RE: [TMIC]

[Margaret Monson]

And now my turn. . .

My name is Margaret and I live in Edmonton Alberta Canada.  I was 40 years old 
when I was diagnosed in April 2001.

My TM is not nearly as severe or bad as many others.  I am one of the walking 
wounded.  

I woke up on a Saturday morning and had a dull ache in my right elbow.  Carried 
on through the day only to wake up on Sunday with tingling hands.  I went to 
work at my part time job at a coffee shop and all through the day I kept 
wringing my hands to try to get the tingling to stop.  I didn't think much of 
it until my boss asked me what was wrong and I told him about the tingling.  He 
was concerned that I may be having a stroke.  I laughed it off but it stayed in 
the back of my mind.

So I went home and started searching for answers on the internet.  I read about 
TM and all my symptoms seemed to point to TM with the exception that I hadn't 
been sick or had a virus for at least the last 4 years.  My husband at the time 
told me that if it was still there on Monday, I needed to see my doctor.  

Monday morning I awoke and the tingling hands were still there and now my feet 
were tingling.  I went to work and made an appointment to see my family doctor 
that afternoon.  Off to the doctor I went.  She was totally dumbfounded and 
said she would get me in to a Neurologist.  She left the office and I figured 
"Okay, I'll see the Neuro in a few months."  When my GP came in she had an 
appointment for me the next day!  

Tuesday I woke up and my hands and feet were tingling and now my legs were too. 
 I couldn't hold a pen without having a death grip on it!  I could barely write 
my name because I couldn't feel the pen.  I went to work for the morning and 
then went to the Neuro in the afternoon.  She asked many questions, did many 
coordination tests and pin prick tests and decided that I had either TM or MS.  
She was going to book me for blood tests and a MRI.  She was sure it was TM and 
told me all the nasty things that I had read . . . that TM is usually a 
precursor to MS, I would never be 100% again and it was going to get worse.  
WOW!  Un-freaking-believable!  How the heck did I get something like this???

Wednesday came and I went to work.  I was trying to come to grips with what the 
doctor told me and I think I was trying to convince myself that she was wrong 
and that it was just a pinched nerve.  All along, I am getting worse.  The 
tingles are crawling their way up my body.  When I had to run to catch the bus, 
I felt like there was this elastic band around my torso tightening itself as if 
to choke me.

Thursday, reality hit with a vengeance and I realized the severity of what I 
had contracted and what it meant to me and the rest of my life.  I spent the 
day in bed mentally and emotionally exhausted.  It really struck home when my 
husband was standing at the side of the bed and my 90 pound dog was sitting on 
me and he told her to get off me.  I told him she wasn't on me and when I 
looked I saw she was literally sitting on me and I could not feel her.  It was 
then that I realized just how bad I was.  It was also then that I realized I 
could do one of two things - I could lay there and feel sorry for myself and 
give in to this thing or I could fight it and get out of bed and try to keep 
going with all that I had.  I got out of bed.

Within six weeks it hit the worse and then slowly started to get better.  At 
it's worse, I was numb from the armpits down.  My arms were always okay but my 
hands always tingled.  My feet were numb and I had a hard time walking because 
I couldn't feel what was under them.  I had to watch my step so that I would 
catch the edge of a side walk or curb and end up twisting my ankle.

One Sunday I was making a roast and was draining the dripping into a pot when 
the pan slipped out of my hands and hit the stove.  I didn't realize it but I 
had splashed the hot liquid on my tummy and ended up with a second degree burn. 
 I didn't feel a thing and didn't have a clue what I had done until a 6 inch 
long blister developed on my tummy the next day!  Another realization!  

I eventually started to see my symptoms get better and over 3 years I "healed" 
the best that I could and ever would.  I still don't have all the feeling in my 
hands.  Because of that I have had to give up needlework like cross stitch.  I 
find it difficult to fasten necklaces or buttons or deal with small things.  I 
still get the tight elastic band feeling if I run or jog.  I cannot over do it 
or get stressed because then I get tired and the tingles hit with a vengeance.  
I find it hard to walk fast or for long distances without many breaks.  When I 
bend my head and then lift it up, I get the tingles and a wave of nausea.  When 
I do push it and the tingles hit, I get nauseous.

My life has changed and I have had to give up many things.  But my attitude and 
my outlook has changed for the better.  I don't sweat the small stuff any more. 
 I have more patience.  

Re: Fw: [TMIC]

[kimr1999]

My turn
My name is Kim Harrison

I live in Atlanta, GA and was 45 in 04 when I got TM. I was on a business trip to Dallas, TX when I was stricken with this disease. I went out Sept 4th, 2004 and was to only be there a week. I was scheduled to come home to GA on Oct 8th, almost made it home. 
 
I got up the morning  of October 6th and my right foot was asleep and tingled, I keep taping my foot on the floor to wake it up. I figured I slept wrong and pinched a nerve by 9:00am I could not walk at all the tingling had move up past my knee cap and when I tried to walk I kept walking into walls and falling down. The crew there keep telling me to go to ER, and I just laughed at them, for my foot being asleep, please!, well my 10:00 I can't walk at all and was carried to a car and off to the ready care.  Doctor there did a few quick tests and sent me straight to the ER. (He thought I was having a stroke). When we got to the ER 5 miles away they were waiting outside for me. I kept laughing that they offered curb side service. They rushed me to a room and there started the "Barrage of Test" by 3:00pm  I had 2 MRI’s, 3 CAT scans ER Doctors are totally baffled can quote from the ER Doctor was “We can not figure out what is wrong with you and have never seen anyone present in the ER with such rapid case of paralysis. Now the "tingling" and paralysis has moved up past my thigh, and I can no longer move my right leg at all, not even wiggle my toe!
I was admitted to the hospital, by now my husband back in Atlanta is totally freaking out and I am still making light of the whole situation. Lucky for me I had family close by and some one was with me until my company few my husband Brian out. When I woke up the next day my left foot started to tingle and I knew at that point something was really wrong. It took the neurologist until Monday 5 days latter to finally tell me I have Transverse Myelits which mean nothing to me, as far as I understood when we left he very well could have told me I had cooties and it meant the same. After all the test it was the doctors labeled my onset of TM as Idiopathic, to this day they can not tell me how I got this.
 
I was in the hospital a little over a week and then moved to a rehab faculty next to the hosp (more like old folks home) I was the young kid there at 45 years old, I was in patient rehab for a week and finally sent back home to GA. I went back to work a month after getting out of the hospital. 
I use my walker around the house and wheel chair in public. My right leg still drags like I've had a stroke; the "banding" pain around my waist and the burning in my feet would be my two primary issues with this. I can not wear pants unless they have elastic so I can pull them up over my belly button due to the banding pain, I also can no longer wear shoes, socks even hurt my feet due to the burning and stinging in my feet. This makes it hard to use my AFO's because I can't take shoes on my feet.
 
It is so hard to explain to people that I in no way saw this coming. That I got up one morning and with in 8 hours I was paralyzed. But life does go on and it’s just the adjustment we all have to learn to deal with daily regardless if you have TM or any other medical condition. You work and live life with has been dealt to you in the most positive way you can.
 
Kim Harrison
Atlanta, GA
-- Original message from "Janice" : -- > I am going to tell my story because I feel "odd man out"! Also because > you all have already been so giving and including of me. I thank you so > much. > The 2nd week in January, 2007, I had weakness in my legs. I did water > aerobics, so thought I was exercising too hard. By Saturday, the 13th, my > legs collapsed and my husband got me to the ER. I never had the striking > pain so many of you talk about when myelitis first hits. During the 1st > week in the hospital I was a Code Blue because the catheter gave me an > infection and it went systemic. After that my body just kind of fell > apart. I developed a "bleeder" in the colon and they almost didn't find > it soon enough. After colon surgery I was kept in a "sleep" state for 3 > days. My family had no idea if I would survive. Every 3rd day after that > something else happened to my body. My doctors would not leave town. I > spent 9 weeks in the hospital, part in rehab, and needed 19 ppints of blood. > I have a colostomy and still have some trouble with my bladder. I self > cath twice a day. But, if you would see me today sitting down, you would > think I was the picture of health. I use a cane to walk and because of > the feeling in my legs coming back with nerve pain, I have a stimulator > implanted in my back. It helps cover the pain. I have a > wonderful husband, my hero, and a loving daughter, son-in-law, and 4-year > old grandson. We have many really good friends that have never left my > side and we do many social things - love that! Well, that is my story. > Hoping to

Fw: [TMIC]

[Janice]

I am going to tell my story because I feel "odd man out"!Also because 
you all have already been so giving and including of me.   I thank you so 
much.
The 2nd week in January, 2007, I had weakness in my legs.   I did water 
aerobics, so thought I was exercising too hard.  By Saturday, the 13th, my 
legs collapsed and my husband got me to the ER.  I never had the striking 
pain so many of you talk about when myelitis first hits.During the 1st 
week in the hospital I was a Code Blue because the catheter gave me an 
infection and it went systemic.   After that my body just kind of fell 
apart.I developed a "bleeder" in the colon and they almost didn't find 
it soon enough.   After colon surgery I was kept in a "sleep" state for 3 
days.  My family had no idea if I would survive.  Every 3rd day after that 
something else happened to my body.  My doctors would not leave town.   I 
spent 9 weeks in the hospital, part in rehab, and needed 19 ppints of blood. 
I have a colostomy and still have some trouble with my bladder.   I self 
cath twice a day. But, if you would see me today sitting down, you would 
think I was the picture of health.I use a cane to walk and because of 
the feeling in my legs coming back with nerve pain, I have a stimulator 
implanted in my back.   It helps cover the pain.  I have a 
wonderful husband, my hero, and a loving daughter, son-in-law, and 4-year 
old grandson. We have many really good friends that have never left my 
side and we do many social things - love that!Well, that is my story. 
Hoping to get to know all of you.



- Original Message - 
From: 

To: "Janice" 
Sent: Friday, March 06, 2009 7:23 PM
Subject: Re: [TMIC]



Hi Janice
I just turned 59 a week ago.  TM hit me 5.25 years ago when I was 53.  My 
lesion was at C4 thru C6 level and it affected me from the chest down, 
however, you wouldn't know it looking at me when I'm sitting down.  I use 
a cane to walk and have an ankle foot orthotic (AFO) that I seldom wear 
due to my burning feet.  Most of my body has the searing/burning pain.  My 
right side still shows some signs of the original paralysis and I type 
with one finger and thumb on each hand.
I worked full-time as a bank manager until the Wednesday I went to work 
and tried to work thru various muscle spasms.  I went home at 2:30, went 
to ER and that was the end of my "career".  There were times I truly 
thought I was loosing my mind and will never know if it was the 
medications I took or the stress of TM.  TM gave me some bowel and bladder 
problems, but I only wear a heavy duty panty-liner now.  So I'm doing well 
compared to some on the website.  Some of us have shared some real 
personal info in order to help others understand TM.

Don't be afraid to ask or share - it's the way we help each other.

Patti - Michigan

 Janice  wrote:
I am anxious to get to know everybody and hear about their "stories" and 
how

they are doing.
- Original Message - 
From: 

To: "Janice" ; "transverse myelitis"

Sent: Wednesday, March 04, 2009 7:30 PM
Subject: Re: [TMIC]


> You reached the TM internet club site.  Welcome to a great bunch of 
> people

> who are eager to help each other with questions and answers regarding
> Tranverse Myelitis.
>
> Patti - Michigan
>  Janice  wrote:
>> This is a test for correctness of address.Please reply.
>
>

Fw: [TMIC] Re: Prayers for You

[Janice]

This is Janice writing to you again. I, too, pay a price the next day when 
I overdo.   The doctors have really warned me about that.Hope you are 
really doing well now.

- Original Message - 
From: jrushton 
To: Patricia Cooley ; tmic 
Sent: Friday, March 06, 2009 2:26 PM
Subject: [TMIC] Re: Prayers for You



   Thank you all so much for the prayers and you know how I feel about 
them!!!  I woke again this AM with the same symptoms , too stubborn to even 
call my provider (if any of you about read my nightmare on the day I got TM??) 
so I rested for a couple hours and the pain has eased some so I'm hoping it was 
because I just walked too much.  Oh, I do so believe in the prayers and 
miracles..  Love to you all..Jeanne
  ---Original Message---

  From: Patricia Cooley
  Date: 3/6/2009 11:54:31 AM
  To: 'jrushton'
  Subject: Prayers for You

  Jeanne:



  I just read your message about your return of symptoms.  Please be sure 
we are all praying for you.  Try to keep the faith.  I hope your symptoms 
subside soon and you are back to where you were and even better.  I have you in 
my prayer basket.  Please keep us informed on your condition.



  God Bless!



  Patti - Wisconsin

 
 
 
<>

Re: [TMIC] Computer Ignorance

[Trudy Ogilvie]

Greetings and welcome to the TM website.
My name is Trudy I live in Northern Virginia and am 62 yrs. young! TM hit me
7 years ago at the C5-6 level. It was decided 2 yrs ago that I have MS so I
take MS med every day. This is a great "family" to belong to if you have TM
or really any autoimmune disease. I walk with a walker because balance is a
definite issue with me.
You can ask as many questions as you wish, even the embarrassing ones! We've
all been there.
There are members of this website who are very knowledgeable and up to date
on what's going on in the autoimmune world so don't hesitate to ask.
again Welcome!!
Trudy


On Thu, Mar 5, 2009 at 8:40 PM, Janice  wrote:

>  I want to thank you all for responding to my email.   I feel
> included. How can I begin to learn about you all and what you have been
> through? Do I just ask you to email me (if you wish to) and we can chat
> or is there another way it is done?   You can tell
> my lack of computer savvy with how things are done!   If someone has
> the time, I would appreciate a little more info on how this is
> done. Also, is it rude to ask ages of you all?   I am 62 and have had
> this for 2 years.Thanks guys.
>

[TMIC] Re: Prayers for You

[jrushton]

 
 Thank you all so much for the prayers and you know how I feel about them!!!
 I woke again this AM with the same symptoms , too stubborn to even call my
provider (if any of you about read my nightmare on the day I got TM??) so I
rested for a couple hours and the pain has eased some so I'm hoping it was
because I just walked too much.  Oh, I do so believe in the prayers and
miracles..  Love to you all..Jeanne
---Original Message---
 
From: Patricia Cooley
Date: 3/6/2009 11:54:31 AM
To: 'jrushton'
Subject: Prayers for You
 
Jeanne:
 
I just read your message about your return of symptoms.  Please be sure we
are all praying for you.  Try to keep the faith.  I hope your symptoms
subside soon and you are back to where you were and even better.  I have you
in my prayer basket.  Please keep us informed on your condition.
 
God Bless!
 
Patti - Wisconsin
 <>

[TMIC] FW: Hey Rob from Cuz Rita; see below (hope all is well..)

[Robert Pall]

fyi:
 
Rob in New Jersey



From: Grubman, Rita [mailto:rgrub...@gjb-law.com] 
Sent: Friday, March 06, 2009 4:21 PM
To: Robert Pall
Subject: Hey Rob from Cuz Rita; see below (hope all is well..)


Source: Obama To Reverse Stem Cell Funding Policy A source says
President Barack Obama on Monday will reverse restrictions on federal
funding of stem cell research.

MORE DETAILS:  >

 

 
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Thank you.

 

Re: [TMIC] Asking for prayers...

[Catherine]

Jeanne,

My thoughts and prayers are with you.  I pray that you have not received 
anymore damage ...  please if you are in doubt as to what happened, please call 
your doctor.

God Bless You,

 Catherine






From: jrushton 
To: tmic 
Sent: Thursday, March 5, 2009 10:51:19 PM
Subject: [TMIC] Asking for prayers...

  
For all of my TM friends, I am asking for prayers.  I am having the same 
symptoms today and tonight that I did when I first came down with TM, exactly.  
I'm hoping and praying it is only because I have been doing too much.  I got up 
this morning and fell and have had a hard time walking since then.  Jeanne in 
Dayton 


  

Re: [TMIC] Asking for prayers...

[Trudy Ogilvie]

Jeanne,I am on way to morning mass! you will be in all of our prayers. keep
in touch.. Try not to get too stressed and worried..
I will be thinking of you all day!
Blessings
Trudy

On Thu, Mar 5, 2009 at 10:51 PM, jrushton wrote:

>For all of my TM friends, I am asking for prayers.  I am having the
> same symptoms today and tonight that I did when I first came down with TM,
> exactly.  I'm hoping and praying it is only because I have been doing too
> much.  I got up this morning and fell and have had a hard time walking since
> then.  Jeanne in Dayton
>