chair for 
distances longer than 20 feet.  I do drive but very short distances - longer 
than 30 miles and it feels like 3000+ -I get all stiff and any movement cause 
severe pain upon getting out of vehicle. 

Terrible back pain controlled somewhat with Cymbalta 60 mg. (helps despression 
and nerve pain), Zanaflex (Tizanidine) 12mg daily - 4mg in AM and 8mg in PM, 
Tramadol HCL 50mg and a TENS machine sometimes constantly.   

I have constant tingling in L arm/hand which I have little or no feeling in.  I 
also have spasms daily in L arm/hand and occasionally in R.  The spasms occur 
whenever I use my hands too much - typing, cutting food, etc.  I do have more 
strength in R hand approx. 60% normal while the L has approx. 30% normal.  

I also have little or no feeling in either leg/foot.  My R leg/foot is the 
weakest which I can't raise past 3" or so and it drags while walking but I have 
spotty feeling in R foot.  The worst spasms occur in the R leg at any time.  I 
have no feeling in L leg/foot but it is the strongest and does 
spasms occasionally especially if I'm tired or stressed.  I can raise the L leg 
straight out/up most of the time 

Besides the terrible back pain, my other chief complaint is fatigue which I 
haven't found anything to counter-act.  I do take  Amantadine 100mg 2X daily.  
I also take Super Guarana 1200mg 2X daily and drink sports drinks daily.  All 
that helps but there are days when I do sleep 20+ hours especially after any 
strenious activity.  Any strenious activity may take me 2 days to a week to 
recover.  This includes going to Dr. visits and grocery shopping.  

I can't sit in a regular chair more than 15 minutes then I must get my legs up 
either in my recliner or laying on sofa or my bed.  It has taken me awhile to 
even write this.  I've found that the meds, TM, and age is really playing a 
number on my memory and mind.  Thank GOD for spell check. 

For my entertainment, I have cable.  I also have my maltese, Zeus, plus I was 
lucky enough to rescue a parrot 2 weeks ago.  He was in a home that had 2 
little girls and he had a terrible fear of hands and would bite something 
fierce!  In the past 2 weeks, I've got him to come and land on my hand and in 
the past 3 days he really loves to have his head rubbed and kissed.  He does 
talk but only when he wants to.  He has increased his vocabulary but he still 
prefers to squawk mainly in the morning which I think is because he hears the 
birds outside. 

I do tend to carry on - sorry.  This is really a great group.  Any and all 
questions are answered - any one of us has been there at one time or another. 



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: "Janice"  
To: celr...@aol.com, TMIC-LIST@eskimo.com 
Sent: Tuesday, March 17, 2009 11:42:47 AM GMT -05:00 US/Canada Eastern 
Subject: Re: [TMIC] Hi Everyone 


Hi!    I am Janice from Missouri.    Been a 62- year old TM victim for 2 years 
and just venturing out on the computer to meet others with TM. Hope you are 
doing well. 


- Original Message - 
From: celr...@aol.com 
To: TMIC-LIST@eskimo.com 
Sent: Tuesday, March 17, 2009 8:27 AM 
Subject: [TMIC] Hi Everyone 


How is Jude doing.  I have'nt seen any postings for some reason or other.  I 
had to subscribe again. I have been concerned about all.    Jane in Splendora 
Tx 


Feeling the pinch at the grocery store? Make dinner for $10 or less .

Re: [TMIC] Hi Everyone

[Trudy Ogilvie]

Hi Janice!  Welcome to the group...   I am Trudy ... 62yrs. young!  TM hit
me in the middle of the "night from hell"...  2002. MS arrived in 2008...
 You will find a great group of people here and don't hesitate to ask any
questions..  We've all been there.  I live in Virginia. Tho I am a born and
raised New Yorker! :)  Again..  Welcome!Trudy

On Tue, Mar 17, 2009 at 11:42 AM, Janice  wrote:

>  Hi!I am Janice from Missouri.Been a 62- year old TM victim for 2
> years and just venturing out on the computer to meet others with TM.
> Hope you are doing well.
>
> - Original Message -
> *From:* celr...@aol.com
> *To:* TMIC-LIST@eskimo.com
> *Sent:* Tuesday, March 17, 2009 8:27 AM
> *Subject:* [TMIC] Hi Everyone
>
> How is Jude doing.  I have'nt seen any postings for some reason or other.
> I had to subscribe again. I have been concerned about all.Jane in
> Splendora Tx
>
> --
> Feeling the pinch at the grocery store? Make dinner for $10 or 
> less<http://food.aol.com/frugal-feasts?ncid=emlcntusfood0001>
> .
>
>

RE: [TMIC] Hi Everyone

[Tami Streeter]

Hi Janice.  Glad to meet you. I am Tami from Arkansas.  I am 42 and have had
TM for 1 ½ years.

 

 

  _  

From: Janice [mailto:jan...@centurytel.net] 
Sent: Tuesday, March 17, 2009 10:43 AM
To: celr...@aol.com; TMIC-LIST@eskimo.com
Subject: Re: [TMIC] Hi Everyone

 

Hi!I am Janice from Missouri.Been a 62- year old TM victim for 2
years and just venturing out on the computer to meet others with TM.
Hope you are doing well.

- Original Message - 

From: celr...@aol.com 

To: TMIC-LIST@eskimo.com 

Sent: Tuesday, March 17, 2009 8:27 AM

Subject: [TMIC] Hi Everyone

 

How is Jude doing.  I have'nt seen any postings for some reason or other.  I
had to subscribe again. I have been concerned about all.Jane in
Splendora Tx

 


  _  


Feeling the pinch at the grocery store? Make dinner
<http://food.aol.com/frugal-feasts?ncid=emlcntusfood0001>  for $10 or
less.

RE: [TMIC] Hi Everyone

[Butcher, Bernard G (NY80)]

Welcome to the group! I am Barney in NY, Long Island, 56. Tm since 2002,
MS since 2008.

I thought TM & MS happened to only younger people (?)

 

Barney



From: Janice [mailto:jan...@centurytel.net] 
Sent: Tuesday, March 17, 2009 11:43 AM
To: celr...@aol.com; TMIC-LIST@eskimo.com
Subject: Re: [TMIC] Hi Everyone

 

Hi!I am Janice from Missouri.Been a 62- year old TM victim for 2
years and just venturing out on the computer to meet others with TM.
Hope you are doing well.

- Original Message - 

From: celr...@aol.com 

To: TMIC-LIST@eskimo.com 

Sent: Tuesday, March 17, 2009 8:27 AM

Subject: [TMIC] Hi Everyone

 

How is Jude doing.  I have'nt seen any postings for some reason
or other.  I had to subscribe again. I have been concerned about all.
Jane in Splendora Tx

 





Feeling the pinch at the grocery store? Make dinner for $10 or
less <http://food.aol.com/frugal-feasts?ncid=emlcntusfood0001> .

Re: [TMIC] Hi Everyone

[Janice]

Hi!I am Janice from Missouri.Been a 62- year old TM victim for 2 years 
and just venturing out on the computer to meet others with TM. Hope you are 
doing well.
  - Original Message - 
  From: celr...@aol.com 
  To: TMIC-LIST@eskimo.com 
  Sent: Tuesday, March 17, 2009 8:27 AM
  Subject: [TMIC] Hi Everyone


  How is Jude doing.  I have'nt seen any postings for some reason or other.  I 
had to subscribe again. I have been concerned about all.Jane in Splendora Tx


--
  Feeling the pinch at the grocery store? Make dinner for $10 or less.

[TMIC] Hi Everyone

[Celrods]

How is Jude doing.  I have'nt seen any postings for some reason or  other.  I 
had to subscribe again. I have been concerned about  all.Jane in 
Splendora Tx
**Feeling the pinch at the grocery store?  Make dinner for $10 or 
less. (http://food.aol.com/frugal-feasts?ncid=emlcntusfood0001)

[TMIC] hi

[ACAROE]

just a test
**Worried about job security? Check out the 5 safest jobs in a 
recession. 
(http://jobs.aol.com/gallery/growing-job-industries?ncid=emlcntuscare0002)

Re: [TMIC] hi all

[CANDIS KALLEY]

Kevin, 

I too am surprised at your doctors reluctance to give you pain meds!  Sometimes 
I wish doctors could experience the pain that we go through just to get up 
everyday. 

I can sympathize with the hand pain because I go through hand pain anytime that 
I use my hands too much.  I also know what stress can do to elevate TM symptoms 
- been there, done that, got the Tshirt to prove it! 

Please don't give up!  There has to be a doctor who knows about TM near you.  
Have you asked your doctor to consult with Dr. Kerr, r any of his associates, 
at John Hopkins Hospital?  If not, ask him to call - Fax - 410.502.6736 or 
Phone - 410.614.1522.  Maybe if he had someone who really knew about TM he/she 
might be more understanding.  Pain is my chief complaint about TM.  I can live 
with the dragging of my foot, my hands not working from time to time, but the 
pain is really something that some days I wish I could do away with but I only 
know of one way, and I really want to be around for a few more days, weeks, 
years! 

Keep trying  there are good doctors out there! 


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: "L T CHERPESKI" <[EMAIL PROTECTED]> 
To: tmic-list@eskimo.com, "Kevin Wolfthal" <[EMAIL PROTECTED]> 
Sent: Sunday, December 7, 2008 2:24:06 AM (GMT-0500) America/New_York 
Subject: Re: [TMIC] hi all 




Hi Kevin, 

I'm so glad you wrote.  We need you to stay in contact so that we know how 
you're doing.  I'm very sorry to hear about your mom.  I can't even imagine 
what you went through.  I'm glad that she is doing better.  And what's up with 
your neurologist???  Please don't give up on getting some pain meds.  I don't 
understand this.  Do you live in an area where there are many doctors or are 
you in a smaller community.  There's just no excuse for this and it makes me 
mad (can you tell?)  Please don't give up, Kevin.  There is help available.  
Keep in touch 

Hugs 
Linda 


- Original Message - 
From: Kevin Wolfthal 
To: tmic-list@eskimo.com 
Sent: Saturday, December 06, 2008 9:09 PM 
Subject: [TMIC] hi all 



Dear Friends, 

Sorry I haven’t been on lately. My hands have gotten very bad with 
numbness and pain. Last month my Mom collapsed in front of me and I had 
to give her CPR. She revived and spent a month in a nursing home and is 
home now doing better. The trauma of all this has affected my health 
negatively. I am just thankful I was able to get to her in time. This 
has been a fear of mine for a long time. 

I have given up on getting help for myself. I’ve had so many negative 
experiences with doctors..the neurologists refuse to give me anything 
for pain. They want me to have a nerve biopsy, which I have read will 
cause numbness in that area, and I don’t need any more numbness. 

I asked Senator Lieberman if he could get some funding to the NIH for TM 
research and he promised me he would try. He has helped me personally 
with other issues, so we’ll see. 

Wishing you all the best. 

Kevin 

Re: [TMIC] hi all

[L T CHERPESKI]

Hi Kevin,

I'm so glad you wrote.  We need you to stay in contact so that we know how 
you're doing.  I'm very sorry to hear about your mom.  I can't even imagine 
what you went through.  I'm glad that she is doing better.  And what's up with 
your neurologist???  Please don't give up on getting some pain meds.  I don't 
understand this.  Do you live in an area where there are many doctors or are 
you in a smaller community.  There's just no excuse for this and it makes me 
mad (can you tell?)  Please don't give up, Kevin.  There is help available.  
Keep in touch

Hugs
Linda
  - Original Message - 
  From: Kevin Wolfthal<mailto:[EMAIL PROTECTED]> 
  To: tmic-list@eskimo.com<mailto:tmic-list@eskimo.com> 
  Sent: Saturday, December 06, 2008 9:09 PM
  Subject: [TMIC] hi all




  Dear Friends,

  Sorry I haven’t been on lately. My hands have gotten very bad with 
  numbness and pain. Last month my Mom collapsed in front of me and I had 
  to give her CPR. She revived and spent a month in a nursing home and is 
  home now doing better. The trauma of all this has affected my health 
  negatively. I am just thankful I was able to get to her in time. This 
  has been a fear of mine for a long time.

  I have given up on getting help for myself. I’ve had so many negative 
  experiences with doctors..the neurologists refuse to give me anything 
  for pain. They want me to have a nerve biopsy, which I have read will 
  cause numbness in that area, and I don’t need any more numbness.

  I asked Senator Lieberman if he could get some funding to the NIH for TM 
  research and he promised me he would try. He has helped me personally 
  with other issues, so we’ll see.

  Wishing you all the best.

  Kevin

Re: [TMIC] hi all

[jrushton]

Oh, Kevin,

I am so glad your Mom is doing better and so sad that you are having 
problems.  I wish there was something we all could do for you.  I'll keep 
you in my thoughts and prayers...Jeanne 

Re: [TMIC] hi all

[Grace M.]

*Oh Kevin, I'**m so glad that you have posted!   So sorry to hear about your
Mom---what a trauma that must have been for you.  Thank God that she
is doing better now.*
**
*Kev, please don't give up.  And PLEASE stay in touch.   It's been ages
since I've heard from you or seen you post here, and I was getting more than
a little worried.  I'm sure that we all were.*
**
*Be well.*
**
*Gracie  *

[TMIC] hi all

[Kevin Wolfthal]

Dear Friends,

Sorry I haven’t been on lately. My hands have gotten very bad with 
numbness and pain. Last month my Mom collapsed in front of me and I had 
to give her CPR. She revived and spent a month in a nursing home and is 
home now doing better. The trauma of all this has affected my health 
negatively. I am just thankful I was able to get to her in time. This 
has been a fear of mine for a long time.


I have given up on getting help for myself. I’ve had so many negative 
experiences with doctors..the neurologists refuse to give me anything 
for pain. They want me to have a nerve biopsy, which I have read will 
cause numbness in that area, and I don’t need any more numbness.


I asked Senator Lieberman if he could get some funding to the NIH for TM 
research and he promised me he would try. He has helped me personally 
with other issues, so we’ll see.


Wishing you all the best.

Kevin

Re: [TMIC] hi, here is an update on our dear friend Pam

[jrushton]

Thank you, Jenna!  Thank God for this wonderful group and their prayers!  

Jeanne in Dayton

[TMIC] hi, here is an upate on our dear friend Pam

[Jenna]

I wanted to let you all know I did get to talk with Pam tonight.  She is 
working hard and is in so much pain!!  But she has a great attitude and is 
working to get things all working again!!

Jenna


__
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around 
http://mail.yahoo.com 

[TMIC] hi

[T Kanon]

ok, I usually don't report many things that happen to me however I'm wondering 
if this may be happening to others.  Since I don't actually know where my feet 
are I have been having mucho problems with my feet.  This summer I had to have 
surgery to remove the bone in my second toe because the bones were causing 
friction and I was getting one infection after the other.  When the bone was 
removed I had both a staph and a strep infection in it and had to go on mega 
antibiotics.  Now that the bone is gone it seems I am getting irritations near 
the bunion area.  I hope I won't need surgery there, because I also have to 
find a hand specialist for that ole trigger finger which is still bothering me 
but I am choosing to ignore it for now.  After the summer I needed a vacation 
so I went to Eastern Europe for 3 weeks, met my oldest son there for dinner and 
am now ready for the next Act in my life!!
I hope I livened the list up a bit!!!
Take care all
Tobe  :O)
Brooklyn NY


  

Re: [TMIC] Hi all--I'm back again

[ROSEOFRENO]

Hi Sharon ~
   YupI remember you.from ten years ago.  :-)   Welcome back..!
I tend to agree with Trudy about calling your neuro back...it sounds  
like an MS
flare from what you described.  I'm happy to hear you didn't lose  bladder 
control this time...!!
Hopefully your neuro can get it under control by simply changing your  meds.
 
   Prayers go up..blessings come down..
I will lift you.
   Hugs,  Lynn
 
   



**Pt...Have you heard the news? There's a new fashion blog, 
plus the latest fall trends and hair styles at StyleList.com.  
(http://www.stylelist.com/trends?ncid=aolsty000514)

Re: [TMIC] Hi all--I'm back again

[Trudy Ogilvie]

Sharon,Welcome back.  sorry to hear about the flare ups. It is so difficult
to know what the right answer is but I think I would definitely
call back to neuro.. tell him you're worried and need to ask a few more
questions. What are you taking for MS??  Is there anything that can be done?
Increase the meds??? I take copaxone every day, since they can't seem to
decide if it's truly MS or TM... Anyway when in doubt I'd call the neuro...
just my opinion.
Trudy

On Fri, Sep 12, 2008 at 4:01 PM, Sharon M <[EMAIL PROTECTED]> wrote:

> Hi everyone:
>
> Some of you may remember me and most won't.   I had a TM attack in 1997 and
> found this group.  I rejoined several years ago and after a few months
> forgot how to get into the group!  lol  So now I've subscribed once again.
>
> I have never been without symptoms since the TM attack in 97. In that
> attack in just a few hours I became numb on the left side from just below
> the breast to my toes.  It was like a line had been drawn down the middle of
> me and everything was totally numb on the left from that level down.  I lost
> bladder control, too.
>
> I was later dxed with MS in 1998.  Among other symptoms, I have been numb
> since the TM attack in different parts of my body and I have never been
> without some degree of numbness.
>
> For the past 3 weeks I've been abnormally numb.  It is very much like the
> TM attack in 97 except I haven't lost bladder control and this time the
> severe numbness is on the right side. It started under my right breast,
> moving under my arm, around my back  Now the numbness is all the way to
> my toes, except part of my hip.
>
> I did call my neuro and he asked if I thought I was in the middle of a MS
> flare.  At the time I said no because I feel fine.  Now I'm wondering if I
> made a mistake.  Could this be a TM thing?  What do you all think?
>
> glad to be back
>
> Sharon Marsden
>
>
>

Re: [TMIC] Hi all--I'm back again

[Sharon M]

Thanks Amanda.  I am always in a quandary about what to do in situations like 
this.  I don't want to go to the hospital.  Stupid, huh?

I'm sorry you have TM.  How are you doing now?

Sharon

The bluebird in the cedar tree spoke to me... "Your heart's desire dwells 
here--this is where you belong"

--- On Fri, 9/12/08, Amanda Diskey <[EMAIL PROTECTED]> wrote:
From: Amanda Diskey <[EMAIL PROTECTED]>
Subject: Re: [TMIC] Hi all--I'm back again
To: [EMAIL PROTECTED]
Date: Friday, September 12, 2008, 2:32 PM

hey sharon, my name is amanda i was diagnosed about a month ago, and i would 
definitely be afraid it was a tm attack. i would go see my neuro and see if he 
could find out what is going on. i really hope u get feeling better and it is 
not a tm attack. good luck 

--- On Fri, 9/12/08, Sharon M <[EMAIL PROTECTED]> wrote:

From: Sharon M <[EMAIL PROTECTED]>
Subject: [TMIC] Hi all--I'm back again
To: tmic-list@eskimo.com
Date: Friday, September 12, 2008, 4:01 PM






Hi everyone:

Some of you may remember me and most won't.   I had a TM attack in 1997 and 
found this group.  I rejoined several years ago and after a few months forgot 
how to get into the group!  lol  So now I've subscribed once again. 

I have never been without symptoms since the TM attack in 97. In that attack in 
just a few hours I became numb on the left side from just below the breast to 
my toes.  It was like a line had been drawn down the middle of me and 
everything was totally
 numb on the left from that level down.  I lost bladder control, too.  

I was later dxed with MS in 1998.  Among other symptoms, I have been numb since 
the TM attack in different parts of my body and I have never been without some 
degree of numbness.

For the past 3 weeks I've been abnormally numb.  It is very much like the TM 
attack in 97 except I haven't lost bladder control and this time the severe 
numbness is on the right side. It started under my right breast, moving under 
my arm, around my back  Now the numbness is all the way to my toes, except 
part of my
 hip.

I did call my neuro and he asked if I thought I was in the middle of a MS 
flare.  At the time I said no because I feel fine.  Now I'm wondering if I made 
a mistake.  Could this be a TM thing?  What do you all think?

glad to be back

Sharon Marsden









  

Re: [TMIC] Hi all--I'm back again

[Sharon M]

Hi Jan-- good to "see" you!  The thoughts and prayers are always welcome.

Sharon

The bluebird in the cedar tree spoke to me... "Your heart's desire dwells 
here--this is where you belong"

--- On Fri, 9/12/08, Jan Hargrove <[EMAIL PROTECTED]> wrote:
From: Jan Hargrove <[EMAIL PROTECTED]>
Subject: Re: [TMIC] Hi all--I'm back again
To: [EMAIL PROTECTED], "tmic-list" 
Date: Friday, September 12, 2008, 2:29 PM

Sharon,  It's great to see your name pop up again!!  I've wondered about you 
and your family...I'm sorry you're having another bout with whatever, but 
so good to hear 
from you.  Please keep us updated.I (of course) have no clue to 
help, but 
will keep you in my thoughts and prayers!

Hugs, janh
 

--- On Fri, 9/12/08, Sharon M <[EMAIL PROTECTED]> wrote:

From: Sharon M <[EMAIL PROTECTED]>
Subject: [TMIC] Hi all--I'm back again
To: tmic-list@eskimo.com
Date: Friday, September 12, 2008, 3:01 PM






Hi everyone:

Some of you may remember me and most won't.   I had a TM attack in 1997 and 
found this group.  I rejoined several years ago and after a few months forgot 
how to get into the group!  lol  So now I've subscribed once again. 

I have never been without symptoms since the TM attack in 97. In that attack in 
just a few hours I became numb on the left side from just below the breast to 
my toes.  It was like a line had been drawn down the middle of me and 
everything was totally
 numb on the left from that level down.  I lost bladder control, too.  

I was later dxed with MS in 1998.  Among other symptoms, I have been numb since 
the TM attack in different parts of my body and I have never been without some 
degree of numbness.

For the past 3 weeks I've been abnormally numb.  It is very much like the TM 
attack in 97 except I haven't lost bladder control and this time the severe 
numbness is on the right side. It started under my right breast, moving under 
my arm, around my back  Now the numbness is all the way to my toes, except 
part of my
 hip.

I did call my neuro and he asked if I thought I was in the middle of a MS 
flare.  At the time I said no because I feel fine.  Now I'm wondering if I made 
a mistake.  Could this be a TM thing?  What do you all think?

glad to be back

Sharon Marsden

Re: [TMIC] Hi all--I'm back again

[Sharon M]

Thanks Grace.  I've been away from the TM community too long.  No MRI has shown 
any lesions on my spine but my neuro told me he still thought I had a hidden 
spinal lesion.  

Sharon

The bluebird in the cedar tree spoke to me... "Your heart's desire dwells 
here--this is where you belong"

--- On Fri, 9/12/08, Grace M. <[EMAIL PROTECTED]> wrote:
From: Grace M. <[EMAIL PROTECTED]>
Subject: Re: [TMIC] Hi all--I'm back again
To: [EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Date: Friday, September 12, 2008, 1:25 PM

Hi Sharon,
 
It's not uncommon for an MS patient to have an episode of TM.  I have Devic's 
NMO, and have frequent bouts of severe  myelitis.  We have to remember that the 
term Transverse Myelitis means just what it says.  Transverse---transversing, 
or across, Myelitis---inflammation of the spinal cord.  It can be caused by a 
variety of illnesses but is also often idiopathic.  (No known cause.)

 
Gracie  (Devic's NMO since 2005)

Re: [TMIC] Hi all--I'm back again

[Jan Hargrove]

Sharon,  It's great to see your name pop up again!!  I've wondered about you 
and your family...I'm sorry you're having another bout with whatever, but 
so good to hear 
from you.  Please keep us updated.I (of course) have no clue to 
help, but 
will keep you in my thoughts and prayers!

Hugs, janh
 

--- On Fri, 9/12/08, Sharon M <[EMAIL PROTECTED]> wrote:

From: Sharon M <[EMAIL PROTECTED]>
Subject: [TMIC] Hi all--I'm back again
To: tmic-list@eskimo.com
Date: Friday, September 12, 2008, 3:01 PM






Hi everyone:

Some of you may remember me and most won't.   I had a TM attack in 1997 and 
found this group.  I rejoined several years ago and after a few months forgot 
how to get into the group!  lol  So now I've subscribed once again. 

I have never been without symptoms since the TM attack in 97. In that attack in 
just a few hours I became numb on the left side from just below the breast to 
my toes.  It was like a line had been drawn down the middle of me and 
everything was totally numb on the left from that level down.  I lost bladder 
control, too.  

I was later dxed with MS in 1998.  Among other symptoms, I have been numb since 
the TM attack in different parts of my body and I have never been without some 
degree of numbness.

For the past 3 weeks I've been abnormally numb.  It is very much like the TM 
attack in 97 except I haven't lost bladder control and this time the severe 
numbness is on the right side. It started under my right breast, moving under 
my arm, around my back  Now the numbness is all the way to my toes, except 
part of my hip.

I did call my neuro and he asked if I thought I was in the middle of a MS 
flare.  At the time I said no because I feel fine.  Now I'm wondering if I made 
a mistake.  Could this be a TM thing?  What do you all think?

glad to be back

Sharon Marsden

Re: [TMIC] Hi all--I'm back again

[Grace M.]

*Hi Sharon,*

**
*It's not uncommon for an MS patient to have an episode of TM.  I have
Devic's NMO, and have frequent bouts of severe  myelitis.  We have to
remember that the term Transverse Myelitis means just what it says.
Transverse---transversing, or across, Myelitis---inflammation of the spinal
cord.  It can be caused by a variety of illnesses but is also often
idiopathic.  (No known cause.)*
**
*Gracie  (Devic's NMO since 2005)*

[TMIC] Hi all--I'm back again

[Sharon M]

Hi everyone:

Some
of you may remember me and most won't.   I had a TM attack in 1997 and
found this group.  I rejoined several years ago and after a few months
forgot how to get into the group!  lol  So now I've subscribed once
again. 

I
have never been without symptoms since the TM attack in 97. In that
attack in just a few hours I became numb on the left side from just
below the breast to my toes.  It was like a line had been drawn down
the middle of me and everything was totally numb on the left from that
level down.  I lost bladder control, too.  

I
was later dxed with MS in 1998.  Among other symptoms, I have been numb
since the TM attack in different parts of my body and I have never been
without some degree of numbness.

For
the past 3 weeks I've been abnormally numb.  It is very much like the
TM attack in 97 except I haven't lost bladder control and this time the
severe numbness is on the right side. It started under my right breast,
moving under my arm, around my back  Now the numbness is all the
way to my toes, except part of my hip.

I
did call my neuro and he asked if I thought I was in the middle of a MS
flare.  At the time I said no because I feel fine.  Now I'm wondering
if I made a mistake.  Could this be a TM thing?  What do you all think?

glad to be back

Sharon Marsden

Re: [TMIC] Hi I'm New Here

[Grace M.]

*Hi Jeanne,*
**
*You are so kind to say so.  I'd do anything to spread Devic's Awareness.
Currently, we're working on our new database of NMO patients for the TMA.
Sandy Siegel, very graciously offered to print a directory of Devic's
patients.  It will help us to further our efforts, immensely.   *
**
*XOXO  Gracie  *

   *   *
>
>
>
>
>

Re: [TMIC] Hi I'm New Here

[jrushton]

You are such a nice person, Gracie... j 
 
---Original Message---
 
From: Grace M.
Date: 8/14/2008 10:29:44 AM
To: tmic-list@eskimo.com
Subject: [TMIC] Hi I'm New Here
 


Hello again Assunta,
 
I've sent you three  files including the latest Devic's research paper out
of the Mayo.  Two of them are in pdf. form.  I've enclosed a short mail
along with the Devic's NMO Diagnostic Criteria.  I've also processed your
membership form for the Devic's NMO Advocacy and Support Group.  
 
Sincerely,
Gracie
 
 


 <<17.jpg>>

Re: [TMIC] Hi I'm New Here

[jrushton]

Welcome, Assunta!  You will find a wonderful lifeline of new 'friends' here
that , between us all, are living the with the same symptoms you are.  You
will find all sorts of caring people with unending support of all kinds. 
Already, from reading your symptoms and what you went through, it is like
reading about our own experience, some word for word!  Again, welcome!!

Jeanne in Dayton, WA


---Original Message---
 
From: Assunta Rene
Date: 8/14/2008 3:38:28 AM
To: tmic-list@eskimo.com
Subject: [TMIC] Hi I'm New Here
 
 
Hi my name Assunta and I have been diagnosed with Devic's Disease (NMO). I
live in Italy but I'm originally from Seattle, WA.
 
This scary experience all started seven years ago when I started to lose eye
site in my left eye and was told it was Optic Neuritis. Over the years my
eye site returned but not completely. 
 
Then December of 2006 I had started to have a pain in my shoulder, the
doctors told me that it was frozen shoulder and they started a treatment.  I
started to have tingling in my fingers and leg on my right side the after a
few days I was paralysed in my right arm, leg, torso and tingling this time
in my fingers and leg on my left side.  My husband brought me to the ER and
they recovered me in neurology, where after blood tests and a MRI, which
showed a lesion at the level of T2 and C2 - C5. They diagnosed NMO.  They
told me that the eye site problem that I had 1999 was the onsite of NMO not
diagnosed.  They started me on IV methylprednisolone to stop the attack. I
started occupational therapy and physiotherapy plus I take anticonvulsant
medication for the tightening of arms and legs and torso banding. The
paralysis is gone, but I still have numbness, burning and fatigue. 
 
Here in Italy (I live in small town) this disease is very rare and it is a
miracle that it was diagnose and I thank God everyday for this very special
doctor. My family has been great, especially my husband. 
 
I really like to talk to someone who understands the nerve ending burning
pain, or all the other discomforts that goes along with this disease. I
would love to share stories, both humorous and serious".  
 
I was wondering if anyone could help me...I will be visiting Seattle this
winter and would like to see a Doctor to review my medical charts to see if
the diagnosis and the treatment are right. 
 
Thank you,
Assunta 
 <<17.jpg>>

[TMIC] Hi I'm New Here

[Grace M.]

> *Hello again Assunta,*


*I've sent you three  files including the latest Devic's research paper out
of the Mayo.  Two of them are in pdf. form.  I've enclosed a short mail
along with the Devic's NMO Diagnostic Criteria.  I've also processed your
membership form for the Devic's NMO Advocacy and Support Group.  *
**
*Sincerely,*
*Gracie*

Re: [TMIC] Hi I'm New Here

[Jenna]

Hi Assunta, 
Welcome to our group.  I also have Devic's and mine started a lot like yours.  
Lost sight in my right eye in 1996 and again in 1999.  Then in 2000 the lesion  
happened in my spine. 

I am doing great now.  I have found this group to be helpful and somebody 
always knows the answer to your questions.  Just ask anything you want to know.

 Jenna



- Original Message 
From: Assunta Rene <[EMAIL PROTECTED]>
To: tmic-list@eskimo.com
Sent: Thursday, August 14, 2008 4:38:06 AM
Subject: [TMIC] Hi I'm New Here


 
Hi my name Assunta and I have been 
diagnosed with Devic's Disease (NMO). I live in Italy but I'm originally from 
Seattle, WA.
  
This scary experience all started 
seven years ago when I started to lose eye site in my left eye and was told it 
was Optic Neuritis. Over the years my eye site returned but not completely. 
  
Then December of 2006 I had 
started to have a pain in my shoulder, the doctors told me that it was frozen 
shoulder and they started a treatment.  I started to have tingling in my 
fingers and leg on my right side the 
after a few days I was paralysed in my right arm, leg, torso and tingling this 
time in my fingers and leg on my left side.  My husband brought me to the ER 
and they 
recovered me in neurology, where after blood tests and a MRI, which showed a 
lesion at the level of T2 and C2 - C5. They diagnosed NMO.  They told me that 
the eye site problem 
that I had 1999 was the onsite of NMO not diagnosed.  They started me on IV 
methylprednisolone 
to stop the attack. I started occupational therapy and physiotherapy plus I 
take 
anticonvulsant medication for the tightening of arms and legs and torso 
banding. 
The paralysis is gone, but I still have numbness, burning and fatigue. 
  
Here in Italy (I live in small 
town) this disease is very rare and it is a miracle that it was diagnose and I 
thank God everyday for this very special doctor. My family has been great, 
especially my husband. 
  
I really like to talk to someone 
who understands the nerve ending burning pain, or all the other discomforts 
that 
goes along with this disease. I would love to share stories, both humorous and 
serious".  
  
I was wondering if anyone could 
help me...I will be visiting Seattle this winter and would like to see a Doctor 
to review my medical charts to see if the diagnosis and the treatment are 
right. 
  
Thank 
you,
Assunta 


  

Re: [TMIC] Hi I'm New Here/Also Assunta.....

[Grace M.]

*The recommendation is that you be kept in an immunosuppressed state.  The
oral drugs used, are Imuran (Azathioprine.), Prednisone, or CellCept
(Mycophenolate Mofetil.)  Currently, the infusion of choice for disease
maintenance is Rituxan (Rituximab).*
**
*Gracie  *

Re: [TMIC] Hi I'm New Here

[Grace M.]

  *Hello Assunta,*
>
>
> *I too have Devic's Neuromyelitis Optica.  Are you seropositive for  the
> disease?  Where were you diagnosed, and did you have the NMO IgG test via
> the Mayo Clinic, or were you diagnosed by the presence of other clinical
> signs?  *
> **
> *If you would like, I can send your information from our files.*
> **
> *sincerely,*
> *Gracie*
> [EMAIL PROTECTED]
> *Site Address:*
> http://groups.google.com/group/Devics-support
>

[TMIC] Hi I'm New Here

[Assunta Rene]

Hi my name Assunta and I have been diagnosed with Devic's Disease (NMO). I live 
in Italy but I'm originally from Seattle, WA.

 

This scary experience all started seven years ago when I started to lose eye 
site in my left eye and was told it was Optic Neuritis. Over the years my eye 
site returned but not completely. 

 

Then December of 2006 I had started to have a pain in my shoulder, the doctors 
told me that it was frozen shoulder and they started a treatment.  I started to 
have tingling in my fingers and leg on my right side the after a few days I was 
paralysed in my right arm, leg, torso and tingling this time in my fingers and 
leg on my left side.  My husband brought me to the ER and they recovered me in 
neurology, where after blood tests and a MRI, which showed a lesion at the 
level of T2 and C2 - C5. They diagnosed NMO.  They told me that the eye site 
problem that I had 1999 was the onsite of NMO not diagnosed.  They started me 
on IV methylprednisolone to stop the attack. I started occupational therapy and 
physiotherapy plus I take anticonvulsant medication for the tightening of arms 
and legs and torso banding. The paralysis is gone, but I still have numbness, 
burning and fatigue. 

 

Here in Italy (I live in small town) this disease is very rare and it is a 
miracle that it was diagnose and I thank God everyday for this very special 
doctor. My family has been great, especially my husband. 

 

I really like to talk to someone who understands the nerve ending burning pain, 
or all the other discomforts that goes along with this disease. I would love to 
share stories, both humorous and serious".  

 

I was wondering if anyone could help me...I will be visiting Seattle this 
winter and would like to see a Doctor to review my medical charts to see if the 
diagnosis and the treatment are right. 

 

Thank you,

Assunta 

[TMIC] hi

[ACAROE]

Hi all,   Just met someone  through a third party who came down with TM .  
She doesn't live too far  from me and would like to be added to the list.
Dont know if I  gave her the correct way of doing it.  
Would someone  email her and let her know how to subscribe.   Her email 
is [EMAIL PROTECTED] (mailto:[EMAIL PROTECTED]) .  (name is  Debbie)
Thanks, Rosalie  (from Long Island, NY - summer only)



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Re: [TMIC] Hi Guys---Jude (Judy) is hospitalised.

[[EMAIL PROTECTED]]

Grace,
Thanks for letting us know.  Can you give me the name, address, & phone number 
for the hospital she's in?
Thanks,
Sally

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Re: [TMIC] Hi Guys---Jude (Judy) is hospitalised.

[jrushton]

For a long, long time, especially working as a nurse, I would see someone or
hear about someone that could use a prayer. Plus having a very large family
and different worries that comes with that, I began writing name(s) on a
tiny little piece of paper and putting them in a pretty little pot that had
a lid on it.  It was amazing how many that little pot held.  When I had to
quit working because of the TM, I put that little pot on a shelf and started
a new one and that one is now full but still seems to hold just one more
name.  That is where Jude's name went. They are just another way of saying a
personal prayer to God.

A funny story...when I was working I had a very wonderful friend and
co-worker who had been trying with his wife for many years to have a child. 
I told him I would put their name in my little prayer pot and low and behold
 they had triplets so we always laugh about being careful about what is put
in the prayer potit might turn out triplets!!  j
 
---Original Message---
 
From: Westgold
Date: 12/9/2007 9:17:02 PM
To: jrushton
Subject: Re: [TMIC] Hi Guys---Jude (Judy) is hospitalised.
 
Hello -- please tell me about your little Prayer Pot -- what a lovely idea! 

- Original Message - 
From: jrushton 
To: Grace M. ; tmic-list@eskimo.com 
Sent: Sunday, December 09, 2007 7:56 PM
Subject: Re: [TMIC] Hi Guys---Jude (Judy) is hospitalised.


Her name just went in my little Prayer Pot.
 
Jeanne in Dayton, WA
 
---Original Message---
 
From: Grace M.
Date: 12/9/2007 8:51:50 PM
To: Subject: [TMIC] Hi Guys---Jude (Judy) is hospitalised.
 
I phoned Jude at the hospital this evening.  She's in good spirits, but very
anxious to have her medical probelms resolved.  She asked me to let you all
know where she is, and that she is thinking of all of you and sending good
wishes.  She's in very good spirits.  The goal is first, to remove her gall
stones.  Let's all hope that they are able to remove her stones with a
minimally invasive procedure as opposed to a major operation.  Pam and I
will stay in touch with her and keep you all posted. 
 
Grace  
 






No virus found in this incoming message.
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Version: 7.5.503 / Virus Database: 269.16.17/1179 - Release Date: 12/9/2007
11:06 AM

 <>

Re: [TMIC] Hi Guys---Jude (Judy) is hospitalised.

[sal r]

i will be praying for jude, please let her know

"Grace M." <[EMAIL PROTECTED]> wrote:I phoned Jude at the hospital this 
evening.  She's in good spirits, but very anxious to have her medical probelms 
resolved.  She asked me to let you all know where she is, and that she is 
thinking of all of you and sending good wishes.  She's in very good spirits.  
The goal is first, to remove her gall stones.  Let's all hope that they are 
able to remove her stones with a minimally invasive procedure as opposed to a 
major operation.  Pam and I will stay in touch with her and keep you all 
posted. 
   
  Grace  


   
-
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Re: [TMIC] Hi Guys---Jude (Judy) is hospitalised.

[L T CHERPESKI]

Thanks for letting us know, Grace. Glad to hear that her spirits are good and 
hoping they can do this without a major operation. Please tell her we are 
thinking nothing but positive thoughts and she is in my prayers.

Linda in Eagle, ID
  - Original Message - 
  From: jrushton<mailto:[EMAIL PROTECTED]> 
  To: Grace M.<mailto:[EMAIL PROTECTED]> ; 
tmic-list@eskimo.com<mailto:tmic-list@eskimo.com> 
  Sent: Sunday, December 09, 2007 5:56 PM
  Subject: Re: [TMIC] Hi Guys---Jude (Judy) is hospitalised.


Her name just went in my little Prayer Pot.

Jeanne in Dayton, WA

---Original Message---

From: Grace M.<mailto:[EMAIL PROTECTED]>
Date: 12/9/2007 8:51:50 PM
        To: Subject: [TMIC] Hi Guys---Jude (Judy) is hospitalised.

I phoned Jude at the hospital this evening.  She's in good spirits, but 
very anxious to have her medical probelms resolved.  She asked me to let you 
all know where she is, and that she is thinking of all of you and sending good 
wishes.  She's in very good spirits.  The goal is first, to remove her gall 
stones.  Let's all hope that they are able to remove her stones with a 
minimally invasive procedure as opposed to a major operation.  Pam and I will 
stay in touch with her and keep you all posted. 

Grace  
   
   
   
<>

Re: [TMIC] Hi Guys---Jude (Judy) is hospitalised.

[jrushton]

Her name just went in my little Prayer Pot.

Jeanne in Dayton, WA
 
---Original Message---
 
From: Grace M.
Date: 12/9/2007 8:51:50 PM
To: Subject: [TMIC] Hi Guys---Jude (Judy) is hospitalised.
 
I phoned Jude at the hospital this evening.  She's in good spirits, but very
anxious to have her medical probelms resolved.  She asked me to let you all
know where she is, and that she is thinking of all of you and sending good
wishes.  She's in very good spirits.  The goal is first, to remove her gall
stones.  Let's all hope that they are able to remove her stones with a
minimally invasive procedure as opposed to a major operation.  Pam and I
will stay in touch with her and keep you all posted. 
 
Grace  
 <>

[TMIC] Hi Guys---Jude (Judy) is hospitalised.

[Grace M.]

*I phoned Jude at the hospital this evening.  She's in good spirits, but
very anxious to have her medical probelms resolved.  She asked me to let you
all know where she is, and that she is thinking of all of you and sending
good wishes.  She's in very good spirits.  The goal is first, to remove her
gall stones.  Let's all hope that they are able to remove her stones with a
minimally invasive procedure as opposed to a major operation.  Pam and I
will stay in touch with her and keep you all posted.*
**
*Grace  *

[TMIC] Hi all

[natalie mizenko]

Hi all,
  I haven't been online due to the severe spasms I've been in bed.  If I don't 
overdue than they seem to be some better.  I get sick of bed tho.  Anyways, I 
was wondering if any of you have a urostomy put in?  I have but as soon as I 
put it in my pants, it leaks all over.  It is so frustrating.  My husband put 
one in last night and it's fine if I'm lying on my bed not moving but if I get 
up like just now, bam it leaks down my leg and all.  Help??? Thanks and hope 
all is going good for all.  Natalie M.
  

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Re: [TMIC] Hi Stacy

[Larry Throne]

Stacy,
One of the foster mothers I worked with several years ago started back to school at age fifty-two.  She got her BSW then went straight after her MSW.  Six years later she is the executive director of a rural mental health agency.  I've often heard it said that whether it takes you two or ten years to get what you want. If your lucky, you'll be two or ten years older either way.  Only you will have a degree if you keep plugging.  
Larry in Oklahoma who found his niche in Social Work

Larry Throne, MSW


From: "Stacy Harim" <[EMAIL PROTECTED]>To: "TM list" , "Jill Z" <[EMAIL PROTECTED]>Subject: Re: [TMIC] Hi StacyDate: Fri, 21 Sep 2007 11:00:32 -0400


Don’t speak so quick. I don't know how long it will take for me to get back to it.  I messed myself up pretty bad with my back.  A lot of therapy is still needed.  I'm still trying to figure out how to get to my feet so I can get dressed in a fair amount of time. LOL.
 
stacy

- Original Message - 
From: Jill Z 
To: Stacy Harim ; TM list 
Sent: Monday, September 17, 2007 10:45 PM
Subject: Re: [TMIC] Hi Stacy

Stacy, 
I'm still trying to finish my Bachelors Degree and I'm 37  You guys are lucky!Stacy Harim <[EMAIL PROTECTED]> wrote:


I've come to grips.  I also want to get my masters and doctrine.  I feel like I'll be in school forever and if I don't get that far, then that's ok too.  I want to at least get my masters and hopefully teach part time.  With a social work masters, I can bring awareness to students going into the field.
 
Stacy

- Original Message - 
From: randy rankin 
To: Stacy Harim 
Sent: Monday, September 17, 2007 5:10 PM
Subject: Re: [TMIC] Hi Stacy

Stacy - 
 
Don't feel bad about graduating when you are 35. I started working on my doctorate at 38 - now I'm 40 and hope to graduate in another year or two. TM hit me the same DAY that I started school - can you believe it?
 
Instead of being in class, or at work, i was in the hospital paralyized from the waist down. Had I not listen to that inner voice, instead of the idiots at work, it would have been full paraylized with loss of blatter instead of have a partial problem with my right leg. Thank God I walked  well limped and drug myself off the job and went to the clinic. My boss wrote me up for defiance but they all back tracted when they realized how much trouble they were about to get into. 
 
Keep working on your school - slowly but surely you'll have it out of the way!! Stacy Harim <[EMAIL PROTECTED]> wrote:




Hi Jude,
 
I'm pretty OK.  I was trying to give Regina a glimmer of hope.  I believe that any of us that have to deal with the physical/mental after affects of TM or ADEM are brave.  I know I will get out of this bed soon.  I won't be the same as I was before the spinal fusion but I still have my arms and with work, I will be more independent again.  I was going to school for social work so I can help others with disabilities and plan to finish when I can.  I did have a down time in May before I broke my back when everyone was graduating bc I was also supposed to graduate and I still have 2 years left.  I am only 33 but it does get discouraging to think I'll be 35 before I'm finished.  I have a lot of debt to pay off and want to one day own a house and have it paid off before I retire which seems it  might be impossible but in reality I know its not.
 
I think we do learn from each other and without this and that quadlist, I would be lost without knowing what to do. I do more reading here hence the lace of replies but it doesn't mean I don't get anything out of it.
 
Thanks to you all,
Stacy

- Original Message - 
From: [EMAIL PROTECTED] 
To: [EMAIL PROTECTED] ; tmic-list@eskimo.com 
Sent: Saturday, September 15, 2007 5:28 AM
Subject: Re: [TMIC] Hi Stacy


In a message dated 9/14/2007 4:19:05 PM Eastern Daylight Time, [EMAIL PROTECTED] writes:
 

Stacy and Regina,
 
Whatever you both do, please stay with us and give us a good  try.  I'm relatively certain that we will help you and I'm sure that in turn, we will learn something from the experience you have gone through.
 
Best of everything to you both,
Jude
 
"Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great Glory that will last forever"
2 Corinthians 4:17NLT


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Re: [TMIC] Hi Stacy

[Stacy Harim]

Thank you Barbara and everyone else giving me encouragement  I really 
appreciate the thoughtfulness.  You all are great support.

Stacy
  - Original Message - 
  From: [EMAIL PROTECTED]<mailto:[EMAIL PROTECTED]> 
  To: tmic-list@eskimo.com<mailto:tmic-list@eskimo.com> 
  Sent: Tuesday, September 18, 2007 12:29 AM
  Subject: Re: [TMIC] Hi Stacy


  Hi Stacy,

  You Rock!  I absolutely believe that you will get you degree, whether it be a 
masters and doctrine or not, you will be able to bring awareness to students 
going into the field.  And, if you go into social work of any kind, you will do 
that as well.  You have the kind of determination that is needed to succeed and 
get yourself going, even after the problems and surgeries you've had with your 
spine.  I think you can go one step backward and two steps forward, and not all 
of us can do that.  YOU GO GIRL!!

  Anytime you are feeling like you need a pep talk, just let me know.  I'm here 
for you!

  Hugs, Barbara A





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Re: [TMIC] Hi Stacy

[Stacy Harim]

Don't speak so quick. I don't know how long it will take for me to get back to 
it.  I messed myself up pretty bad with my back.  A lot of therapy is still 
needed.  I'm still trying to figure out how to get to my feet so I can get 
dressed in a fair amount of time. LOL.

stacy
  - Original Message - 
  From: Jill Z<mailto:[EMAIL PROTECTED]> 
  To: Stacy Harim<mailto:[EMAIL PROTECTED]> ; TM 
list<mailto:tmic-list@eskimo.com> 
  Sent: Monday, September 17, 2007 10:45 PM
  Subject: Re: [TMIC] Hi Stacy


  Stacy, 
  I'm still trying to finish my Bachelors Degree and I'm 37  You guys are 
lucky!

  Stacy Harim <[EMAIL PROTECTED]<mailto:[EMAIL PROTECTED]>> wrote:
I've come to grips.  I also want to get my masters and doctrine.  I feel 
like I'll be in school forever and if I don't get that far, then that's ok too. 
 I want to at least get my masters and hopefully teach part time.  With a 
social work masters, I can bring awareness to students going into the field.

Stacy
  - Original Message - 
  From: randy rankin<mailto:[EMAIL PROTECTED]> 
  To: Stacy Harim<mailto:[EMAIL PROTECTED]> 
  Sent: Monday, September 17, 2007 5:10 PM
  Subject: Re: [TMIC] Hi Stacy


  Stacy - 

  Don't feel bad about graduating when you are 35. I started working on my 
doctorate at 38 - now I'm 40 and hope to graduate in another year or two. TM 
hit me the same DAY that I started school - can you believe it?

  Instead of being in class, or at work, i was in the hospital paralyized 
from the waist down. Had I not listen to that inner voice, instead of the 
idiots at work, it would have been full paraylized with loss of blatter instead 
of have a partial problem with my right leg. Thank God I walked  well 
limped and drug myself off the job and went to the clinic. My boss wrote me up 
for defiance but they all back tracted when they realized how much trouble they 
were about to get into. 

  Keep working on your school - slowly but surely you'll have it out of the 
way!! 

  Stacy Harim <[EMAIL PROTECTED]> wrote:
Hi Jude,

I'm pretty OK.  I was trying to give Regina a glimmer of hope.  I 
believe that any of us that have to deal with the physical/mental after affects 
of TM or ADEM are brave.  I know I will get out of this bed soon.  I won't be 
the same as I was before the spinal fusion but I still have my arms and with 
work, I will be more independent again.  I was going to school for social work 
so I can help others with disabilities and plan to finish when I can.  I did 
have a down time in May before I broke my back when everyone was graduating bc 
I was also supposed to graduate and I still have 2 years left.  I am only 33 
but it does get discouraging to think I'll be 35 before I'm finished.  I have a 
lot of debt to pay off and want to one day own a house and have it paid off 
before I retire which seems it  might be impossible but in reality I know its 
not.

I think we do learn from each other and without this and that quadlist, 
I would be lost without knowing what to do. I do more reading here hence the 
lace of replies but it doesn't mean I don't get anything out of it.

Thanks to you all,
Stacy
  - Original Message - 
  From: [EMAIL PROTECTED]<mailto:[EMAIL PROTECTED]> 
  To: [EMAIL PROTECTED]<mailto:[EMAIL PROTECTED]> ; 
tmic-list@eskimo.com<mailto:tmic-list@eskimo.com> 
  Sent: Saturday, September 15, 2007 5:28 AM
  Subject: Re: [TMIC] Hi Stacy


  In a message dated 9/14/2007 4:19:05 PM Eastern Daylight Time, [EMAIL 
PROTECTED]<mailto:[EMAIL PROTECTED]> writes:

  Stacy and Regina,

  Whatever you both do, please stay with us and give us a good  try.  
I'm relatively certain that we will help you and I'm sure that in turn, we will 
learn something from the experience you have gone through.

  Best of everything to you both,
  Jude

  "Our present troubles are quite small and won't last very long. Yet 
they produce for us an immeasurably great Glory that will last forever"

  2 Corinthians 4:17
  NLT







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Re: [TMIC] Hi Stacy

[Balmatmic]

Hi Stacy,
 
You Rock!  I absolutely believe that you will get  you degree, whether it be 
a masters and doctrine or not, you will be able to  bring awareness to 
students going into the field.  And, if you go into  social work of any kind, 
you 
will do that as well.  You have the kind  of determination that is needed to 
succeed and get yourself going, even after  the problems and surgeries you've 
had 
with your spine.  I think you can go  one step backward and two steps forward, 
and not all of us can do that.   YOU GO GIRL!!
 
Anytime you are feeling like you need a pep talk, just let me  know.  I'm 
here for you!
 
Hugs, Barbara A



** See what's new at http://www.aol.com

Re: [TMIC] Hi Stacy

[Stacy Harim]

I've come to grips.  I also want to get my masters and doctrine.  I feel like 
I'll be in school forever and if I don't get that far, then that's ok too.  I 
want to at least get my masters and hopefully teach part time.  With a social 
work masters, I can bring awareness to students going into the field.

Stacy
  - Original Message - 
  From: randy rankin<mailto:[EMAIL PROTECTED]> 
  To: Stacy Harim<mailto:[EMAIL PROTECTED]> 
  Sent: Monday, September 17, 2007 5:10 PM
  Subject: Re: [TMIC] Hi Stacy


  Stacy - 

  Don't feel bad about graduating when you are 35. I started working on my 
doctorate at 38 - now I'm 40 and hope to graduate in another year or two. TM 
hit me the same DAY that I started school - can you believe it?

  Instead of being in class, or at work, i was in the hospital paralyized from 
the waist down. Had I not listen to that inner voice, instead of the idiots at 
work, it would have been full paraylized with loss of blatter instead of have a 
partial problem with my right leg. Thank God I walked  well limped and drug 
myself off the job and went to the clinic. My boss wrote me up for defiance but 
they all back tracted when they realized how much trouble they were about to 
get into. 

  Keep working on your school - slowly but surely you'll have it out of the 
way!! 

  Stacy Harim <[EMAIL PROTECTED]> wrote:
Hi Jude,

I'm pretty OK.  I was trying to give Regina a glimmer of hope.  I believe 
that any of us that have to deal with the physical/mental after affects of TM 
or ADEM are brave.  I know I will get out of this bed soon.  I won't be the 
same as I was before the spinal fusion but I still have my arms and with work, 
I will be more independent again.  I was going to school for social work so I 
can help others with disabilities and plan to finish when I can.  I did have a 
down time in May before I broke my back when everyone was graduating bc I was 
also supposed to graduate and I still have 2 years left.  I am only 33 but it 
does get discouraging to think I'll be 35 before I'm finished.  I have a lot of 
debt to pay off and want to one day own a house and have it paid off before I 
retire which seems it  might be impossible but in reality I know its not.

I think we do learn from each other and without this and that quadlist, I 
would be lost without knowing what to do. I do more reading here hence the lace 
of replies but it doesn't mean I don't get anything out of it.

Thanks to you all,
Stacy
  - Original Message - 
  From: [EMAIL PROTECTED]<mailto:[EMAIL PROTECTED]> 
  To: [EMAIL PROTECTED]<mailto:[EMAIL PROTECTED]> ; 
tmic-list@eskimo.com<mailto:tmic-list@eskimo.com> 
  Sent: Saturday, September 15, 2007 5:28 AM
  Subject: Re: [TMIC] Hi Stacy


  In a message dated 9/14/2007 4:19:05 PM Eastern Daylight Time, [EMAIL 
PROTECTED]<mailto:[EMAIL PROTECTED]> writes:

  Stacy and Regina,

  Whatever you both do, please stay with us and give us a good  try.  I'm 
relatively certain that we will help you and I'm sure that in turn, we will 
learn something from the experience you have gone through.

  Best of everything to you both,
  Jude

  "Our present troubles are quite small and won't last very long. Yet they 
produce for us an immeasurably great Glory that will last forever"

  2 Corinthians 4:17
  NLT







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and Make AOL Your 
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<http://us.rd.yahoo.com/evt=48254/*http://answers.yahoo.com/dir/_ylc=X3oDMTI5MGx2aThyBF9TAzIxMTU1MDAzNTIEX3MDMzk2NTQ1MTAzBHNlYwNCQUJwaWxsYXJfTklfMzYwBHNsawNQcm9kdWN0X3F1ZXN0aW9uX3BhZ2U-?link=list&sid=396545469>from
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Re: [TMIC] Hi Stacy

[Stacy Harim]

Hi Jude,

I'm pretty OK.  I was trying to give Regina a glimmer of hope.  I believe that 
any of us that have to deal with the physical/mental after affects of TM or 
ADEM are brave.  I know I will get out of this bed soon.  I won't be the same 
as I was before the spinal fusion but I still have my arms and with work, I 
will be more independent again.  I was going to school for social work so I can 
help others with disabilities and plan to finish when I can.  I did have a down 
time in May before I broke my back when everyone was graduating bc I was also 
supposed to graduate and I still have 2 years left.  I am only 33 but it does 
get discouraging to think I'll be 35 before I'm finished.  I have a lot of debt 
to pay off and want to one day own a house and have it paid off before I retire 
which seems it  might be impossible but in reality I know its not.

I think we do learn from each other and without this and that quadlist, I would 
be lost without knowing what to do. I do more reading here hence the lace of 
replies but it doesn't mean I don't get anything out of it.

Thanks to you all,
Stacy
  - Original Message - 
  From: [EMAIL PROTECTED]<mailto:[EMAIL PROTECTED]> 
  To: [EMAIL PROTECTED]<mailto:[EMAIL PROTECTED]> ; 
tmic-list@eskimo.com<mailto:tmic-list@eskimo.com> 
  Sent: Saturday, September 15, 2007 5:28 AM
  Subject: Re: [TMIC] Hi Stacy


  In a message dated 9/14/2007 4:19:05 PM Eastern Daylight Time, [EMAIL 
PROTECTED]<mailto:[EMAIL PROTECTED]> writes:

  Stacy and Regina,

  Whatever you both do, please stay with us and give us a good  try.  I'm 
relatively certain that we will help you and I'm sure that in turn, we will 
learn something from the experience you have gone through.

  Best of everything to you both,
  Jude

  "Our present troubles are quite small and won't last very long. Yet they 
produce for us an immeasurably great Glory that will last forever"

  2 Corinthians 4:17
  NLT








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Re: [TMIC] Hi Stacy

[Heyjude48458]

 
In a message dated 9/14/2007 4:19:05 PM Eastern Daylight Time,  
[EMAIL PROTECTED] writes:




Stacy and Regina,
 
Whatever you both do, please stay with us and give us  a good  try.  I'm 
relatively certain that we will help you and I'm  sure that in turn, we will 
learn 
something from the experience you have gone  through.
 
Best of everything to you both,
Jude
 
"Our present troubles are quite small and won't last very long. Yet  they 
produce for us an immeasurably great Glory that will last forever"

2 Corinthians 4:17
NLT





** See what's new at http://www.aol.com

[TMIC] Hi Stacy

[Regina Rummel]

The more I read "our" emails, the more amazed I am at the challenges some of us 
put up with and still manage to retain our sanity.  To be hit with this at 33, 
well, it's too young...  But children get it too...  That you feel strong 
enough to consider going on with your studies is a good sign, and who else can 
be of more help to the disabled as you intend to be, but you, who's been in 
that yukky boat.  Anyway, good luck Stacy, I still think that "you" are the 
brave one.
   
  As for me, my TM problem was diagnozed in 2004, but symptoms were there long 
before but not recognized.  I struggle with it.  I get discouraged at times and 
send these "depressed" emails.  You should see me pause before pressing that 
"send" prompt.  And after sending it, I hate myself, calling myself a cry-baby 
and hating to check the responses in shame.  But you know, that's what we're 
all about, isn't it?  Helping each other, no matter what.  And then I'm so 
touched by the responses.  You are all so kind.
   
  Stacy, I wish I were closer to you so I could visit you and help you.  They 
do say that it's the thought that counts, but in this case, it hardly seems 
enough.
  In friendship.
  R
   
   
   
   

Re: [TMIC] Hi to all...

[Grace M.]

Hi Natalie,

Sorry to hear that you're having such a time of it with the pain.   I hope
that things will be resolved for you soon.

Feel better,
Grace



>
>
> --
> Got a little couch potato?
> Check out fun summer activities for 
> kids.
>
>

[TMIC] Hi to all...

[natalie mizenko]

Hi everyone,
  I've been the last week in bed totally in severe and excruiating pain.  It is 
unreal pain I am going thru.  I spent back in the hospital for it 2 weeks or so 
ago.  I was in I think 10 days this time.  It is like pulling teeth to find a 
good pain dr. or any.  My pcp has been trying and his shi..y nurse just told my 
husband today, they were waiting on my previous pain doc's records to get me in 
at University of Ark. Med. Center.  It's like we've been waiting 6 weeks & 
today she happens to tell him.
  She also said "Natalie called in something about Soma this week I don't know 
if she needs it or not?"  Would you from now on call in for her on 
precriptions?  Like now lost my legs and I have no brain to call in my scripts 
I need.  I hate her - nobody likes her.  And yet my pcp puts up w/ her because 
she can keep up w/ his business.  That is what he told this lady I know who 
quit him & told him why - it was all about his nurse.  She use to be a prision 
guard!!!  She needs to go back to prision!!  Who is all?  I hope I can check my 
messages tomorrow too.  I hope I can have some time out of bed this weekend.  
Take care, Natalie M.
  

   
-
Got a little couch potato? 
Check out fun summer activities for kids.

Re: [TMIC] Hi, I sent you an e-card from AOL Greetings.

[natalie mizenko]

Hi Jude,
  That is really cute the b-day card.  Thanks, Natalie
  
  

"[EMAIL PROTECTED]" <[EMAIL PROTECTED]> wrote:  To view your 
e-card, please click on the following link: 

http://greetings.aol.com/view.pd?i=89671268&m=7494&rr=y&source=aold999 

Or, if your e-mail program does not recognize the above address as a link, just 
copy and paste the link into your web browser's "address" window. 

We hope you enjoy your e-card! 

Please visit us again soon. Go to: http://greetings.aol.com or AOL Keyword: 
Greetings. 


The AOL Greetings Team   

 
-
No need to miss a message. Get email on-the-go 
with Yahoo! Mail for Mobile. Get started.

[TMIC] Hi, I sent you an e-card from AOL Greetings.

[[EMAIL PROTECTED]]

Greetings!

We are writing to let you know that [EMAIL PROTECTED] has sent you the 
following e-card from AOL Greetings.

To view your e-card, please click on the following link:

http://greetings.aol.com/view.pd?i=89671268&m=7494&rr=y&source=aold999

Or, if your email program does not recognize the above address as a link, just 
copy and paste the link into your web browser's "address" window.

We hope you enjoy your e-card!

Please visit us again soon. Go to: http://greetings.aol.com or AOL Keyword: 
Greetings.

The AOL Greetings Team

Re: [TMIC] Hi...I'm Baaack

[Jenna Stentz]

Hey Jude...glad you are back.  I always like reading your e-mails..good luck 
with that chair...Jenna
  

[EMAIL PROTECTED] wrote:
  Hey All...
   
  I missed you too much to stay away.  I have been up spending time learning to 
drive and operate my new wheelchair.  It does everything but stand up, but I 
didn't qualify for that one because of the brittle bones.
   
  Not one of you has sent me their story.  How am I going to have something to 
do to take my mind off of the TM with nothing to do?
   
  I love you all and hey...I don't know if you have heard this already, but 
Grace is alive and well (as can be expected) and not beyond help, as some of us 
have heard.  I was  very happy to hear that good news.  One thing I don't know 
is her new email address in order to send her a card.  If someone will share it 
with me I will appreciate it to no end. 
   
  Love to All...
  Jude




-
  See what's free at AOL.com. 


   
-
Ahhh...imagining that irresistible "new car" smell?
 Check outnew cars at Yahoo! Autos.

[TMIC] Hi...I'm Baaack

[Heyjude48458]

Hey All...
 
I missed you too much to stay away.  I have  been up spending time learning 
to drive and operate my new wheelchair.  It  does everything but stand up, but 
I didn't qualify for that one because of the  brittle bones.
 
Not one of you has sent me their story.   How am I going to have something to 
do to take my mind off of the TM with  nothing to do?
 
I love you all and hey...I don't know if you  have heard this already, but 
Grace is alive and well (as can be expected)  and not beyond help, as some of 
us 
have heard.  I was  very happy  to hear that good news.  One thing I don't 
know is her new email address in  order to send her a card.  If someone will 
share it with me I will  appreciate it to no end. 
 
Love to All...
Jude



** See what's free at http://www.aol.com.

Re: [TMIC] Hi all

[ceckenberg]

Natalie!  I was off too, for awhile, but am so glad to hear you are back! 
I sure hope your medical condition gets understood, and quickly!  I hear
that the JHMI is working on helping a collaborative organization get
started: they are wanting all kinds of medical and research organizations
to join, so that there will be sharing of more and more information. 
Maybe your area might get in to that and you will find yourself receiving
just exactly what you need!  At least that is my prayer!
Cora

> Hi,
> I have not been on the list for a long time. I resubscribed, but I have
> not received any list mail. So, I am sending this as a test.
>
> I had a brain and spinal mri last August. Found out at that time my spine
> was a wreck, but only found out last month that my brain is also not the
> best. Docs do not think I have ms, but it may be early demyelating disease
> or lupus or lymes or vasculitis. I still have the lesion at t9, but it is
> now described as a hemangioma - read they are no big deal, but can cause
> pain if from some injury. Really do not know what is going on and am
> waiting for a referral to a more expert specialist. The neuro I was going
> to feels she cannot handle my case. It is difficult for me to find a way
> to get to Johns Hopkins, so I will have to go to Hershey Med Center. They
> are the ones who said I was ok. :0  I will try to go to a different doctor
> there. Our area has few neuros. And, actually I have seen more than a few
> of them already.
> Natalie Boyles

[TMIC] TMIC: Hi all

[Natalie Boyles]

Hi,
I have not been on the list for a long time. I 
resubscribed, but I have not received any list mail. So, I am 
sending this as a test.
 
I had a brain and spinal mri last August. Found 
out at that time my spine was a wreck, but only found out last month that my 
brain is also not the best. Docs do not think I have ms, but it may be early 
demyelating disease or lupus or lymes or vasculitis. I still have the lesion at 
t9, but it is now described as a hemangioma - read they are no big deal, but can 
cause pain if from some injury. Really do not know what is going on and am 
waiting for a referral to a more expert specialist. The neuro I was going to 
feels she cannot handle my case. It is difficult for me to find a way to get to 
Johns Hopkins, so I will have to go to Hershey Med Center. They are the ones who 
said I was ok. :0  I will try to go to a different doctor there. Our area 
has few neuros. And, actually I have seen more than a few of them 
already.
Natalie 
Boyles

[TMIC] Hi Everyone

[DEBI WALL]

I'm just changing my email address againsorry LOL     Debi Wall  T4 Spastic paraplegicDebi     [EMAIL PROTECTED]      If God wanted us to be thin..he wouldn't have invented Chocolate
		Blab-away for as little as 1¢/min. Make  PC-to-Phone Calls using Yahoo! Messenger with Voice.

Re: [TMIC] Hi,

[FHargr3092]

CONGRATULATIONS!!  Tell her to keep up the good work.we're pulling for
all of you!  janh

[TMIC] Hi,

[Judy Baker]

Hi,

I have been off of the list for quite some time. My daughter Lisa got 
transverse myelitis ten years ago. She is a paparaplegic. She is currently 
getting heavy duty physical therapy and is seeing lots of improvements. She has 
movement in her hips and is now able to tell when her bladder is full. She had 
a doctor visit this past Monday and she is able to move her ankles slightly and 
also her big toes. I am very excited. I wanted to let you know that even after 
ten years things regenerated and the impossible can happen. Keep the faith and 
keep exercising.

Judy

[TMIC] Hi from Nima

[Poonam Mahadev Thapa]

Hi Everyone 
Thanks for the warm welcome on the list and all the 
concern shown. It has helped me a lot in sorting myself out. Dev, my 
hubby is in India and I needed to make myself rid of all the heaviness and 
your emails have helped. He is a fighter and I have always been strong for him. 
Now I feel Iam ready to welcome him back with renewed strength.
At last I have some news and questions 
again.   Dev's MRI of spine was clear, but that of the brain had 
a few more hyperintense areas in the frontoparietal lobes bilaterally as 
compared to his June MRI. The Neuro here in Nairobi, Kenya wondered if it 
was MS? or Relapse of TM? plus diagnosed predominantly ocular myasthenia 
currently quiescent. This sent us into a flurry hence Dev had to go to India in 
a rush. He went to to the Pune Institute of Neurology,  India.
 
Dev went through VEP and ERM tests in India to check if 
there was any demyelination of the nerves and the results showed none, which was 
a great relief. The MS was also ruled out.
 
His Kidney function and bladder was also clear. He did 
urodynamics today and will discuss that with the urologist on 
Monday.
 
However his infections have left him quite weak in the 
legs. He uses a walking stick and walking a few steps around the house is a 
struggle. This is quite a downward regression from what he could manage in 
July.
 
The Neuro reckons its cause is increased spasticity so he 
has to take Baclofen along with Tizanidine. He is doing 
physiotherapy as well. The necessity of Baclofen overrules the side effects at 
the moment. He has given him something to take care of the fatigue but he is 
told to do Yoga and meditation for the confusion and muzziness bit of side 
effects.
 
The doctor refused to give him any steroids. He says they 
only prescribe them if there is demyelination of nerves. Our concern is he is so weak already then Baclofen and regular 
exercises twice a day that he does would make him more fatigued and 
that is something to be avoided. 
 
What does one do to counter the weakness??  
Doesn't one take steroids to boost up the energy lost??? Is the doctor 
right in not prescribing the Prednisolone? When he had made good recovery 
initially was it only because of steroids? He took them from Nov 2004 at the 
onset of TM and uptil end of Jan 2005 as pills 1 mg and then just once a week 
intravenous 1mg till end of Feb 2005. Then none but his progress had continued 
till July until he got the fever from urine infection.
 
Any suggestions- do you get steroids prescribed if 
you are too weak or not?
 
Also this banding everyone has been mentioning is there 
medication for that as well? I guess that is what he was feeling when he 
said his left leg seemed as if someone had tied it up.
 
Today I pray
May the angels protect you
May the sadness forget you
May happiness surround you 
May God be with you
 
Lucky with friends here in Mombasa Kenya
Nima
 
 
 
 
 

Re: [TMIC] Hi Everyone

[cherpent]

Hi Everyone,
 
Yep, I am exactly the same way. Bite off more than I can chew. Before TM I did everything - very active - this fatigue has to be one of the hardest parts of TM for me.  My mind tells me "yes - go for it"  my body has ideas of its own.  Therefore, I have half-done things all the time - and let me tell you, I'm one of those people who could never tolerate that before!!  Life does change that's for sure. Naps are the only thing that keep me half-way sane.
 
Blessings to all
Linda in Bothell, WA
 
-- Original message -- From: "Lynn Pouliot" <[EMAIL PROTECTED]> 



Hi Everyone,
 
I too get up feeling like I can do anything.  I always start some sort of project ( cleaning house, clearing out a closet, decorating) and soon realize I "bit off more than I can chew" I tire so easily.  Hence, I always have half of things completed.  And a bigger mess than I sarted with.  Oh well,  I am starting to learn how much I can do before I get tired.   Resting usually restores most of my energy, but not all.
 
Lynn P. in Frigid RI

- Original Message - 
From: Heather & Pieter 
To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; tmic-list@eskimo.com 
Sent: Tuesday, December 13, 2005 1:08 PM
Subject: Re: [TMIC] Hi Everyone

Hi there,
I have not met Harriet but  want to thank her for her ideas and upbeat feelings as well.  She hit the nail on the head when she said that we can tend to feel our body image failing with clunky shoes, heavy limbs and in my case as one of the walking wounded - feeling like an invalid (when I'm not really - in my mind anyway). I hope to get my driver licence back soon when I am approved by the Driver Fitness and Monitoring people to use a left foot accelorator.  Then I am hoping to go and try some water therapy at a lovely warm water swimming pool here in Calgary. I gave up the exercise classes a while back.  Just got tired of the trek there and back in the Handibus etc.  
 
janh,
You mention overdoing things at this time of year.  This is my 3rd Christmas now with TM.  I was hit by it Sept 2003.  This year we do not have friends living with us to help decorate (as we did in 2003), and we don't have my husband's daughter and granddaughter living with us to help out (as we did in 2004).  So overdoing it in the 'getting ready for the season' is not hard.  I am finding that when I first get up in the morning after a good nights rest I think that I can do 'anything' and do it quickly.  Of course once I start doing things I quickly become more tired (in my body from waist down where I am affected from T8 - T10) and my limbs become s heavy that I have to take frequent rests.  I am going to write a note in my 2006 calendar to start preparing for the season a whole lot earlier (like at the beginning of November) next year.  
 
Sorry to write so long a 'note'.  I am just musing this morning but should get in gear as my hubby and I have a little more Christmas shopping to do today and decorate the tree that has been standing in the living-room 'bare' since Saturday.  It is one of the fake trees with the lights already attached but looks kind of sad with no ornaments or garland. 
 
Bye now,
Heather in Calgary 

- Original Message - 
From: [EMAIL PROTECTED] 
To: [EMAIL PROTECTED] ; tmic-list@eskimo.com 
Sent: Tuesday, December 13, 2005 8:32 AM
Subject: Re: [TMIC] Hi Everyone
Harriet,It's so good to hear from you.and everything your shared was a positiveand an idea for some of us to pursue.It's great to hear you so upbeat!!Thanks for writing and keep us updated..this time of the year we need positive strokes as we're all so busy, and we can get down! so easily when we overdo.janh  Stiolwater OK 



No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.371 / Virus Database: 267.13.13/199 - Release Date: 12/13/2005

Re: [TMIC] Hi Everyone

[Lynn Pouliot]

Hi Everyone,
 
I too get up feeling like I can do anything.  
I always start some sort of project ( cleaning house, clearing out a closet, 
decorating) and soon realize I "bit off more than I can chew" I tire so 
easily.  Hence, I always have half of things completed.  And a bigger 
mess than I sarted with.  Oh well,  I am starting to learn how much I 
can do before I get tired.   Resting usually restores most of my 
energy, but not all.
 
Lynn P. in Frigid RI

  - Original Message - 
  From: 
  Heather 
  & Pieter 
  To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; tmic-list@eskimo.com 
  Sent: Tuesday, December 13, 2005 1:08 
  PM
  Subject: Re: [TMIC] Hi Everyone
  
  Hi there,
  I have not met Harriet but  want to thank 
  her for her ideas and upbeat feelings as well.  She hit the nail on the 
  head when she said that we can tend to feel our body image failing with clunky 
  shoes, heavy limbs and in my case as one of the walking wounded - feeling like 
  an invalid (when I'm not really - in my mind anyway). I hope to get my driver 
  licence back soon when I am approved by the Driver Fitness and Monitoring 
  people to use a left foot accelorator.  Then I am hoping to go and try 
  some water therapy at a lovely warm water swimming pool here in Calgary. I 
  gave up the exercise classes a while back.  Just got tired of the trek 
  there and back in the Handibus etc.  
   
  janh,
  You mention overdoing things at this time of 
  year.  This is my 3rd Christmas now with TM.  I was hit by it Sept 
  2003.  This year we do not have friends living with us to help decorate 
  (as we did in 2003), and we don't have my husband's daughter and granddaughter 
  living with us to help out (as we did in 2004).  So overdoing it in the 
  'getting ready for the season' is not hard.  I am finding that when I 
  first get up in the morning after a good nights rest I think that I can do 
  'anything' and do it quickly.  Of course once I start doing things I 
  quickly become more tired (in my body from waist down where I am affected from 
  T8 - T10) and my limbs become s heavy that I have to take frequent 
  rests.  I am going to write a note in my 2006 calendar to start preparing 
  for the season a whole lot earlier (like at the beginning of November) next 
  year.  
   
  Sorry to write so long a 'note'.  I am just 
  musing this morning but should get in gear as my hubby and I have a little 
  more Christmas shopping to do today and decorate the tree that has been 
  standing in the living-room 'bare' since Saturday.  It is one of the fake 
  trees with the lights already attached but looks kind of sad with no ornaments 
  or garland. 
   
  Bye now,
  Heather in Calgary 
  
- Original Message - 
From: 
[EMAIL PROTECTED] 
To: [EMAIL PROTECTED] ; tmic-list@eskimo.com 
    Sent: Tuesday, December 13, 2005 8:32 
AM
Subject: Re: [TMIC] Hi Everyone
Harriet,It's so good to hear from 
you.and everything your shared was a positiveand an idea for 
some of us to pursue.It's great to hear you so 
upbeat!!Thanks for writing and keep us updated..this time of the 
year we need positive strokes as we're all so busy, and we can get down! so 
easily when we overdo.janh  Stiolwater OK 



No virus found in this incoming message.Checked by AVG Free 
Edition.Version: 7.1.371 / Virus Database: 267.13.13/199 - Release Date: 
12/13/2005

Re: [TMIC] Hi Everyone

[Michael Carroll]

Harriet,
I am happy to hear you found the Merrill 
shoes.  I have had TM for 9 years and Merrill shoes are the only shoes I 
can wear.  They are available in wide sizes on some web sites.  It is 
the only shoe that does not irritate my toes and increase the pain levels in my 
feet.  They are available in men's and women's styles.  I know you 
will want more than one pair once you wear the ones you purchased.  Just be 
certain to buy the wide sizes.  The
standard sizes, although they are roomy, 
don't give you as much comfort as the wide sizes.  I have purchased them on 
several websites, the last one being www.footsmart.com
 
Michael

  - Original Message - 
  From: 
  Harriet 
  Schlacht 
  To: tmic-list@eskimo.com 
  Sent: Tuesday, December 13, 2005 7:56 
  AM
  Subject: [TMIC] Hi Everyone
  
  Dear Everyone,
   
  I've not written in in ages, and want to share some things that have been 
  working (and not) for me, in the hopes that I can give some of you ideas you 
  may not previously have considered.
   
  Recap first - I came down with TM about 2+ yrs. ago T5,6 region. I can 
  walk now yes and have been for a while, but I still have extreme pressure 
  "bands" (forgive me I forget the med. terminology - parathesis? you get the 
  idea I'm sure (-:); have the extremely cold feet symptom and 
  subsequently dread the winter, diminished sensation on the left side of 
  my body from the chest down to my toes, probs with constapation - but most 
  significant, was the debilitating fatigue. I can't wait to 
  tell you what's been working for me. Forgive me if it's been brought up, it is 
  4 am and I don't have time to do a search in the archive on this. VITAMIN B 
  MONTHLY SHOTS + daily capsules. But the shot is the main thing. 
  I have noticed such an extreme difference with this - how should I 
  put it? I feel so much more alive (funny thing, energy...).  I have been 
  doing water therapy when my arms get sooo heavy that I have to get out of the 
  pool and call it quits. I realize that I'm a day or so over a month 
  without the shot. I dress and get myself over to the doctor (internist), he 
  gives me the shot and literally, over night I am energized. Maybe pple. w/out 
  TM would benefit from this, but I wanted so much to share this with you all 
  first. 
   
  Shoes - my constant quest for warm, stylish shoes that 
  won't squeeze the metatarsel bones, that are soft on the inside. I found 
  them!! 
  Merrills - maybe they are a new style, but there are nubuck leather on 
  the outside, lined with sheerling wool ( I believe) on the inside and are not 
  officially a wide width but as they run wide they fit. I also have plantar 
  fasciatis and in general my feet cause me pain, but I am hopeful with this 
  shoe as it also has a decent arch and can take orthodics. Still on the hunt 
  for a boot that meets these requirements. Anyone with leads I'd love to hear! 
  
   
  Lastly, lidocane patches or Elmax 
  (lidocane cream). I've been using the patches, haven't yet tried 
  the cream. These patches numb feet that are hypersensitive. You can use 
  them whenever, but I use them when I have been standing on my feet, busy in 
  the kitchen, for example and they are heaven, a bit tingly, but hey, we know 
  about that (-: These are nice. 
   
  Exercise - To those of you who encouraged me to exercise 
  a few mo. back.. thank you. I wrote in with a healthy dose of self pity - 
  (what's the point, I can't feel much anyway etc.) I thought b/c I had 
  sensation issues that - my body didn't matter so to speak - well, I've 
  pushed past those thoughts and feelings and while it hasn't changed the 
  physical from the inside - out, at least I am getting back to a decently 
  "sexy" size.  Again, I have no idea if anyone's commented on this, but I 
  feel that TM can mess with out body image (heavy feelings in limbs, clunky 
  shoes etc, though these can be stylish if we look hard, if we're lucky, see 
  shoe recommendation above) and being in good shape can only help. 
   
  that's all folks,
  I'd love to hear back from anyone who remembers me.. again, I thank you 
  all for your continued support and encouragement - my cyber angels - and I 
  hope that my solutions can help some/any of you out there; I am excited to 
  share them with you - esp. the vitimin B shots. 
   
  take care,
  Harriet

Re: [TMIC] Hi Everyone

[Heather & Pieter]

Yes Jan, I agree.  We seem to have several 
social things to do these days too and I'm pooped by the time we get home.  
Naps are good.  
 
Heather in Calgary 
 

  - Original Message - 
  From: 
  [EMAIL PROTECTED] 
  To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; tmic-list@eskimo.com 
  Sent: Tuesday, December 13, 2005 11:26 
  AM
  Subject: Re: [TMIC] Hi Everyone
  I, too, get up thinking I can take on the 
  world, only to be brought back to earth and my couch more rapidly than I 
  like!!  I've learned to let things go that aren't absolutely necessary in 
  our lives..and still continue to rest to store up energy to continue 
  our social activities.After all, Frank has enough burden on his shoulders just 
  taking care of my needs without stopping the rest of his life!!Take 
  care, jan 
  
  

  No virus found in this incoming message.Checked by AVG Free 
  Edition.Version: 7.1.371 / Virus Database: 267.13.13/199 - Release Date: 
  12/13/2005

Re: [TMIC] Hi Everyone

[Heather & Pieter]

Hi there,
I have not met Harriet but  want to thank her 
for her ideas and upbeat feelings as well.  She hit the nail on the head 
when she said that we can tend to feel our body image failing with clunky shoes, 
heavy limbs and in my case as one of the walking wounded - feeling like an 
invalid (when I'm not really - in my mind anyway). I hope to get my driver 
licence back soon when I am approved by the Driver Fitness and Monitoring people 
to use a left foot accelorator.  Then I am hoping to go and try some water 
therapy at a lovely warm water swimming pool here in Calgary. I gave up the 
exercise classes a while back.  Just got tired of the trek there and back 
in the Handibus etc.  
 
janh,
You mention overdoing things at this time of 
year.  This is my 3rd Christmas now with TM.  I was hit by it Sept 
2003.  This year we do not have friends living with us to help decorate (as 
we did in 2003), and we don't have my husband's daughter and granddaughter 
living with us to help out (as we did in 2004).  So overdoing it in the 
'getting ready for the season' is not hard.  I am finding that when I first 
get up in the morning after a good nights rest I think that I can do 'anything' 
and do it quickly.  Of course once I start doing things I quickly become 
more tired (in my body from waist down where I am affected from T8 - T10) and my 
limbs become s heavy that I have to take frequent rests.  I am going to 
write a note in my 2006 calendar to start preparing for the season a whole lot 
earlier (like at the beginning of November) next year.  
 
Sorry to write so long a 'note'.  I am just 
musing this morning but should get in gear as my hubby and I have a little more 
Christmas shopping to do today and decorate the tree that has been standing in 
the living-room 'bare' since Saturday.  It is one of the fake trees with 
the lights already attached but looks kind of sad with no ornaments or garland. 

 
Bye now,
Heather in Calgary 

  - Original Message - 
  From: 
  [EMAIL PROTECTED] 
  To: [EMAIL PROTECTED] ; tmic-list@eskimo.com 
  Sent: Tuesday, December 13, 2005 8:32 
  AM
  Subject: Re: [TMIC] Hi Everyone
  Harriet,It's so good to hear from 
  you.and everything your shared was a positiveand an idea for 
  some of us to pursue.It's great to hear you so 
  upbeat!!Thanks for writing and keep us updated..this time of the year 
  we need positive strokes as we're all so busy, and we can get down! so easily 
  when we overdo.janh  Stiolwater OK 
  
  

  No virus found in this incoming message.Checked by AVG Free 
  Edition.Version: 7.1.371 / Virus Database: 267.13.13/199 - Release Date: 
  12/13/2005

Re: [TMIC] Hi Everyone

[FHargr3092]

I, too, get up thinking I can take on the world, only to be brought back to earth and my couch more rapidly than I like!!  I've learned to let things go that aren't absolutely necessary in our lives..and still continue to rest to store up energy to continue our social activities.After all, Frank has enough burden on his shoulders just taking care of my needs without stopping the rest of his life!!

Take care, jan

Re: [TMIC] Hi Everyone

[FHargr3092]

Harriet,

It's so good to hear from you.and everything your shared was a positive
and an idea for some of us to pursue.

It's great to hear you so upbeat!!

Thanks for writing and keep us updated..this time of the year we need positive strokes as we're all so busy, and we can get down! so easily when we overdo.

janh  Stiolwater OK

[TMIC] Hi Everyone

[Harriet Schlacht]

Dear Everyone,
 
I've not written in in ages, and want to share some things that have been working (and not) for me, in the hopes that I can give some of you ideas you may not previously have considered.
 
Recap first - I came down with TM about 2+ yrs. ago T5,6 region. I can walk now yes and have been for a while, but I still have extreme pressure "bands" (forgive me I forget the med. terminology - parathesis? you get the idea I'm sure (-:); have the extremely cold feet symptom and subsequently dread the winter, diminished sensation on the left side of my body from the chest down to my toes, probs with constapation - but most significant, was the debilitating 
fatigue. I can't wait to tell you what's been working for me. Forgive me if it's been brought up, it is 4 am and I don't have time to do a search in the archive on this. VITAMIN B MONTHLY SHOTS + daily capsules. But the shot is the main thing. 

I have noticed such an extreme difference with this - how should I put it? I feel so much more alive (funny thing, energy...).  I have been doing water therapy when my arms get sooo heavy that I have to get out of the pool and call it quits. I realize that I'm a day or so over a month without the shot. I dress and get myself over to the doctor (internist), he gives me the shot and literally, over night I am energized. Maybe pple. w/out TM would benefit from this, but I wanted so much to share this with you all first. 

 
Shoes - my constant quest for warm, stylish shoes that won't squeeze the metatarsel bones, that are soft on the inside. I found them!! 
Merrills - maybe they are a new style, but there are nubuck leather on the outside, lined with sheerling wool ( I believe) on the inside and are not officially a wide width but as they run wide they fit. I also have plantar fasciatis and in general my feet cause me pain, but I am hopeful with this shoe as it also has a decent arch and can take orthodics. Still on the hunt for a boot that meets these requirements. Anyone with leads I'd love to hear! 

 
Lastly, lidocane patches or Elmax (lidocane cream). I've been using the patches, haven't yet tried the cream. These patches numb feet that are hypersensitive. You can use them whenever, but I use them when I have been standing on my feet, busy in the kitchen, for example and they are heaven, a bit tingly, but hey, we know about that (-: These are nice. 

 
Exercise - To those of you who encouraged me to exercise a few mo. back.. thank you. I wrote in with a healthy dose of self pity - (what's the point, I can't feel much anyway etc.) I thought b/c I had sensation issues that - my body didn't matter so to speak - well, I've pushed past those thoughts and feelings and while it hasn't changed the physical from the inside - out, at least I am getting back to a decently "sexy" size.  Again, I have no idea if anyone's commented on this, but I feel that TM can mess with out body image (heavy feelings in limbs, clunky shoes etc, though these can be stylish if we look hard, if we're lucky, see shoe recommendation above) and being in good shape can only help. 

 
that's all folks,
I'd love to hear back from anyone who remembers me.. again, I thank you all for your continued support and encouragement - my cyber angels - and I hope that my solutions can help some/any of you out there; I am excited to share them with you - esp. the vitimin B shots. 

 
take care,
Harriet

[TMIC] Hi Gina/TM

[Grace]

Hi Gina,
My emails to the list also often come back as 
undeliverable, so what I do is either resend them as forwards, or send them as a 
carbon copy to the list.  I've heard several others mention this problem 
also.
 
I'm so sorry to hear of your husband's recent 
diagnosis.  What point is he at re: recovery?  Is he able to 
ambulate?   Regarding SSI, I too am in that process.  Currently I 
am receiving temporary SSI and Medicaid for a period of up to six months while 
they do final deliberations re: my case.  Of course, I am already preparing 
to appeal.  It can be a very long and drawn out process, but just hang in 
there and don't give up.  Does your husband have a caseworker or advocate 
to help him through the process?  During my appeal process, I plan to have 
legal representation to guide me through the sticky aspects.  Sometimes I 
wonder how much sicker I have to get before someone will help me.  Bob 
recently gave me some very good advice re: the whole SSI process.  If you 
like, I can forward it to you.
 
Sincerely,
[EMAIL PROTECTED]