RE: [TMIC] Face book

[Emily]

The news is saying that the strain of flu going around is not included in
the shot that they are giving this year so even if you have gotten the shot
you are still susceptible for the current flu strain that is circulating at
epidemic proportions. 

 

 

  _  

From: Gary Thomas [mailto:gbthomas8...@sbcglobal.net] 
Sent: Tuesday, January 15, 2013 9:26 AM
To: Transverse Myelitis list
Subject: Re: [TMIC] Face book

 

I used to get flu shots but stopped after getting TM in 2004.  I have not
had the flu.until this season!  I got it at around Christmas and am
still not up to full strength (which is not that great anyway due to the
fatigue I already had from the TM). 

 

 So, I am rethinking, should I get the shot next year, or not?  Fortunately,
I did not pass the flu to my 87-year-old dad who always gets the shot but
forgot this time, or my pregnant daughter and her family visiting us while I
was sick, or my wife who has not gotten the shot either.  I think her
chiropractor is not for getting it.  I don't think my doctor or neurologist
had anything against getting the shot.  I guess I'll have a year to think
about it???  

 

The worst part about the flu was that my grandkids were here from Georgia
and I did not get to do much with them.  

 

Gary in Niles, MI

- Original Message - 

From: Robert Pall   

To: jcs...@yahoo.com ; tmic-list@eskimo.com 

Sent: Tuesday, January 15, 2013 8:11 AM

Subject: Re: [TMIC] Face book

 

I get the Flu and Pneumonia shot and have never gotten the flu in the past
15 years. And The TMIC_LIST is pretty much the only one I read...it is too
bad that so many of our group has gone to facebook...I guess you can't stop
progress!~

Rob in New Jersey

 

 

 

-Original Message-
From: john snodgrass 
To: transverse myelitis 
Sent: Mon, Jan 14, 2013 10:59 pm
Subject: Re: [TMIC] Face book

 

i had the flu shot and the pneumonia shot the same time and i still cant
play the violin!


  _  


From: Dalton Garis 
To: Pat Cooley ; pjv1...@chartermi.net 
Cc: tmic  
Sent: Monday, January 14, 2013 9:31 PM
Subject: Re: [TMIC] Face book

 

I still listen and read.

 

Because I still have TM and always will.  By the Way, that mustard cure has
greatly reduced seizures for me.  Now, I only get them every 10 days or so.

 

DG

Dalton Garis

Flushing, Queens

New York, USA

Mobile: 718-838-0437

 

From: Pat Cooley 
Date: Monday, 14 January 2013 8:33 PM
To: 
Cc: tmic 
Subject: Re: [TMIC] Face book
Resent-From: 
Resent-Date: Mon, 14 Jan 2013 17:33:21 -0800

 

Patti I think you made the right decision.  You have to do what is best for
you and your family.  You need to protect your mom, hubby & grandchildren.

 

Patti C. in Wisconsin

On Mon, Jan 14, 2013 at 5:39 PM,  wrote:

I've noticed some talk of people comng back to the tmic list for discussions
and wondered just how many people actually look at this site anymore.  The
onky discussion I have is that I received my first flu shot last Wednesday
since my 9 years with TM.  We had two deaths from the flu in our area and I
had a fear of carrying the flu to my 86 year old Mom, my diabetic hubby, or
my grandchildren.  My fears of being a carrier outweighed my fear of a
reaction.  I called my Neurologist and asked if he had any objection to me
getting the flu shot.  His answer was go ahead and get it.

 

Patti V - Michigan 





 

Re: [TMIC] try this

[emily]

Do you put it directly on the muscles that are spasing?

Sent from my Verizon Wireless BlackBerry

-Original Message-
From: jeff bernier 
Date: Thu, 26 Jul 2012 08:16:02 
To: ; 
Subject: [TMIC] try this
for those of you with problems with spastisity heres a trick i learned.i have a 
baclofen pump and take 5 mg clonipin daily and still get spasms in my legs.i 
have found that aspercream hot for arthritis works outstanding,i had heard this 
from another person with ms and it worked.

RE: [TMIC] Pain

[Emily]

My husband is permanently catherized because of the same reason.  It just
wouldn't work anymore..to pee with or anything else .LOL

 

  _  

From: Dalton Garis [mailto:malugss...@gmail.com] 
Sent: Thursday, February 09, 2012 7:39 AM
To: Susan Kleinz; Janice Nichols
Cc: tmic-list@eskimo.com
Subject: Re: [TMIC] Pain

 

Don't think it's just you ladies;

 

I stand in front of the porcelain throne, with my legs aching, waiting, and
begging, "Please, please .."

 

Dalton 

 

From: Susan Kleinz 
Date: Wed, 8 Feb 2012 20:57:45 -0700
To: Janice Nichols 
Cc: 
Subject: Re: [TMIC] Pain
Resent-From: 
Resent-Date: Wed, 8 Feb 2012 20:44:53 -0800

 

no, but it takes me a long time to pee!

On Feb 6, 2012, at 6:12 PM, Janice Nichols wrote:





Ladies,

 

Do any of you have burning sensations or spasms around/in your urethra?
I do, and have since TM struck.

I also feel a spasm in the urethra when I need to urinate.Does any of
this sound familiar?

 

Janice

 

RE: [TMIC] Squeezes

[Emily]

I believe it is called banding..talk to your neuro about it..it is quite
common with TM.

 

  _  

From: john snodgrass [mailto:jcs...@yahoo.com] 
Sent: Wednesday, January 25, 2012 7:09 PM
To: James Berg; transverse myelitis
Subject: Re: [TMIC] Squeezes

 

thats a new one on me!

 

in other words,,,never heard of it.

 

being different sounds strange,sure hope it is nothing additional other than
different

 

  _  

From: James Berg 
To: transverse myelitis  
Sent: Wednesday, January 25, 2012 3:55 PM
Subject: [TMIC] Squeezes

 

Recently I have been experiencing full body squeezes when I am stretched out
in bed.  Has anyone else had such a thing happen?  Pretty scary! 

 

RE: [TMIC] we have a female child family member with TM symptoms

[Emily]

http://www.bbc.co.uk/health/physical_health/conditions/guillainbarre1.shtml

 

This website says that it isn’t inherited but genetics can play a part on
who gets the disease…please read…..

 

  _  

From: Emily [mailto:em...@telephonelady.com] 
Sent: Wednesday, January 11, 2012 3:33 PM
To: 'Elizabeth Clark'; celr...@aol.com; rj_ran...@yahoo.com;
tmic-list@eskimo.com
Subject: RE: [TMIC] we have a female child family member with TM symptoms

 

How is it different from TM?

 

  _  

From: Elizabeth Clark [mailto:xbeecla...@gmail.com] 
Sent: Wednesday, January 11, 2012 2:36 PM
To: em...@telephonelady.com; celr...@aol.com; rj_ran...@yahoo.com;
tmic-list@eskimo.com
Subject: RE: [TMIC] we have a female child family member with TM symptoms

 


According to the buzz.com list of auto-immune diseases: 


 


Guillain-Barré Syndrome: It is an autoimmune disorder which affects the
peripheral nervous system. It is normally initiated by some acute infection.
The characteristic of this disease is the weakness which starts with the
lower limbs and rapidly grows in the ascending order. In this disorder,
failure of the respiratory system is of the highest concern, hence, the
treatment mostly starts with the intubation of the patient. Once the patient
is stable, the treatment mostly includes of immunoglobulins or
plasmapheresis.


 

 

  _  

From: Emily [mailto:em...@telephonelady.com] 
Sent: Wednesday, January 11, 2012 10:41 AM
To: celr...@aol.com; rj_ran...@yahoo.com; tmic-list@eskimo.com
Subject: RE: [TMIC] we have a female child family member with TM symptoms

 

With that many people in the same family….maybe all of you should be tested
for Gillian B??? 

 

 

 

  _  

From: celr...@aol.com [mailto:celr...@aol.com] 
Sent: Wednesday, January 11, 2012 1:22 PM
To: rj_ran...@yahoo.com; tmic-list@eskimo.com
Subject: Re: [TMIC] we have a female child family member with TM symptoms

 

She is in my prayers.

 

Jane/Splendora Tx

 

In a message dated 1/11/2012 12:15:15 P.M. Central Standard Time,
rj_ran...@yahoo.com writes:

Mary woke up yesterday morning and could not raise up (sit up) or walk. She
is at children's hospital.  The onset sounds like TM. Mary is my mom's great
niece and my 3rd cousin. I have not been able to talk with family members
and found out through word of mouth.  Mary's uncle, my 2nd cousin, was
struck with similar event about the same time that I was hit with TM.  But
Adam was diagnosed with Gillian B. (can't spell that word and won't try).  

So we are concerned about the issue but I am concerned about the doctor's
getting it right. 

RE: [TMIC] we have a female child family member with TM symptoms

[Emily]

How is it different from TM?

 

  _  

From: Elizabeth Clark [mailto:xbeecla...@gmail.com] 
Sent: Wednesday, January 11, 2012 2:36 PM
To: em...@telephonelady.com; celr...@aol.com; rj_ran...@yahoo.com;
tmic-list@eskimo.com
Subject: RE: [TMIC] we have a female child family member with TM symptoms

 


According to the buzz.com list of auto-immune diseases: 


 


Guillain-Barré Syndrome: It is an autoimmune disorder which affects the
peripheral nervous system. It is normally initiated by some acute infection.
The characteristic of this disease is the weakness which starts with the
lower limbs and rapidly grows in the ascending order. In this disorder,
failure of the respiratory system is of the highest concern, hence, the
treatment mostly starts with the intubation of the patient. Once the patient
is stable, the treatment mostly includes of immunoglobulins or
plasmapheresis.


 

 

  _  

From: Emily [mailto:em...@telephonelady.com] 
Sent: Wednesday, January 11, 2012 10:41 AM
To: celr...@aol.com; rj_ran...@yahoo.com; tmic-list@eskimo.com
Subject: RE: [TMIC] we have a female child family member with TM symptoms

 

With that many people in the same family….maybe all of you should be tested
for Gillian B??? 

 

 

 

  _  

From: celr...@aol.com [mailto:celr...@aol.com] 
Sent: Wednesday, January 11, 2012 1:22 PM
To: rj_ran...@yahoo.com; tmic-list@eskimo.com
Subject: Re: [TMIC] we have a female child family member with TM symptoms

 

She is in my prayers.

 

Jane/Splendora Tx

 

In a message dated 1/11/2012 12:15:15 P.M. Central Standard Time,
rj_ran...@yahoo.com writes:

Mary woke up yesterday morning and could not raise up (sit up) or walk. She
is at children's hospital.  The onset sounds like TM. Mary is my mom's great
niece and my 3rd cousin. I have not been able to talk with family members
and found out through word of mouth.  Mary's uncle, my 2nd cousin, was
struck with similar event about the same time that I was hit with TM.  But
Adam was diagnosed with Gillian B. (can't spell that word and won't try).  

So we are concerned about the issue but I am concerned about the doctor's
getting it right. 

RE: [TMIC] we have a female child family member with TM symptoms

[Emily]

With that many people in the same family..maybe all of you should be tested
for Gillian B??? 

 

 

 

  _  

From: celr...@aol.com [mailto:celr...@aol.com] 
Sent: Wednesday, January 11, 2012 1:22 PM
To: rj_ran...@yahoo.com; tmic-list@eskimo.com
Subject: Re: [TMIC] we have a female child family member with TM symptoms

 

She is in my prayers.

 

Jane/Splendora Tx

 

In a message dated 1/11/2012 12:15:15 P.M. Central Standard Time,
rj_ran...@yahoo.com writes:

Mary woke up yesterday morning and could not raise up (sit up) or walk. She
is at children's hospital.  The onset sounds like TM. Mary is my mom's great
niece and my 3rd cousin. I have not been able to talk with family members
and found out through word of mouth.  Mary's uncle, my 2nd cousin, was
struck with similar event about the same time that I was hit with TM.  But
Adam was diagnosed with Gillian B. (can't spell that word and won't try).  

So we are concerned about the issue but I am concerned about the doctor's
getting it right. 

RE: [TMIC] quiet ot

[Emily]

Has anyone used Clonopin (not sure of spelling)?  If so, did it help with
the spasms?

 

  _  

From: Susan Kleinz [mailto:skle...@cox.net] 
Sent: Monday, November 28, 2011 11:34 AM
To: celr...@aol.com
Cc: tmic
Subject: Re: [TMIC] quiet ot

 

I was busy with Thanksgiving...

 

My two lesions are at T-7, so I do not have the brain thing going on.

My first episode, I did have slurred speech...as there is a 3rd lesion in my
brain that doesn't seem to be activated now.

I would take any drug that would help me. Ritalin included.

I'm on Baclofen, Neurontin, Zoloft and Savella. I should be smiling all day
long!

 

I am grateful to this website. I joined the TM Association and received a
bunch of good literature. Also ordered The Official Patient's Source Book on
TM.

I am amazed that my neurologist didn't recommend these resources. Nor did I
know how rare this illness is...

 

My husband says I'm one in a million.

 

Susan K., Phoenix, AZ

 

On Nov 28, 2011, at 7:10 AM, celr...@aol.com wrote:





I hope everyone is ok. It has been very quiet on this site since before
Thanksgiving or maybe I am kicked off again. Missing you.

Jane/Splendora Tx

 

[TMIC] Baclofen Question

[Emily]

Do any of you have the Baclofen pump?  If so, does it help?  How does it
work?  The neurologist is talking about my husband using this method of
taking Baclofen because the spasticity in his legs is preventing him from
being able to stand and is interfering with his physical therapy.  Your
input is appreciated.

 

Emily Meyers

 

 

[TMIC] Donkey Story & TM

[Emily]

This really isn't off topic because each and every one of us that is dealing
with TM (in whatever way) needs to follow this donkey's way of thinking:

 



 

One day a farmer's donkey fell down into a well. The animal cried piteously
for hours as the farmer tried to figure out what to do. Finally, he decided
the animal was old, and the well needed to be covered up anyway; it just
wasn't worth it to retrieve the donkey.

He invited all his neighbors to come over and help him. They all grabbed a
shovel and began to shovel dirt into the well. At first, the donkey realized
what was happening and cried horribly. Then, to everyone's amazement he
quieted down.

A few shovel loads later, the farmer finally looked down the well. He was
astonished at what he saw. With each shovel of dirt that hit his back, the
donkey was doing something amazing. He would shake it off and take a step
up.

As the farmer's neighbors continued to shovel dirt on top of the animal, he
would shake it off and take a step up. Pretty soon, everyone was amazed as
the donkey stepped up over the edge of the well and happily trotted off!

MORAL :
Life is going to shovel dirt on you, all kinds of dirt. The trick to getting
out of the well is to shake it off and take a step up. Each of our troubles
is a steppingstone. We can get out of the deepest wells just by not
stopping, never giving up! Shake it off and take a step up.

Remember the five simple rules to be happy:

1. Free your heart from hatred - Forgive.

2. Free your mind from worries - Most never happens.

3. Live simply and appreciate what you have.

4. Give more.

5. Expect less from people but more from God.

You have two choices... smile and close this page, 
or pass this along to someone else to share the lesson . 
God bless us all!

 

Emily Meyers

Columbus, NJ

 

<>

RE: [TMIC] OFF TOPIC;when in doubt

[Emily]

I love your way of thinking Cheryl!!

 

  _  

From: rn11...@yahoo.com [mailto:rn11...@yahoo.com] 
Sent: Thursday, October 06, 2011 12:31 PM
To: tmic
Subject: [TMIC] OFF TOPIC;when in doubt

 

When in doubt eat cake.

When you haven't a clue,add ice cream.

 

   Cheryl

RE: [TMIC] I haven't been here for a long time

[Emily]

Hi Betty,

 

Weirdly, the Metanx prescription for my husband was also through his
podiatrist.   He was cutting his toenails and noticed the legs spasing.  I
just find it amazing that the podiatrist knew about Metanx but the
Neurologist did not!!

 

Emily

 

  _  

From: Elizabeth Clark [mailto:xbeecla...@gmail.com] 
Sent: Saturday, October 01, 2011 10:17 PM
To: em...@telephonelady.com; pjv1...@chartermi.net; 'tmic'
Subject: RE: [TMIC] I haven't been here for a long time

 

Hi Emily.

 

I tried Metanx for about three months at the suggestion of the podiatrist
I've been seeing. I originally went to him for a toe fungus I had and after
detailing my TM for him, he recommended a new extremely light-weight brace
for my weak left leg to help with my balance issues. The brace works great
whenever I have to do a lot of walking (grocery store, mall, etc.) but I
don't wear it all the time because my leg then tends to depend too much on
it and begins to weaken even more. 

 

Because of my neuropathy, he mentioned some success another patient of his
had with Metanx and wanted me to try it. Unfortunately, I had no noticeable
improvements of any sort and I decided to discontinue using it - especially
considering it wasn't covered by my insurance and is somewhat costly. 

 

I'm glad to hear it is helping your husband, so it must be like everything
else related to TM - what works for some doesn't necessarily work for all.
It's a condition that requires trial-and-error for just about everything.
The main thing is to stay on top of it - especially through forums such as
this sight.since even the majority of doctors don't know enough about TM, it
gives us the opportunity to see what's out there that others are using so we
can take it back to our own physicians and make better-informed decisions on
our treatment. 

 

No matter what. don't let TM get you down! If you do, it wins and that is
the biggest tragedy of all!

 

Betty

(in Northern California)

 

  _  

From: Emily [mailto:em...@telephonelady.com] 
Sent: Saturday, October 01, 2011 6:43 PM
To: pjv1...@chartermi.net; 'tmic'
Subject: RE: [TMIC] I haven't been here for a long time

 

I am here...and I am also on Facebook but I like this method MUCH better.  I
do agree, it has been very quiet here lately.  

 

I have been wondering how Dalton has been doing since he is back in the USA.
Has anyone heard?

 

And what about our dear friend and crazy West VA buddy John..where has he
been lately?  

 

Maybe this is a good thing..everyone is without pain, spasms, banding,
etc...so no one is talking..LOL

 

OH...I did forget one thing..my husband is on a vitamin B complex with folic
acid and it has helped with banding and spasms.it is a prescription only and
it is called Metanx.  Has anyone else ever heard of this?  It doesn't work
in all spinal cord injury patients but so far it is working with my
husband.praise the Lord!!!

 

Emily

 

 

  _  

From: pjv1...@chartermi.net [mailto:pjv1...@chartermi.net] 
Sent: Saturday, October 01, 2011 9:35 PM
To: tmic
Subject: [TMIC] I haven't been here for a long time

 

Hi 

I got "booted off" tmic several months ago by the computer phantom that does
that every once in a while and decided not to sign back up for various
reasons.  I signed up today because I visited with David and Judy Hoops ,
aka Hey Jude, today and we talked about how long it had been since we had
been on the TMIC.  I visited the archives to see what the current subjects
are and who was participating and the subject that caught my attention was
RE: facebook.  How fitting.  That was exactly what Dave and Judy and I
talked about.  They told me about TM on FaceBook and how confused they get
by it and wondered if it had totaly replaced TMIC.  I told Dave I would chek
into it and let him know what I found out.

 

It was good to see so many people post on that subject.  There were names
that I hadn't seen on TMIC for a long time.  It sounds like a lot of people
were lurking I the background.  I remember the last post I read. Someone
asked how Saronj from India was and she answered.  

 

Jude has been in hospital twice in the last three weeks.  She sure is a
trooper!  She's in ICU now awaiting test results.  

 

I think I'll stay on TMIC for a while.  

 

Patti - Michigan

TM for 8 years  and wouldn't have known what to do without TMIC and the TM
Forum.  I'm glad there's plenty of info for new TMers, however, my brain
couldn't have handled it all back then.  

RE: [TMIC] I haven't been here for a long time

[Emily]

I am here...and I am also on Facebook but I like this method MUCH better.  I
do agree, it has been very quiet here lately.  

 

I have been wondering how Dalton has been doing since he is back in the USA.
Has anyone heard?

 

And what about our dear friend and crazy West VA buddy John..where has he
been lately?  

 

Maybe this is a good thing..everyone is without pain, spasms, banding,
etc...so no one is talking..LOL

 

OH...I did forget one thing..my husband is on a vitamin B complex with folic
acid and it has helped with banding and spasms.it is a prescription only and
it is called Metanx.  Has anyone else ever heard of this?  It doesn't work
in all spinal cord injury patients but so far it is working with my
husband.praise the Lord!!!

 

Emily

 

 

  _  

From: pjv1...@chartermi.net [mailto:pjv1...@chartermi.net] 
Sent: Saturday, October 01, 2011 9:35 PM
To: tmic
Subject: [TMIC] I haven't been here for a long time

 

Hi 

I got "booted off" tmic several months ago by the computer phantom that does
that every once in a while and decided not to sign back up for various
reasons.  I signed up today because I visited with David and Judy Hoops ,
aka Hey Jude, today and we talked about how long it had been since we had
been on the TMIC.  I visited the archives to see what the current subjects
are and who was participating and the subject that caught my attention was
RE: facebook.  How fitting.  That was exactly what Dave and Judy and I
talked about.  They told me about TM on FaceBook and how confused they get
by it and wondered if it had totaly replaced TMIC.  I told Dave I would chek
into it and let him know what I found out.

 

It was good to see so many people post on that subject.  There were names
that I hadn't seen on TMIC for a long time.  It sounds like a lot of people
were lurking I the background.  I remember the last post I read. Someone
asked how Saronj from India was and she answered.  

 

Jude has been in hospital twice in the last three weeks.  She sure is a
trooper!  She's in ICU now awaiting test results.  

 

I think I'll stay on TMIC for a while.  

 

Patti - Michigan

TM for 8 years  and wouldn't have known what to do without TMIC and the TM
Forum.  I'm glad there's plenty of info for new TMers, however, my brain
couldn't have handled it all back then.  

RE: [TMIC] Definition

[Emily]

I agree that your outlook on life has a lot to do with the three H's ---
Happiness, Harmony and Health.  When life hands you lemons...make
lemonade!!!

 

  _  

From: James Berg [mailto:molokai...@gmail.com] 
Sent: Monday, August 22, 2011 4:46 PM
To: Roger & Terese Pratt
Cc: tmic-list
Subject: Re: [TMIC] Definition

 

Roger--I used to feel that way most every day--I am a burden on my
family--too old to do anything but drink beer and watch TV.  I might as well
die.  They have worked very hard to improve my view on life--I am a
para--they wanted to get me into the State vocational rehab program and my
attitude was what, learn a new profession at 64?  Old dogs and new tricks,
right?  Well I am currently learning to be a computer architect and am being
trained on the auto cad system to draw house plans.  I love it!  I seem to
be a natural at it and am able to turn out a full set of drawings (8 pages)
in about a week.  I still have much to learn but it just goes to show that
even when you think you are a drag on society you may yet find a way to be a
useful contributor.

On Tue, Aug 16, 2011 at 10:14 AM, Roger & Terese Pratt
 wrote:

This is how I feel some times as an invalid (or is that invalid as in not
valid).  I know it is wrong, but if Nietzshe said it, it must have been
thought many times before.  Just having a bad day, I'll be more up tomorrow.

"The invalid is a parasite on society. In a certain state it is indecent to
go on living. To vegetate on in cowardly dependence on physicians and
medicaments after the meaning of life, the right to life, has been lost
ought to entail the profound contempt of society."
-Friedrich Nietzsche

- Roger in Kennewick, WA

 

RE: [TMIC] Chiropractic treatment

[Emily]

There is a good amount of people with TM that has had spine injuries prior
to getting TM.  Is there a connection to this or just coincidence?  Does
anyone know?

 

Emily Meyers

 

 

  _  

From: bobby jim [mailto:elbobber...@earthlink.net] 
Sent: Sunday, April 03, 2011 7:41 PM
To: Bob and Sue Mattis; TMIC list
Subject: Re: [TMIC] Chiropractic treatment

 

Well, I have spondylolisthesys at L-2,3    which means that L-3 is out
of place and pulled back from L-2.   I got it in the mid 1980s when trying
to lift a very heavy window without support.   

I felt a ping in my lower back, but that was all.   

I forgot about it till:  after trying to move a crate weighing over 220 lbs,
I pulled that old injury to my spine and a few dayze later, I had a bad case
of sciatica and then lumbago.   So I went to a chiropractor who took x-rays
of my spine, pinpointed the troubling spot and proceeded to manipulate my
back, pushing here, massaging there, etc   

My neck was also having a bout of crepitation so she worked on that one as
well.  Five years afterwards, I lost all discomfort in my back and neck.


Yes, it took that longbut it was worth it.  However,  when I overdo it
at work some 'pain' comes back so I do some exercises she also taught me,
some involve stretching and bending; and when doing some of them I can
'hear' my spine shifting (crunch crunch) and the 'pain' is gone.  Same with
my neck.   The noises have never bothered me, and have never been
threatening to my back or neck.

 

I've heard of some horror stories about chiropractors.   But not me did
I luck out...

If I had to do it again, I'd jump right in.

 

BobbyJim   

From: Bob <mailto:bobsue6...@roadrunner.com>  and Sue Mattis 

To: TMIC list <mailto:TMIC-list@eskimo.com>  

Sent: Friday, April 01, 2011 16:35

Subject: [TMIC] Chiropractic treatment

 

Hey group!

 

I don't usually ask about opinions dealing with myself, but more often about
concerns of other folks, but this time it's about me. Has anyone in our
group ever used chiropractic treatment after TM?  I have had TM for 10 years
and are able to walk either unaided or with a cane or walker depending on
the circumstances.  Over the last few years, because of my gait issues, and
the way I "waddle", I have developed hip pain on a daily basis.  I have
gotten approval from my neuro to see a chiropractor but there is still that
little nagging voice in my head that tells me not to mess with my spine.
I'd appreciate any thoughts you have on this.  Thanks folks!

 

Sue

RE: [TMIC] OT ?

[Emily]

Regarding Baclofin...the physical therapist suggested that my husband ask
his doctor for Baclofin due to the spasms in his legs.  The spasms are
effecting his progress in physical therapy.  Can you give me the skinny on
what are the side effects?  He recommends 10 mg 3X per day.  

 

Emily Meyers

 

  _  

From: tracyleab...@yahoo.com [mailto:tracyleab...@yahoo.com] 
Sent: Tuesday, March 29, 2011 9:02 PM
To: john snodgrass; transverse myelitis
Subject: Re: [TMIC] OT ?

 

I am on baclofin. myself...whole nether story but her doctor has not even
suggested that. 

Sent from my Verizon Wireless BlackBerry

  _  

From: john snodgrass  

Date: Tue, 29 Mar 2011 17:51:51 -0700 (PDT)

To: transverse myelitis

Subject: Re: [TMIC] OT ?

 


I'm not sure weather it was the maximum dose of baclofin or the maximum dose
of gabapentin that slowed the burning down but since i have maxed out both
of them I have noticed that my feet and legs don't burn as bad as often.
also maxing out the gabapentin has really helped with the spasms in my legs.

 

not done away with them but sure has helped.



--- On Tue, 3/29/11, tracyleab...@yahoo.com  wrote:


From: tracyleab...@yahoo.com 
Subject: Re: [TMIC] OT ?
To: "Janice Nichols" , "wim from holland"
, "TMIC" 
Date: Tuesday, March 29, 2011, 8:37 PM

Yes I am very very involved. I am the oldest and she is my heart.. She just
was diagnosed eight months ago. It came on so fast which I understand is how
it happens. She is 61. She has this burning in her feet that is horrible she
says it feels like they are burning and she can not get them cool enough.
She trys to ice them down but that is not working anymore. 

Sent from my Verizon Wireless BlackBerry


  _  


From: "Janice Nichols"  

Date: Tue, 29 Mar 2011 19:22:34 -0500

To: ; wim from
holland; TMIC

Subject: Re: [TMIC] OT ?

 

Tracy, can you tell me a little about her?How old is she, how long has
she had TM, what part of her did it hit, has there been any improvement?
I was 60 when TM hit me

and my daughter and husband were invaluable. What is your situation, can
you spend time with her? How is her attitude?  Sorry for all the
questions, but it will help us to

help you.

Janice, in Missouri

 

 

From: tracyleab...@yahoo.com
<http://us.mc658.mail.yahoo.com/mc/compose?to=tracyleab...@yahoo.com>  

Sent: Tuesday, March 29, 2011 7:09 PM

To: Janice Nichols
<http://us.mc658.mail.yahoo.com/mc/compose?to=jan...@centurytel.net>  ; wim
from holland
<http://us.mc658.mail.yahoo.com/mc/compose?to=wim_from_holl...@hotmail.com>
; TMIC <http://us.mc658.mail.yahoo.com/mc/compose?to=tmic-list@eskimo.com>  

Subject: Re: [TMIC] OT ?

 

I'm new to this, but have been getting all of the emails for awhile...my mom
has TM and it was a very fast thing that I am trying to get a grasp on and
understand Any advice would be greatly appreciatedTracy bell 

Sent from my Verizon Wireless BlackBerry


  _  


From: "Janice Nichols"  

Date: Tue, 29 Mar 2011 18:59:46 -0500

To: wim from holland;
TMIC

Subject: Re: [TMIC] OT ?

 

Things have been pretty quiet on the website.One of these days a subject
will come up that will start a ruckus.  Also, apparently some

of our members spend more time on Facebook too.Hope you are doing
well.

Janice

 

From: wim from holland
<http://us.mc658.mail.yahoo.com/mc/compose?to=wim_from_holl...@hotmail.com>


Sent: Tuesday, March 29, 2011 5:17 PM

To: TMIC <http://us.mc658.mail.yahoo.com/mc/compose?to=tmic-list@eskimo.com>


Subject: [TMIC] OT ?

 

Did not get any mail the last week. Everybody gardening, or sitting lazy in
the sun hole day?
 
Wim

 

Re: [TMIC] Connected?

[emily]

My husband was originally diagnosed with tm but because he kept getting 
"relapses" they began looking into other causes of symptoms. It was later 
discovered that he had lyphphoma which caused a leasion (sp) on his spinal 
column which looked like tm. He is the only known person where lymphoma 
penetrated the myelin. After radiation and chemo the leasion is gone but the 
spinal cord damage remains. Dalton recurring incidents are not typical of tm. I 
hope they are checking you for MS or other possibilities regarding your very 
unusual symptoms. 

Emily

Sent from my Verizon Wireless BlackBerry

-Original Message-
From: "Gary Thomas" 
Date: Tue, 8 Mar 2011 23:25:14 
To: Dalton Garis; Janice Nichols; 
; TMIC
Subject: Re: [TMIC] Connected?

Dalton,

Maybe I'm missing something, but what exactly are these "attacks" you describe?

I don't understand what your neurologist calls "cycling" as far as worsening of 
TM symptoms.

I have always understood, and have read somewhere, perhaps on this list or the 
TM Journal, that we  have the onset of TM experiences (lesions on the spinal 
cord) which for most of of us is a one-time occurrence with possibly lasting 
symptoms,  AND we have times of exacerbation brought on by physical or mental 
overexertion, maybe an illness such as even a cold and so on (I have worse 
banding from sitting too long or standing too long) which are not caused by 
further damage to the spinal cord but worsening of symptoms at least 
temporarily.

So, again, Dalton, I am confused as to your attacks--could it be another 
lesion, could you be experiencing MS?  I hope not, but just wonder what is 
happening--and forgive me for my curiosity.

Gary in Michigan
 - Original Message - 
  From: Dalton Garis 
  To: Janice Nichols ; jack...@att.blackberry.net ; TMIC 
  Sent: Tuesday, March 08, 2011 1:58 PM
  Subject: Re: [TMIC] Connected?


  Hi;


  Thanks for your support.


  I got another attack today.  It started slowly with pain in my feet and hands 
yesterday, which became weaker by the hour.  Then it slowly worked itself up 
the legs and arms today, weakening me as it went.  Then it hit my lower and 
upper back, and I could no longer stand up, and am now unable to walk without 
the aid of crutches, and only for a few yards.


  When it got really bad today, I was unable to speak more than a few words 
without causing convulsions in my back and arms.  After a while I could speak 
again.  I had to be careful with the swallowing which was no longer on 
automatic.  Same with urinating.  It took great concentration to sort of 
identify the nerves and wake them up.


  There were moments when I could not feel my legs and didn't know if I could 
move them.  Again, it took concentration to wake the nerves up and get the legs 
moving again.  The pain in the legs and arms and back is terrific and nothing 
touches it.


  My neurologist has told me that there are, of course, stronger medications 
which can mostly arrest this cycling and give me some peace.  But also, of 
course, they would make me a zombie for most of the day and I would likely 
become unable to work any longer.


  I am happy to be able to type again.  It is five minutes before eleven pm and 
I can finally work my hands a little, for typing, making coffee, and getting 
some snacks from the fridge.


  Well, I wrote all this because some have been saying that it is vey quiet.  
So here's a raft of symptoms to look at.  


  Thanks so much, friends, for being here.


  Dalton Garis



  Abu Dhabi, United Arab Emirates
  Office: +971-02-607-5070/5297
  Mobile: +971-50-668-5760-- 



  From: Janice Nichols 
  Date: Mon, 7 Mar 2011 10:31:30 -0600
  To: Dalton Garis , , TMIC 

  Subject: Re: [TMIC] Connected?



  Dalton, no,  but I do have cycles of feeling okay and then feeling more 
discomfort from nerve pain and spasms. Can't believe the doc's can't get 
you under control
  better than that.How about going to one of the best known hospitals - 
especially those fairly familiar with TM?Or, maybe you have.All it 
takes is one
  doctor who can understand what is going on with you - hopefully.  I 
realize you are also trying to hold down a job and you have the pressure from 
that to
  always be there, but I just can't believe there isn't some way this can be 
controlled.   I wish you the best.
  Janice

  From: Dalton Garis 
  Sent: Sunday, March 06, 2011 9:57 PM
  To: jack...@att.blackberry.net ; TMIC 
  Subject: Re: [TMIC] Connected?

  So;

  I can report that I have about a 5-day period wherein I am mostly free of 
severe difficulties, able to walk with a cane and to work for about 6 hours of 
the day.  After this interlude, I have two or three days of extreme weakness 
and convulsions limiting me to the big Morris chair or to bed.

  That has been my cycle for about three months now.  It will be one year since 
m

[TMIC] My Husbands Update

[Emily]

I wrote yesterday and told you about my husband and his lymphoma in the
spinal cord.  Here is the update that I sent out to family & friends:

 

Hello Family & Friends,

 

It has been 12 days since my last update.  Lots has happened since then so
let me fill you in on what has been happening.  

 

John is going to therapy 5 days per week.  He certainly has the right
attitude but sometimes his body doesn't want to cooperate.  There is lots of
weakness going on and we believe that it has something to do with
Chemotherapy.   While chemo is busy killing cancer cells it does wreak havoc
on the other parts of your body.  So little progress has been made at
therapy but it certainly isn't from a lack of trying.  John really wants to
at least get to the point that he was at after leaving rehab back in
October, which was basically in a wheelchair but could transfer to bed,
toilet, chair, etc. using a walker.  As this point in time, he is in a bed
most of the day (wheelchair 3-5 hours per day) and is using a transfer board
to do his transfers.  He is able to stand in place anywhere between 30
seconds to 1.5 minutes depending if it is a good day or a bad day.

 

Marcella continues to be a nice place.  The amenities are very nice.  The
nursing staff are very pleasant and just like with any other place they are
short staffed and over worked.  We have found this to be true in each
hospital and/or rehab since all of this started.  But considering it is
pretty good there.  John attends occupational and physical therapy 5 days
per week for at least 2.5 hours total.

 

Today, John had his 3rd chemo treatment.  When we arrived and they did the
usual blood work and then we met with Nancy, Dr. Henry's CRNA.  She gave us
great news.  The lymphoma in the back is diminished..gone.  The lymph nodes
under the arms and the groin have regressed to less than half their size
compared to the previous Pet/Cat Scans which were taken prior to starting
the radiation and chemo.   This is fantastic news.  John is also starting to
get "some" feelings in his left leg..things like muscle spasms, sensations,
etc.  This is all part of the healing process..and we pray that the spine
will heal completely and all of that will go away.  We really don't know how
much damage has occurred nor how much will return to good health..only time
will tell.

 

John tolerated the chemo very well and was able to get the abbreviated
version since this was the 3rd treatment.  The first time he got chemo they
were very careful and it dripped at a very slow speed which took almost 12
hours from start to finish.  Today Chemo started around 12PM and he was on
the stretcher heading back to Marcella by 3:15PM.While he was getting
Chemo we had Chinese food for lunch and John was able to eat 8 buffalo
chicken wings and a platter of shrimp low mein and pork fried rice.  He even
ate his fortune cookie!!  It was extremely enjoyable!!

 

Another good news item is that originally we were told that he would have to
have 5 or 6 chemo treatments.  Today we were told that he only has to have 1
more treatment which he will get on February 9th.  He will have to get
another Pet/Cat Scan sometime after the last dose of chemo.

 

We also found out that John's hemoglobin and hemocrit was very low
today.like at 8.5.  So they have him an injection to help elevate that.
This injection is much like Procrit but you only have to have it once every
3 weeks (it is called Aranesp).  He will get his second dose at the next
chemo visit.  Nancy said that the low numbers is contributing to his
weakness and may be why he is having difficulty making progress in therapy.


 

We also met with the Nutritionist.  John has lost a lot of weight recently
because of the thrush he had in his mouth.it caused him to have difficulty
swallowing.  She has recommended that he drink an ensure in between meals to
get good nourishment and said that she was going to look at his blood work
and contact Marcella and have him take a multi vitamin.  

 

The social worker gave us information regarding what we need to do when John
comes home.  If he doesn't make progress by February 5th, Medicare will not
allow him to stay at a sub-acute facility and he will have to come home.  So
we talked about the options that are available to us like at home physical
therapy, visiting nurses, visiting certified nursing assistants, etc.  I
will talk more about this as we approach John coming home whenever that will
be.  

 

So that is the update..it certainly is a positive update.  We were both
excited about the shortened chemotherapy treatments because once the chemo
goes away the weakness will go away and he will be able to concentrate on
getting some of his mobility back.

 

Thank you for being there when we need you..but keep those prayers coming..I
think they are starting to work now

 

God bless all of you and keep you healthy!!

 

Love to all,

Emily/Mom

 

 

RE: [TMIC] TM

[Emily]

My husband was originally diagnosed with TM on September 4th of this year.
He was put on steroids and was weaned off of them orally.   At that point he
was able to walk about 50 feet with a walker but was pretty much wheelchair
bound.  The lesion was between T7-11 with enhancement at T9.   Within a few
days after the steroids stopped, he would get a relapse.  This happened a
couple of times...and then the docs scratched their heads and said TM
doesn't do this so they began looking at other possibilities.  On November
20th they discovered that he had non-Hodgkin's LYMPHOMA..and the lesion they
saw was caused from Lymphoma.  He is the only known case in the USA at this
time and is currently being written up in the Medical Journal because
lymphoma is NEVER found in the spinal cord.  It is so rare that they didn't
know what the correct course of treatment and the head of oncology at
Pennsylvania Hospital had to contact colleagues in various states to see if
they had any experience with this.  The good news is that the lymphoma is
curable...the bad news they don't have any history as to what the prognosis
could be regarding the damage done in the spine.  At this point he is much
worst mobility wise..he can only sit in the wheelchair for the max of 3
hours.  He is extremely weak but that could be the chemo.  We are going
tomorrow for his 3rd chemo treatment and we are going to ask lots of
questions because he is currently in a rehab and is not making any progress.
He has only been in our home for a total of 26 days since the end of August.
He has used up all of his Medicare hospital days and has dipped into his
live-time reserve hospital days.  It has been a long and grueling 5 months
and it doesn't look like it is getting any better.  Along the way he has had
pulmonary embolism, insertion of vena cava filter, pneumonia, a testicle
removed due to urinary tract infection, Atrial Defib due to the chemo
messing up his electrolytes.  He is totally incontinent with catheter and
diaper.  He use to be able to transfer using a walker now he has to use
transfer board because of the weakness.  Don't know what is going on and
hope to find out something tomorrow when he goes for treatment.  

 

Although he doesn't have TM,  I continue to read these emails because when
push comes to shove..it is a spinal cord injury regardless of what caused
it.  My heart aches for all of you as I read about pain, sensations, spasms,
seizures, medications, etc.  He too has some of this going on.  I pray for
his recovery but I also pray for each and every one of you!!!  It just isn't
fair that there isn't some cure that is available at a reasonable price to
each and every one of you.  I hope medical research quickly finds a way that
all of you affected by a spinal cord injury finds relief from the horror of
all of it and your lives can be restored to what you once had.  In the
meantime, stay positive, take one day at a time, pray, and keep a good
mental attitude.  Don't let this pull you down because if you do it will
only make your life and the people around you more miserable.  Find things
to do that will keep your mind off of what is going on in your body.  Dump
all of your problems on this fantastic resource when you are having a bad
day.  We are here for each other.  

 

Love and virtual hugs to each and every one of you!!!

 

Emily Meyers

New Jersey

 

  _  

From: Janice Nichols [mailto:jan...@centurytel.net] 
Sent: Tuesday, January 18, 2011 10:30 AM
To: em...@telephonelady.com; tmic-list@eskimo.com
Subject: Re: [TMIC] TM

 

It is my right leg that is affected and is the one that has been the weakest
all along. I may have to go to a lift, but my therapist says he can fix
me.We'll see.

Emily, what all can your husband do? How did TM leave him?

Janice

 

From: Emily <mailto:em...@telephonelady.com>  

Sent: Tuesday, January 18, 2011 5:53 AM

To: tmic-list@eskimo.com 

Subject: RE: [TMIC] TM

 

My husband has a 1" lift inside of his shoe that was made especially for him
due to the same problem..one leg shorter than the other.  The orthotic is
removable so he can put it in whatever shoe he wears. The one that is
shorter is the one that has been effected by the spinal cord injury.

 

  _  

From: L T CHERPESKI [mailto:cherp...@msn.com] 
Sent: Tuesday, January 18, 2011 12:20 AM
To: tmic-list@eskimo.com; Janice Nichols
Subject: Re: [TMIC] TM

 

Janice, 

 

I'm not sure if I wrote about it, but when I started another round of
physical therapy several months ago, the therapist found that my left leg
was one inch shorter than the right.  And that really doesn't surprise me
when I think about "walking/wobbling" with a cane for years.  Our gait is
slightly "off"  The therapist worked on me from top of my neck to my toes
for almost 2 hours, which didn't feel very good, but did I ever feel like a
new person when she 

RE: [TMIC] TM

[Emily]

My husband has a 1" lift inside of his shoe that was made especially for him
due to the same problem..one leg shorter than the other.  The orthotic is
removable so he can put it in whatever shoe he wears. The one that is
shorter is the one that has been effected by the spinal cord injury.

 

  _  

From: L T CHERPESKI [mailto:cherp...@msn.com] 
Sent: Tuesday, January 18, 2011 12:20 AM
To: tmic-list@eskimo.com; Janice Nichols
Subject: Re: [TMIC] TM

 

Janice, 

 

I'm not sure if I wrote about it, but when I started another round of
physical therapy several months ago, the therapist found that my left leg
was one inch shorter than the right.  And that really doesn't surprise me
when I think about "walking/wobbling" with a cane for years.  Our gait is
slightly "off"  The therapist worked on me from top of my neck to my toes
for almost 2 hours, which didn't feel very good, but did I ever feel like a
new person when she was done and I stood up!!

 

Good luck, hope it all goes well and you find the relief you're looking for.

 

Linda C (Eagle, ID)

- Original Message - 

From: Janice Nichols   

To: tmic-list@eskimo.com 

Sent: Monday, January 17, 2011 9:14 PM

Subject: [TMIC] TM

 

Dear Friends,

 

Some months ago, one of you wrote in asking if anyone had a problem with
maybe 1 leg being shorter than the other since having TM.At the time, I
had not heard

of that being a possibility.   I now know what whoever was talking
about.My legs are still the same length and my spine is straight, but I
am walking now as though

one leg is slightly longer than the other. It is caused by the myelitis
and they tell me with therapy, they can fix it  -  I hope.So, to
whoever wrote in asking about

that, I hope they got help for it.Something happens in the upper back
hip area. Anyway, I am working on fixing this and hope no one else has
this problem.  

 

Janice

RE: [TMIC] stem cell treatment for spinal cord lesions

[Emily]

My husband over the course of testing it was discovered that he might have
Lymphoma (non-hodgkins type so treatable and curable).  He is back in the
hospital to run further tests so they can make a diagnosis regarding the
lymphoma because previous tests were inconclusive.  So when I contacted his
Neuro yesterday with regards to John being a candidate for the Switzerland
trials of stem cell here is how she answered my email:

 

I think it is important that John getting the testing that we laid out
previously, as lymphoma would be treated much differently than other causes
of spinal cord injury (and stem cell treatment would have no role in that
case).  Prior to that evaluation being completed, I don't think that he
could be a candidate for this.  I believe this treatment is more aimed at
motor (not sensory) function, with which John has made significant strides
with PT.  Most of these studies are aimed at individuals with
para/quadraplegia.  I will see what I can find out, but I think it is a very
long shot.

 

He was admitted yesterday because his transfers were getting sloppy AGAIN
and it appeared that he was having a relapse AGAIN.  Each time he has been
given steroids and he responds fairly well and can walk about 100 feet with
a walker but then must get back in the wheelchair.  One of the treatments
for Lymphoma is steroids so this is why they are leaning more towards the
lymphoma.  Early on in this nightmare.in one of his MRI of thoracic spine
they saw a slightly enlarged lymph node which could be indicative to the
lymph system cleaning out the viral infection or lymphoma.  Since his TM is
idiopathic they keep looking for a reason and lymphoma in VERY RARE cases
can cause TM if it should wreak havoc in the spine.  Steroids is also how
they treat TM..so it is all so up in the air at this point but these tests
over the next few days should show something and if it is lymphoma they will
begin treatment.

 

It has been a very long and bumpy ride through this medical adventure.  John
began getting symptoms on August 10th, hospitalize on August 29th, Diagnosed
on September 4th with Idiopathic TM, and then it has been acute rehabs,
hospitalized in ICU for pulmonary embolism and insertion of vena cava
filter, back to rehab, home for 14 days, hospitalized for relapse, home for
5 days, hospitalized with pneumonia, home for 5 days, and now back in the
hospital with relapse and tests to diagnose lymphoma or not.  He has been
home a total of 24 days since August 29th...and whatever could go wrong has.

 

Hopefully even if it is lymphoma that is causing the TM, damage to the spine
has taken place and we hope that he will be a candidate for the trials in
Switzerland...time will tell and we are keeping our fingers crossed.   We
are hoping that it doesn't matter how the spinal cord gets injured to be a
candidate for these trials.

 

Thanks to this group for helping us get through a very difficult time right
now.  YOU are the only ones that could even imagine what he is going through
right now.  I am so thankful for finding this group.it has been so helpful.

 

Emily Meyers

For John Meyers T7 - T11

 

 

  _  

From: Janice Nichols [mailto:jan...@centurytel.net] 
Sent: Monday, November 15, 2010 11:28 PM
To: em...@telephonelady.com; tmic-list@eskimo.com
Subject: Re: [TMIC] stem cell treatment for spinal cord lesions

 

Sure hope your husband gets in the trial.Good luck.

Janice

 

From: Emily <mailto:em...@telephonelady.com>  

Sent: Monday, November 15, 2010 1:10 PM

To: tmic-list@eskimo.com 

Subject: RE: [TMIC] stem cell treatment for spinal cord lesions

 

My husband is currently in the 3-12 month window..he was diagnosed on
September 2nd with TM T-7-11.  We have contacted my husband's neurologist to
see if they could get him in this trial in Switzerland.  We are awaiting a
reply.  

 

  _  

From: Dalton Garis [mailto:malugss...@gmail.com] 
Sent: Monday, November 15, 2010 1:39 PM
To: fr...@franksheldon.com; tmic-list@eskimo.com; Garis, Brooks (Darien, CT)
Subject: Re: [TMIC] stem cell treatment for spinal cord lesions

 

Could it be the miracle mankind has been waiting for?  Just imagine if this
thing works!

Dalton

  _  

From: 
Date: Mon, 15 Nov 2010 14:10:01 +
To: 
Subject: [TMIC] stem cell treatment for spinal cord lesions
Resent-From: 
Resent-Date: Mon, 15 Nov 2010 06:10:06 -0800

News release:


StemCells, Inc. Files to Conduct Neural Stem Cell Trial in Chronic Spinal
Cord Injury
PALO ALTO, Calif., Nov 15, 2010 (GlobeNewswire via COMTEX) --StemCells, Inc.
(Nasdaq:STEM) announced today that is has filed an application with
Swissmedic, the Swiss regulatory agency for therapeutic products, to conduct
a clinical trial in Switzerland of the Company's HuCNS-SC(R) purified human
neural stem cells in chronic spinal cord injury patients. If authorized, the
study would enroll patients who are three to 12 months post-injury."With
this filing we have taken

[TMIC] My Husband's Update

[Emily]

 

I sent this update to our family and friends and wanted to share it with all
of you:

 

Dear Family & Friends:

 

Here is the latest on John:

 

Yesterday's spinal tap failed.  John's body doesn't give up spinal fluid
very easily.  This isn't the first time that it has happened.  As generous
as John is, he is a tad stingy when it comes to spinal fluid!!  So the
spinal tap has been put off for now and the lymph node biopsy is what will
give the doctors the information they need to make an accurate diagnosis.

 

He had surgery today to remove a lymph node under his arm so they can send
it to pathology to identify if he indeed has lymphoma and what type.  He has
a little soreness under his arm but no pain.  He was getting ready to rest
when I left this evening.  The doctor discussed the possibility of him going
home tonight but John didn't feel that he is comfortable yet in his mobility
so they are keeping him until physical therapy can get in to check his
mobility and decide if coming home is an option right now.

 

They treat lymphoma of this non-Hodgkin's type with chemotherapy and
steroids.  The brain and spinal cord is a protected area and just putting
chemo into his blood will not address the lesions that are in his spinal
cord/column.  They need to get the chemo into the spinal fluid.  His
resistance regarding the previous spinal taps dictates that they have to get
it in there in another way.  In the head there are 4 reservoirs that have
spinal fluid in themthey are like little cups.  They will have to drill
a hole into John's skull to put in a nickel size port (button like device)
under the skin so they can get the chemo into the spinal fluid.  Then
treatment can begin and each time he needs chemo they will put in the port
in his head.  They will also have to get the chemo in his blood as well.  Of
course this all hinges on the outcome of the pathology report on the lymph
node.  John is very pleased with Doctor Henry and trusts him and feels
confident that this is the right thing to do if necessary.  We are hoping
that lymphoma is the cause of his Transverse Myletis because if it is at
least there is a way to stop the lesions from getting any worse and causing
more damage.

 

He had his first dose of steroids late this afternoon and the steroids
usually help John rather quickly so hopefully tomorrow he will start feeling
stronger.  I will send another email out to the group as news becomes
available.  Until then please continue to keep John in your daily prayers.
If your place of worship will allow you to put John on their prayer list,
please do so, as this means so much to the both of us.

 

Love to all,

 

Emily

 

RE: [TMIC] stem cell treatment for spinal cord lesions

[Emily]

My husband is currently in the 3-12 month window..he was diagnosed on
September 2nd with TM T-7-11.  We have contacted my husband's neurologist to
see if they could get him in this trial in Switzerland.  We are awaiting a
reply.  

 

  _  

From: Dalton Garis [mailto:malugss...@gmail.com] 
Sent: Monday, November 15, 2010 1:39 PM
To: fr...@franksheldon.com; tmic-list@eskimo.com; Garis, Brooks (Darien, CT)
Subject: Re: [TMIC] stem cell treatment for spinal cord lesions

 

Could it be the miracle mankind has been waiting for?  Just imagine if this
thing works!

Dalton



  _  

From: 
Date: Mon, 15 Nov 2010 14:10:01 +
To: 
Subject: [TMIC] stem cell treatment for spinal cord lesions
Resent-From: 
Resent-Date: Mon, 15 Nov 2010 06:10:06 -0800

News release:


StemCells, Inc. Files to Conduct Neural Stem Cell Trial in Chronic Spinal
Cord Injury
PALO ALTO, Calif., Nov 15, 2010 (GlobeNewswire via COMTEX) --StemCells, Inc.
(Nasdaq:STEM) announced today that is has filed an application with
Swissmedic, the Swiss regulatory agency for therapeutic products, to conduct
a clinical trial in Switzerland of the Company's HuCNS-SC(R) purified human
neural stem cells in chronic spinal cord injury patients. If authorized, the
study would enroll patients who are three to 12 months post-injury."With
this filing we have taken a tangible step to broaden the clinical
development of our HuCNS-SC product candidate beyond the brain and into the
spinal cord," said Martin McGlynn, President and CEO of StemCells, Inc.
"This exciting initiative is supported by extensive preclinical research
demonstrating the ability of our proprietary cells to restore lost motor
function when transplanted in the chronic spinal cord injury setting. The
prospect of extending the treatment window to months or longer following
injury would mean that a much larger population of injured patients could
potentially benefit from such an approach."

RE: [TMIC] {TMIC}sweating

[Emily]

One of my husbands first symptoms was night sweats.  The first time it
happened I thought he had wet the bed because I couldn't believe that
someone could sweat that much.  This continued off and on for about 4 months
before any other symptoms occurred.  He was treated with steroids and the
night sweats went away.  Recently, he had a relapse and the night sweats
came back.  He went back on steroids..night sweats went away.

 

Emily Meyers

Wife of John Meyers T7-T11

 

  _  

From: Dalton Garis [mailto:malugss...@gmail.com] 
Sent: Wednesday, November 10, 2010 10:54 PM
To: kevin weilacher; rn11...@yahoo.com; tmic-list@eskimo.com
Subject: Re: [TMIC] {TMIC}sweating

 

Some of these nite-sweats are related to the medications.  Before TM I
sweated at night because I took medications for other conditions.  It didn't
get worse when I got TM so I would sugest we look at the medications for an
answer to at least some of these nite-sweat problems.

Dalton

  _  

From: kevin weilacher 
Date: Wed, 10 Nov 2010 09:42:32 -0800 (PST)
To: "rn11...@yahoo.com" , 
Subject: Re: [TMIC] {TMIC}sweating
Resent-From: 
Resent-Date: Wed, 10 Nov 2010 09:42:34 -0800

I have been totally confused about the sweating issue ever since TM hit
me
My lesions are L4, L5 and S1 and now since TM, the only place I sweat is my
head and when I sweat, I sweat profusely, I mean to the point that it drips
off my nose and down the sides of my head...

I sweat no other place on my body, even during the summer on hot days
outside. I get warm, but I do not sweat. No underarm sweat, nothing.

  _  

From: "rn11...@yahoo.com" 
To: tmic-list@eskimo.com
Sent: Wed, November 10, 2010 9:30:57 AM
Subject: [TMIC] {TMIC}sweating

Hi Everyone,
I got tm at the thoracic level (T4-5),but when I perspire on my face,one
side gets red and moist,the other stays pale and dry. No one has ever had an
explanation for this.A couple of docs even suggested that maybe I always had
this and just noticed it after tm! 
 Cheryl in Easthampton,MA

 

 

RE: [TMIC] Brown Sequard Syndrome

[Emily]

After reading about Brown-Sequard Syndrome it sounds almost exactly like
Transverse Myletis.  I wonder how the distinction can be made when trying to
make a diagnosis?

 

  _  

From: fr...@franksheldon.com [mailto:fr...@franksheldon.com] 
Sent: Tuesday, November 02, 2010 9:49 AM
To: Carol E; tmic-list@eskimo.com
Subject: [TMIC] Brown Sequard Syndrome

 

 

Carol,





Google Brown-Sequard Syndrome.





I was afflicted with TM in August 2000. I had sensitivity and pain on my
right side of my body. My lesion was at C-6 on the right of my spinal cord.
In August 2001, 12 months later, I began having horrible, severe pain on my
left side from the base of my neck down.  I called my Doctor, Doug Kerr, who
laughed and told me "Brown- Sequard Syndrome, Look it up."





I'm sure you will be an expert within a few hours





F

[TMIC] Bladder Control

[Emily]

 

My husband is on Detrol.  During the day he passes his urine with 3-4 hour
intervals.  During the night..in 6-7 hours he is up every 1-2 hours passing
his urine.  I thought..okay maybe he is taking the Detrol at the wrong time
of day so we switched it from bedtime to morning and it made no difference.
Is there anyone else out there that has this same problem?  Why would the
Detrol work during the day and not at night? Prior to Detrol he was passing
urine every 30-45 minutes!!

RE: [TMIC] Berkeley Bionics Exoskeleton

[Emily]

 

This is truly amazing..did you watch the video..AMAZING!

 

 

  _  

From: Beeclark [mailto:beecl...@aol.com] 
Sent: Saturday, October 09, 2010 3:04 PM
To: tmic-list@eskimo.com; transversemyelitissupp...@yahoogroups.com
Subject: [TMIC] Berkeley Bionics Exoskeleton

 

Saw this on television Wednesday night... availability to the average person
can't come too soon!!

Betty

(in Northern California)

 

 

http://blogs.discovermagazine.com/80beats/2010/10/08/a-new-exoskeleton-allow
s-paralyzed-people-to-walk-again/

 

RE: [TMIC] Fwd: Good Idea!

[Emily]

Maybe putting Off Topic in the subject line than people who don't want to go
off topic can hit the delete button and that way both groups of people can
take advantage of this wonderful source of TM information.  As I said, I am
new and both my husband and I are like sponges right now trying to get as
much information about TM as possible.  We want to hear the good things and
the bad things that are associated with this disorder.  I pray that everyone
here that suffers from TM is someday cured but until then I believe we need
the support of each other to get through the tough times.

 

Emily

 

  _  

From: Patricia Cooley [mailto:patticoole...@gmail.com] 
Sent: Tuesday, October 05, 2010 10:05 AM
To: 'Janice Nichols'; em...@telephonelady.com; Tmic-list@eskimo.com
Subject: RE: [TMIC] Fwd: Good Idea!

 

I COULDN'T AGREE WITH YOU MORE, JANICE.  MOST OF OUR POSTS ARE ALL ABOUT TM,
BUT I PERSONALLY ENJOY THE BREAK TO DISCUSS OR READ ABOUT OTHER TOPICS.

 

PATTI

 

From: Janice Nichols [mailto:jan...@centurytel.net] 
Sent: Tuesday, October 05, 2010 8:34 AM
To: em...@telephonelady.com; Tmic-list@eskimo.com
Subject: Re: [TMIC] Fwd: Good Idea!

 

It is about TM - 95% of the time.But, as we get to know each other,
these discussions, I feel, add to the interest of the website. Many with
TM are closed in much

of the time and would like to be able to discuss different topics as an
outlet.  We are all friends here, and friends do not always talk about 1
topic, they vary the

topics.If you wish to, you can just delete these few discussions.
But, remember, it is also an emotional/mental outlet for us all and that is
also why the website

is here.   It is good for us to have other things on our minds besides TM,
although that is the main topic here. We hope you will contribute to all
discussions.

Janice

 

From: Emily <mailto:em...@telephonelady.com>  

Sent: Tuesday, October 05, 2010 2:50 AM

To: Tmic-list@eskimo.com 

Subject: RE: [TMIC] Fwd: Good Idea!

 

Is this the right forum for this discussion?  If it is, how do I remove
myself from the TMIC list?  I get enough of this kind of email from other
sources and really don't want to see it here when this is a Transverse
Myletis discussion list.  I'm new here and I'm sorry for feeling this way
but I thought it was going to be about TM.

 

  _  

From: Dalton Garis [mailto:malugss...@gmail.com] 
Sent: Tuesday, October 05, 2010 12:42 AM
To: bgunny7...@aol.com; Tmic-list@eskimo.com
Subject: Re: [TMIC] Fwd: Good Idea!

 

Let's be clear:

Those persons who destroyed the Twin Towers in my City while I watched, were
NOT MUSLIMS.  They had twisted things like a New York Pretzel to have it do
what they wanted of it-taking things out of context and making a god out of
an evil and corrupt leader who signed off on killing the innocent.  

Their motto was "Kill them all and let the Lord sort them out."

Shall we ban Christian churches all over Europe because the Germans were
Christian?  Shall we ban temples in the Far East because the Japanese were
Shinto Buddhists?  There have been 13 years of war for every year of Peace
since the Advent of His Holiness Jesus.  Shall we ban Christian worship?

Let's sort it out in our minds!  Forever man has committed the most
atrocious of acts in the name of their religion.  But we see that it is
because there is too little true religion today, not too much, which is the
root cause of so many of our problems, in our streets and in our skies.

No: It is because those murderers knew too little of the Qur'an that they
committed such evil, not too much.  They knew nothing of the Qur'an or Islam
in the Name of which they killed so many.

I say, if people want to sincerely worship God, let them.  There is too
little of this, not too much.

Dalton

  _  

From: 
Date: Mon, 4 Oct 2010 16:04:09 EDT
To: 
Subject: [TMIC] Fwd: Good Idea!
Resent-From: 
Resent-Date: Mon, 4 Oct 2010 13:04:45 -0700

RE: [TMIC] Fwd: Good Idea!

[Emily]

Is this the right forum for this discussion?  If it is, how do I remove
myself from the TMIC list?  I get enough of this kind of email from other
sources and really don't want to see it here when this is a Transverse
Myletis discussion list.  I'm new here and I'm sorry for feeling this way
but I thought it was going to be about TM.

 

  _  

From: Dalton Garis [mailto:malugss...@gmail.com] 
Sent: Tuesday, October 05, 2010 12:42 AM
To: bgunny7...@aol.com; Tmic-list@eskimo.com
Subject: Re: [TMIC] Fwd: Good Idea!

 

Let's be clear:

Those persons who destroyed the Twin Towers in my City while I watched, were
NOT MUSLIMS.  They had twisted things like a New York Pretzel to have it do
what they wanted of it-taking things out of context and making a god out of
an evil and corrupt leader who signed off on killing the innocent.  

Their motto was "Kill them all and let the Lord sort them out."

Shall we ban Christian churches all over Europe because the Germans were
Christian?  Shall we ban temples in the Far East because the Japanese were
Shinto Buddhists?  There have been 13 years of war for every year of Peace
since the Advent of His Holiness Jesus.  Shall we ban Christian worship?

Let's sort it out in our minds!  Forever man has committed the most
atrocious of acts in the name of their religion.  But we see that it is
because there is too little true religion today, not too much, which is the
root cause of so many of our problems, in our streets and in our skies.

No: It is because those murderers knew too little of the Qur'an that they
committed such evil, not too much.  They knew nothing of the Qur'an or Islam
in the Name of which they killed so many.

I say, if people want to sincerely worship God, let them.  There is too
little of this, not too much.

Dalton




  _  

From: 
Date: Mon, 4 Oct 2010 16:04:09 EDT
To: 
Subject: [TMIC] Fwd: Good Idea!
Resent-From: 
Resent-Date: Mon, 4 Oct 2010 13:04:45 -0700

RE: [TMIC] Anyone else in Hawaii

[Emily]

To whoever is in charge of maintaining the directory..we are new..please add
my husband's name to the directory:

 

John Meyers

37 Vandevere Lane

Columbus, NJ 08022

609-324-3724

10/14/40

 

Thanks!

 

  _  

From: Patricia Cooley [mailto:patticoole...@gmail.com] 
Sent: Friday, October 01, 2010 9:53 AM
To: kimharrison...@comcast.net; tmic-list@eskimo.com
Cc: tmic-list@eskimo.com
Subject: RE: [TMIC] Anyone else in Hawaii

 

YESTERDAY, I SCANNED THE PAGE IN THE DIRECTORY WHICH LISTED THE MEMBERS IN
HAWAII AND SENT IT ON TO JAMES.  I ALSO MENTIONED THE DIRECTORY IS SEVERAL
YEARS OLD AND MAY NOT BE UP-TO-DATE.  I UNDERSTAND A NEW DIRECTORY IS IN THE
WORKS.

 

I HOPE IT HELPS TO PUT HIM IN TOUCH WITH OTHER TMers.

 

PATTI - WISCONSIN

 

 

 

From: kimharrison...@comcast.net [mailto:kimharrison...@comcast.net] 
Sent: Thursday, September 30, 2010 8:27 PM
To: tmic-list@eskimo.com
Cc: tmic-list@eskimo.com
Subject: Re: [TMIC] Anyone else in Hawaii

 

Looks like James is new to the group, I cant figure it out but can someone
please  send him the link on how to find the support groups and where they
are? I looked on the TM site but Hawaii was not listed

 

United States 

*   Alaska TM Support 
Group 
*   Arkansas TM 
Support Group 
*   Arizona TM Support Group
  
*   California TM 
Support Group 
*   Colorado TM 
Support Group 
*   Florida TM Support Group   
* GA - The CSRA TM
Support Group 
*   Idaho TM Support Group   
*   Illinois Support 
Group 
*   Kentucky TM Support Group   
*   Louisiana TM 
Support Group 
*   Maine TM Support 
Group 
*   Maryland/DC TM Support 
Group 
*   Massachusetts TM Support
  Group 
*   Michigan TM 
Support Group 
*   Minnesota TM 
Support Group 
*   Mississippi TM 
Support Group 
*   Missouri TM 
Support Group 
*   New England Tri-State 
Area Support Group 
*   New Jersey TM Support 
Group 
*   New York TM Support 
Group 

*   Western New York 
area TM Support Group 

*   North Carolina TM 
Support Group 
*   Ohio TM Support Group 

*   Pacific Northwest 
(Washington, Oregon, Alaska, Idaho and Britsh Columbia) TM Support Group 
*   Pennsylvania TM Support 
Group 
* SC - The CSRA TM
Support Group 
*   Tennessee TM Support 
Group 
*   Texas Tranverse Myelitis Coalition   
*   Virginia TM Support 
Group 
*   Wisconsin TM 
Support Gro

 


- Original Message -
From: "Deborah Nord Capen" 
To: "Janice Nichols" , "James Berg"
, tmic-list@eskimo.com
Sent: Thursday, September 30, 2010 12:31:54 AM
Subject: RE: [TMIC] Anyone else in Hawaii

According to the directory, there are about a half dozen TMA members in
Hawaii.

 

 

From: Janice Nichols [mailto:jan...@centurytel.net] 
Sent: Wednesday, September 29, 2010 8:18 PM
To: James Berg; tmic-list@eskimo.com
Subject: Re: [TMIC] Anyone else in Hawaii

 

As far as I remember, I think you are it.We have members from Holland,
Australia, Brazil, Abu Dhabi, West Coast, East Coast, and in between.   But,
have

not heard from anyone in Hawaii.  Remember, TM is extremely rare.
Good Luck though.

Janice

 

 

From: James   Berg 

Sent: Wednesday, September 29, 2010 5:04 PM

To: tmic-list@eskimo.com 

Subject: [TMIC] Anyone else in Hawaii

 

I would like to know if I am the only person with TM in Hawaii.  I would
like to correspond with TM patients in my state. 

[TMIC] New to TM

[Emily]

Thank you to everyone who responded to my initial email.  It is wonderful to
know that I am not in this alone.  I guess misery likes company ;)

 

Let me tell you a little about how we came to find out that my husband has
TM.  At the beginning of August my husband was getting constipated which is
something that NEVER happens he is like clockwork each morning.  After
playing with this for about 1 week taking laxatives, etc. he began to get a
numbing feeling in his lower left abdomen.  This scared him so he made an
appointment with our regular family doctor.  Our doctor sent him for a cat
scan of the digestive system and it was negative.  Then he sent him for a
colonoscopy on August 25th.  On the morning of the colonoscopy he couldn't
get out of bed because his left leg was totally numb.  I had a walker in the
garage from a previous broken ankle so I went and got him the walker and I
took him to get the colonoscopy.  This frightened me so while I was waiting
for him to come out of recovery I called our family doctor and told him
about the total numb left leg and he said to bring him into the office the
following day.  The family doctor said he wanted him to go for an MRI of the
lower lumbar so the following Monday (August 30th).  While we were waiting
for that Monday to roll around the numbing got worse and he lost all use of
the leg he described as dead and he was also antsy..he couldn't sit still or
lay down..he seemed very agitated.  During the early hours of August 30th he
fell in the bedroom trying to use the urinal while holding onto the walker.
I couldn't get him off the floor nor could he help me because of the dead
leg so I called 911.  He was taken to our local hospital's emergency ward
and they cat scanned his head looking for a stroke but the cat scan was
negative showing no signs of stroke.  He was discharged at 8AM on August
30th and I took him directly to the MRI he was scheduled for that day.  The
MRI showed some stenosis in the lower lumbar region but not enough to cause
this kind of numbness so our family doctor got us an emergency appointment
with a neurosurgeon on Tuesday August 31st.  He was admitted to the
Pennsylvania Hospital in Philadelphia right from the doctor's office and
additional MRIs of the thoracic spine were taken and then another one with
contrast and it was in these MRIs where they could see abnormalities
(lesions).  He was then turned over to a team on neurologists and more tests
(cat scans, blood tests, MRIs, and spinal taps) were taken.  He was also
tested for every known viral and/or immune disease known to mankind to
include Lupus, Lyme, Herpes, HIV, Hepatitis, just to name a few.  On
September 3rd he was diagnosed with Idiopathic TM and that evening he was
given 1000 mg of prednisone.  He had 5 of these treatments and then released
to an Acute Rehabilitation Hospital which is where he is right now and has
been since September 9th.  He is currently being weaned orally off of the
steroids.  He is showing progress but it is slow.  He does now have the
ability to lift his left leg but it is still totally numb and he must look
down to see where his foot his before taking a step with the walker and
assistance from the PT staff.  He has no pain and the antsiness seems to
have disappeared.  I am now in the process of getting our toilets in our
home changed to the higher off the ground toilets with grab bars installed
on either side of the toilet and grab bars installed inside the shower.  I
am also getting the glass shower doors to our walk in shower taken down and
I will replace them with a heavy duty shower curtain.  Luckily we live in a
one story home on a concrete slab and there are no steps that he will have
to deal with.

 

That's my story...and I am sticking to it..LOL  I am sure it is similar to
many others in this group.  I don't like how I found all of you but I must
say that I am glad you are right here at my keyboard and over the next few
months I am sure I will have lots of questions.  Thank you so much for being
here even though it isn't in the best of circumstances of meeting people.  

 

Love to all of my new TM family..God bless all of you,

Emily Meyers

Columbus, New Jersey

RE: [TMIC] Question

[Emily]

Idiopathic means they don't know what caused the TM.  

-Original Message-
From: jack...@att.blackberry.net [mailto:jack...@att.blackberry.net] 
Sent: Thursday, September 16, 2010 11:57 PM
To: TMIC
Subject: [TMIC] Question

What's the difference between idopathic tm and just tm ? Diagnosed with
idopathic tm 2007 -memphis tn. :)
Sent via BlackBerry by AT&T

[TMIC] New to TM

[Emily]

Hi Everyone,

 

My husband has recently (September 2nd) been diagnosed with Idiopathic TM.
He was treated at Pennsylvania Hospital under the care of a team of
Neurologists.  He was given mega doses of Prednisone and is currently
weaning with oral prednisone.  He was discharged from the hospital last
Thursday and he is now working hard at an acute rehabilitation center (3-5
hours each day).   He has a very positive outlook and is "taking it one day
at a time".   

 

My question is this..is there a support group for spouses of TM?

 

Emily

 

 

Life is not measured by the number of breaths that we take 

but by the moments that take our breath away.



 

<>