RE: [TMIC] question

[Tim Holder (Work)]

Tracey,

Isn't it odd how we interpret the "severity" of our cases?  I have had TM for 
about a year and a half.  I have lost bladder function, some numbness (burning, 
pin-pricks) in my feet and legs, but no paralasys.  Only a minor gait 
disturbance.  Fatigue is also huge with me.  But, I haven't lost all function 
in any part of my body, besides the bladder.  So, to me, I would say my 
symptoms are much less than your daughters.  Hers sound very severe to me.  So, 
would I be more at risk than her to develop MS?  And, exponentially, would she 
be more at risk than say someone with total paralysis?  I would say yes.  BUT, 
like Gerry said...my neuro told me there was really no conclusive evidence that 
TM and MS are more related than cousins.  That the symptoms mirror each other 
in type, but not in overall severity, and certainly not in progression.

Tim

Tim Holder
Worship Leader for
Celebrate Recovery
[EMAIL PROTECTED]
(501)224-7171 ext. 1454
Fellowship Bible Church
1901 Napa Valley Drive
Little Rock, AR 72212-3913





-Original Message-
From: Gerry Surette [mailto:[EMAIL PROTECTED]
Sent: Friday, February 29, 2008 9:46 AM
To: tmic-list@eskimo.com
Cc: [EMAIL PROTECTED]
Subject: RE: [TMIC] question

Hi Tracy it is I Gerry I have had tm since I was 21 had two relapses and
since 2001 have had it back with a vengence; now to answer your question.
just because your daughter{god blees her} has tm does not necessaryily mean
that she will get ms. The numerous articles I have read just SUGGEST that
the symptoms are similar THAT IS AL. There is no evidence I have
seen whereby tm leeds to ms. And having TM does not reduce your life span. I
have questioned my neuro on the subject and as all doctors do skimmed around
the subject.the best thing to do is consult your md. Since I joined this
group the subject of life span has come up. TM does not reduce life span so
I saith; so it is written soo it shall be


>From: "Tracey L. Black" <[EMAIL PROTECTED]>
>To: 
>Subject: RE: [TMIC] question
>Date: Fri, 29 Feb 2008 09:24:13 -0500
>
>  Ok, now I have a question. In the link that Gerry provided us (Thanks
>Gerry) I found the following:
>"It is also suggested in the medical literature that patients with
>"complete" transverse myelitis (which means severe leg paralysis and
>sensory loss) are less likely to develop MS than those who had a partial
>or less severe case."
>Has anyone on here experienced this? In case some of you don't remember,
>my daughter who is now 14 was hit with TM when she was 11. She basically
>had paralysis from her thighs down but also lost her bowel and bladder
>function. Three years later (and a lot of hard work) she is walking with
>forearm crutches and braces on  her legs. I have always thought of her
>case as a less severe case because she was not hit like a lot of others
>with loss from her chest down or even full paralysis and according to
>what I am reading it seems like she is more likely to get MS than those
>that had a severe case of TM. When Ashlee first got TM (also combined
>with GBS) I read about her condition and tried to get myself, my family,
>and especially her prepared for the worst case scenario. We have been so
>blessed that she is able to independently take care of herself, and
>pretty has, since she started walking again. Now that I am reading up on
>it again, I am really concerned.
>Any insight would be greatly appreciated!
>
>
>Tracey L. Black
>Certified Insurance Service Representative
>Hockley & O'Donnell Insurance Agency
>Phone - 717-334-6741, x 29
>Fax - 717-334-3414
>
>
>Thank you for providing information to us. Please beware that no
>coverage is bound and no change to your insurance program is confirmed
>until verified by a licensed agent during regular business hours. If you
>do not hear from us within 1 business day, please re-contact us in case
>your information has not been retained.
>
>
>-Original Message-
>From: Gerry Surette [mailto:[EMAIL PROTECTED]
>Sent: Friday, February 29, 2008 7:02 AM
>To: tmic-list@eskimo.com
>Subject: Re: [TMIC] reITP
>
>Thanks Linda; you will find the correlation of Itp and tm on page4 of
>the acticleTransverse myelitis: symtons, causes and diagnosis at at our
>own sight www.myelitis.org/tm.htm. I was surprised as you fo find that
>out. My neuro never mentioned it to me but sent me to an oncologist.
>
> >From: "L T CHERPESKI" <[EMAIL PROTECTED]>
> >To: ,"Gerry Surette" <[EMAIL PROTECTED]>
> >Subject: Re: [TMIC] reITP
> >Date: Thu, 28 Feb 2008 22:06:41 -0700
> >
> >Hi Gerry, thanks for letting us know that you will be in the hospital.
>
> >You will definitely be in my thoughts and prayers.  I like your
> >attitude - one week of bliss, just being HIGH.  That will be a nice
> >reprieve.  It's interesting that this has come up. I have TM and my
>granddaughter has ITP.
> >I've gone to medical seminars on ITP with my family so I do understand
> >about the disease.  It's been a while since I've done any research and
> >I

RE: [TMIC] TMA So. California Symposium

[Tim Holder (Work)]

I didn't even know there WAS a Seattle, California.

Tim Holder
Worship Leader for
Celebrate Recovery
[EMAIL PROTECTED]
(501)224-7171 ext. 1454
Fellowship Bible Church
1901 Napa Valley Drive
Little Rock, AR 72212-3913




From: Cindy McLeroy [mailto:[EMAIL PROTECTED]
Sent: Monday, January 14, 2008 4:14 PM
To: [EMAIL PROTECTED]; [EMAIL PROTECTED]; tmic-list@eskimo.com
Subject: Re: [TMIC] TMA So. California Symposium

Rick, Pam, the So. California Symposium is being held in Anaheim, CA.  Not 
Seattle.  There will be a Symposium in Seattle, but it will be this summer.
This might give you more time to save $$ or your plans may allow you to go to 
Seattle.  The Anaheim meeting is in February, the Seattle is in July, I think.

- Original Message -
From: [EMAIL PROTECTED]
To: [EMAIL PROTECTED] ; 
tmic-list@eskimo.com
Sent: Monday, January 14, 2008 3:56 AM
Subject: Re: [TMIC] TMA So. California Symposium

YES RICK, YOU NEVER KNOW. YOU MIGHT GET THERE. GOD IS POWERFUL. I WILL PRAY 
THAT THINGS WORK OUT SO YOU CAN GO.
GOD BLESS TIAD PAM

In a message dated 1/13/2008 11:01:15 P.M. Central Standard Time, [EMAIL 
PROTECTED] writes:
Its a crying shame that I,m not going to financially be able to get to the  
symposium in Seattle this year there will  be for me. There are many things 
that I need to know, from some of the members its a shame.Oh well if there is a 
way then God will find me a way. I believe it is so. Rick

--
GOD BLESS US ALL>


-- Original message --
From: [EMAIL PROTECTED]
>
> I WISH I COULD GO BUT I AM GOING TO SEE DR. KERR 2 MONTHS LATER THEN TO MY
> SONS IN WV. I WOULD LOVE TO MEET SO MANY OF YOU. HAVE A GREAT TIME LIKE JENNA
> SAID!!!
>   PAM
>
>
> In a message dated 1/13/2008 9:22:14 A.M. Central Standard Time,
> [EMAIL PROTECTED] writes:
>
>
>
> I am so happy for those of you that live closes enough to go to this. I'm
> sure you will learn so much!  Have fun and let us know how it  goes.
>
> Jenna
>
>
> -  Original Message 
> From: Deborah Nord Capen  <[EMAIL PROTECTED]>
> To: tmic-list@eskimo.com
> Sent: Sunday,  January 13, 2008 12:06:35 AM
> Subject: [TMIC] TMA So. California  Symposium
>
> The arrangements have been  finalized, the contracts have been signed.  We
> are going to have a  one-day symposium in Southern California!  Chitra 
> Krishnan,
> Dr. Kerr, Dr.  Kaplin, Dr. Pidcock, and Dr. Levy will all be at the Paradise
> Pier hotel, next  door to the Disneyland Hotel in Anaheim, California on
> Saturday,  February 23 for one day only!
>
> We have reserved a block of rooms  for those of you who want to travel in and
> spend the night to see our  wonderful doctors and hear them speak.  The rooms
> are available on Friday  and Saturday nights for $165.00 a night plus  taxes.
>  The registration fee for the Saturday conference is only  $50.00, which will
> cover the cost of the continental  breakfast, the lunch and the meeting room.
>  We had to do a lot of  negotiating to get this super price.
>
> The details will be up on the  website at _www.myelitis.org_
> (http://www.myelitis.org/)  by Wednesday, but if you can't  wait, please email
> me and I can
> give you the details sooner.
>
> Please, if you live near Southern  California, seriously consider coming and
> meeting our doctors who have been  working so hard for all of us to make our
> lives so much easier for all of  us.
>
> Take care,
> Debbie Capen
> [EMAIL PROTECTED] (mailto:[EMAIL PROTECTED])
>  (mailto:[EMAIL PROTECTED])
>
>
>
>
>
>
> 
> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. _Try  it
> now._
> (http://us.rd.yahoo.com/evt=51733/*http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtD
> ypao8Wcj9tAcJ)
>
>
>
>
> **Start the year off right.  Easy ways to stay in shape.
> http://body.aol.com/fitness/winter-exercise?NCID=aolcmp0030002489




Start the year off right. Easy ways to stay in 
shape in 
the new year.

RE: [TMIC] October Birthdays

[Tim Holder (Work)]

Okay, and I memorized the quote at the bottom of someone’s emails about fear 
stealing our strength for today and now I’ve forgotten it.  I need to have 
that.  It bolsters me.

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 

From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Tuesday, October 02, 2007 8:49 AM
To: Tim Holder (Work); tmic-list@eskimo.com
Subject: Re: [TMIC] October Birthdays

 

Hi Tim,

 

Now that I know about your birthday -- which I didn't before -- I'll add you to 
the list. :-)

 

To all -- I only know if people tell me when their birthdays are, which is why 
I put the little addendum every month about letting me know if there are any 
additions or corrections. If any of you are new the last few years and don't 
know if you're birthday is on the master list and want to be remembered, let me 
know -- you don't have to wait til the month of your birthday to send it in.

 

Tim, I so agree with what you said about a Father who loves us and grieves with 
us and goes with us every step of the way. Your last few sentences reminded me 
of one passage I lean heavily on from I Corinthians 12:

 

8 For this thing I besought the Lord thrice, that it might depart from me. 

 9 And he said unto me, My grace is sufficient for thee: for my strength is 
made perfect in weakness. Most gladly therefore will I rather glory in my 
infirmities, that the power of Christ may rest upon me. 

 10 Therefore I take pleasure in infirmities, in reproaches, in necessities, in 
persecutions, in distresses for Christ's sake: for when I am weak, then am I 
strong. 

I can't honestly say I "take pleasure" in my infirmities yet, but I do know His 
grace is sufficient, and I take pleasure in that.

 

Barbara H.

http://barbarah.wordpress.com/ <http://barbarah.wordpress.com/> 

 

 

In a message dated 10/2/2007 9:38:42 AM Eastern Daylight Time, [EMAIL 
PROTECTED] writes:

Okay, I’m highly offended.  My birthday is October 8th.  And was I 
mentioned  NNnnnooo  J  

 

Seriously,  I am so proud to be hangin’ with you all on this list.  I 
learn so much just from reading the emails and it’s so great to know I’m not 
the only one out there.  I know that my symptoms of TM are nowhere near what 
you all go through every second of every day.  But, I do want you all to know 
that I am convinced there is a Father who travels this journey with us.  And I 
pray for this list every single day.  God is not sleeping while we hurt.  And 
He grieves loss with us.  I have told Him many times to take this from me if 
it’s possible.  But, if it keeps me dependent on Him and keeps me focused on 
Him, then I’ll gladly bear it.  Well, okay, maybe not gladly…but I’ll do it.  
You guys are all AWESOME!  And I’m very thankful for you.

 

Under His Grace,

Tim

 

Tim Holder

 







See what's new at AOL.com <http://www.aol.com?NCID=AOLCMP0030001170>  and 
Make AOL Your Homepage 
<http://www.aol.com/mksplash.adp?NCID=AOLCMP0030001169> .

RE: [TMIC] October Birthdays

[Tim Holder (Work)]

You are awesome.

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 

From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Tuesday, October 02, 2007 8:49 AM
To: Tim Holder (Work); tmic-list@eskimo.com
Subject: Re: [TMIC] October Birthdays

 

Hi Tim,

 

Now that I know about your birthday -- which I didn't before -- I'll add you to 
the list. :-)

 

To all -- I only know if people tell me when their birthdays are, which is why 
I put the little addendum every month about letting me know if there are any 
additions or corrections. If any of you are new the last few years and don't 
know if you're birthday is on the master list and want to be remembered, let me 
know -- you don't have to wait til the month of your birthday to send it in.

 

Tim, I so agree with what you said about a Father who loves us and grieves with 
us and goes with us every step of the way. Your last few sentences reminded me 
of one passage I lean heavily on from I Corinthians 12:

 

8 For this thing I besought the Lord thrice, that it might depart from me. 

 9 And he said unto me, My grace is sufficient for thee: for my strength is 
made perfect in weakness. Most gladly therefore will I rather glory in my 
infirmities, that the power of Christ may rest upon me. 

 10 Therefore I take pleasure in infirmities, in reproaches, in necessities, in 
persecutions, in distresses for Christ's sake: for when I am weak, then am I 
strong. 

I can't honestly say I "take pleasure" in my infirmities yet, but I do know His 
grace is sufficient, and I take pleasure in that.

 

Barbara H.

http://barbarah.wordpress.com/ <http://barbarah.wordpress.com/> 

 

 

In a message dated 10/2/2007 9:38:42 AM Eastern Daylight Time, [EMAIL 
PROTECTED] writes:

Okay, I’m highly offended.  My birthday is October 8th.  And was I 
mentioned  NNnnnooo  J  

 

Seriously,  I am so proud to be hangin’ with you all on this list.  I 
learn so much just from reading the emails and it’s so great to know I’m not 
the only one out there.  I know that my symptoms of TM are nowhere near what 
you all go through every second of every day.  But, I do want you all to know 
that I am convinced there is a Father who travels this journey with us.  And I 
pray for this list every single day.  God is not sleeping while we hurt.  And 
He grieves loss with us.  I have told Him many times to take this from me if 
it’s possible.  But, if it keeps me dependent on Him and keeps me focused on 
Him, then I’ll gladly bear it.  Well, okay, maybe not gladly…but I’ll do it.  
You guys are all AWESOME!  And I’m very thankful for you.

 

Under His Grace,

Tim

 

Tim Holder

 







See what's new at AOL.com <http://www.aol.com?NCID=AOLCMP0030001170>  and 
Make AOL Your Homepage 
<http://www.aol.com/mksplash.adp?NCID=AOLCMP0030001169> .

RE: [TMIC] October Birthdays

[Tim Holder (Work)]

Okay, I'm highly offended.  My birthday is October 8th.  And was I
mentioned  NNnnnooo  J  

 

Seriously,  I am so proud to be hangin' with you all on this list.  I
learn so much just from reading the emails and it's so great to know I'm
not the only one out there.  I know that my symptoms of TM are nowhere
near what you all go through every second of every day.  But, I do want
you all to know that I am convinced there is a Father who travels this
journey with us.  And I pray for this list every single day.  God is not
sleeping while we hurt.  And He grieves loss with us.  I have told Him
many times to take this from me if it's possible.  But, if it keeps me
dependent on Him and keeps me focused on Him, then I'll gladly bear it.
Well, okay, maybe not gladly...but I'll do it.  You guys are all
AWESOME!  And I'm very thankful for you.

 

Under His Grace,

Tim

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]  

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 

From: Jan Hargrove [mailto:[EMAIL PROTECTED] 
Sent: Tuesday, October 02, 2007 8:19 AM
To: tmic-list@eskimo.com
Subject: Re: [TMIC] October Birthdays

 

Happy Birthday to all you October babies!!

janh

RE: [TMIC] hello?

[Tim Holder (Work)]

I guess heat is bad for fatigue and cold is bad for aches and pains.  I
am sooo looking forward to fall.  Here in Little Rock, we have had
100+ days almost all of August.  It's miserable.  And thanks for the
invite.  One of these days, I might just take you up on it.  I bet
Calgary is beautiful.

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 

From: Heather & Pieter [mailto:[EMAIL PROTECTED] 
Sent: Wednesday, August 29, 2007 11:40 AM
To: Tim Holder (Work); [EMAIL PROTECTED]; [EMAIL PROTECTED];
tmic-list@eskimo.com
Subject: Re: [TMIC] hello?

 

Tim,

 

You should be here in Calgary.  There was frost two nights ago.  Not a
killing frost but a frost all the same.  We covered the tomatoes just in
case.  We have quite short summers here in Calgary.  However, Indian
summer is just around the corner and that is good.  Usually after the
kids get back to school after the Labour Day weekend we have nice warm
days for a while again.  

 

So if you want to type come here.  However the cooler weather plays
havoc with the aches and pains associated with TM (and I'm sure with
arthritis and other illnesses).

 

Heather in Calgary 

- Original Message - 

    From: Tim Holder (Work) <mailto:[EMAIL PROTECTED]>  

To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ;
tmic-list@eskimo.com 

Sent: Tuesday, August 28, 2007 3:00 PM

Subject: RE: [TMIC] hello?

 

I know exactly what the problem is.  It's the heat.  I just
don't feel like typing.  But, I'm reading every single message and
praying over all of you gang.  So, when it's cooler...my fingers will be
on FIRE on the keyboard.  J

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 

From: [EMAIL PROTECTED]
[mailto:[EMAIL PROTECTED] 
Sent: Tuesday, August 28, 2007 9:07 AM
To: [EMAIL PROTECTED]; tmic-list@eskimo.com
Subject: Re: [TMIC] hello?

 

I am out here.  I guess for the moment we are all just enduring
the symptoms of TM and busy with getting on with life .  

 

But since I'm writing, let me just ask.  Is anyone else using
valium to help with spasms? 

 

This is what my primary physician prescribed at the onset of TM.


 

Since then, my neurologist had me on Dantrium which didn't seem
to prevent spasms, then the same with Baclofen but 5mg Valium (Diazepam)
taken would eventually stops the spasms so Ican go to sleep or at least
sit comfortably.Now it seems as if I need to take one more often
than I have been.  

 

My prescription  calls for  one tablet twice a day--should I try
to get my doctor to prescribe them more often, or see my neurologist to
and try Baclofen again or is there something else?  Your thoughts.

Gary in Michigan

- Original Message - 

From: [EMAIL PROTECTED] 

To: tmic-list@eskimo.com 

Sent: Tuesday, August 28, 2007 9:27 AM

Subject: [TMIC] hello?

 

Anyone out there?   Havent seen any email in a few days.

 





Get a sneak peek of the all-new AOL.com
<http://discover.aol.com/memed/aolcom30tour/?ncid=AOLAOF0002000982>
.



No virus found in this incoming message.
Checked by AVG Free Edition. 
Version: 7.5.484 / Virus Database: 269.12.10/977 - Release Date:
8/28/2007 4:29 PM

RE: [TMIC] hello?

[Tim Holder (Work)]

I know exactly what the problem is.  It's the heat.  I just don't feel
like typing.  But, I'm reading every single message and praying over all
of you gang.  So, when it's cooler...my fingers will be on FIRE on the
keyboard.  J

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 

From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Tuesday, August 28, 2007 9:07 AM
To: [EMAIL PROTECTED]; tmic-list@eskimo.com
Subject: Re: [TMIC] hello?

 

I am out here.  I guess for the moment we are all just enduring the
symptoms of TM and busy with getting on with life .  

 

But since I'm writing, let me just ask.  Is anyone else using valium to
help with spasms? 

 

This is what my primary physician prescribed at the onset of TM.  

 

Since then, my neurologist had me on Dantrium which didn't seem to
prevent spasms, then the same with Baclofen but 5mg Valium (Diazepam)
taken would eventually stops the spasms so Ican go to sleep or at least
sit comfortably.Now it seems as if I need to take one more often
than I have been.  

 

My prescription  calls for  one tablet twice a day--should I try to get
my doctor to prescribe them more often, or see my neurologist to and try
Baclofen again or is there something else?  Your thoughts.

Gary in Michigan

- Original Message - 

From: [EMAIL PROTECTED] 

To: tmic-list@eskimo.com 

Sent: Tuesday, August 28, 2007 9:27 AM

Subject: [TMIC] hello?

 

Anyone out there?   Havent seen any email in a few days.









Get a sneak peek of the all-new AOL.com

.

RE: [TMIC] OT/Daughter hurt in serious accident.

[Tim Holder (Work)]

We are praying.  Let us know how she is.

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 

From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Wednesday, August 22, 2007 8:35 PM
To: [EMAIL PROTECTED]; tmic-list@eskimo.com
Subject: Re: [TMIC] OT/Daughter hurt in serious accident.

 

Grace, I am so sorry to hear this. I will be praying for all of you. Let
us know how things are going when you can.

 

Barbara H.

http://barbarah.wordpress.com/  

 

In a message dated 8/22/2007 4:10:11 PM Eastern Daylight Time,
[EMAIL PROTECTED] writes:

My sixteen year old daughter has been in a serious accident.
She has only had her license for less than a month, and her new car for
less than two weeks.  She's been taken to a hospital in WVA.  Her
passenger has been life flighted.  Ex was called out of work and is on
his way to the hospital and I will be going down shortly.  Say a prayer
for them both that there are no serious injuries. 

 

Grace

 







Get a sneak peek of the all-new AOL.com

.

RE: [TMIC] Dear GroupOT OT

[Tim Holder (Work)]

I agree with you Jude.  I'm thankful for all points of view about faith
and trust in a higher power.  I believe we're all in this together.  I
don't for a second believe other points of view are invalid.  I know
what works for me and hope others feel comfortable enough to share
theirs.  God is good.  And He looks for everyone who diligently seek
Him.  

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 



From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Sunday, July 15, 2007 11:39 AM
To: [EMAIL PROTECTED]; Tim Holder (Work); tmic-list@eskimo.com
Subject: Re: [TMIC] Dear GroupOT OT

 

I make a lot of jokes simply to take some of the weight of TM from our
minds for a while, but it is people like Tim  who provide what I feel
are True Words of Wisdom that make us think and gives us actual relief
from Transverse Myelitis.

 

I sincerely want to thank Tim for his diligence in providing what I
consider to be the Truth; but I also would like to say thank you to
those of you out there in internetland, who belong to the "List", who
are of other than the Christian faith.  I know and exchange email with
people on the List, who like me, have TM...and are of other beliefs.  I
think that they have shown patience and open-mindedness in not "saying"
anything detrimental to what I consider a lovely way to start my day.

 

Since Tim has been leaving these messages, I have received so much
relief and understanding iregarding my battle with TM, that I don't know
now what I would do without his emails.  

 

I don't know if I have said this "correctly"  or if I have managed to
get my message  out in the best possible manner, but I  just want to
thank those of you who do not believe as I do, and have shown great
tolerance in the matter.

 

Don't stop Tim...I love our Lord, my Father, and all of His True Words
and maybe, my hope is that your emails will bring about change in the
way of thinking of a few...even one person on the List...and that will
make it,  your emails, all worthwhile.

 

Please accept my sincerity in this email topic and I would appreciate it
if you all could just let it go and not make a big deal out of what is
probably another case of my continual battle with "foot in mouth"
disease.  I doubt if I will ever learn.

 

I love you all...

Jude

 

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

2 Corinthians 4:17
NLT







Get a sneak peak of the all-new AOL.com
<http://discover.aol.com/memed/aolcom30tour/?ncid=AOLAOF0002000982>
.

RE: [TMIC] Dear Group

[Tim Holder (Work)]

Hey Jude,

 

I read this great book a few months ago called "90 Minutes In Heaven."
I highly recommend it.  It gave pain a new face and a new journey.  It's
by Don Piper.  A very good read.  

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 



From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Thursday, July 12, 2007 8:22 AM
To: [EMAIL PROTECTED]; tmic-list@eskimo.com
Subject: Re: [TMIC] Dear Group

 

You contribute here, both information and encouragement. :-)

 

Barbara H.

http://barbarah.wordpress.com/  

 

 

In a message dated 7/12/2007 2:50:50 AM Eastern Daylight Time,
[EMAIL PROTECTED] writes:

I think it has enriched my desolate life by knowing that there
are writers, doctors, nurses, dancers, teachers, hairstylists and
lawyers among us.  Personally, I am going through a major depression
that has to do with how I define myself now that I do nothing all day,
every day.  It's like I'm not a person any longer.  I don't contribute
anything to society, I have no goals to spur me on to become a better
person; to make me an interesting person, not one stuck on one topic
that occupies my every thought.

 

Does anyone else out there feel that way about themselves?  Is
it a phase?  A part of the "loss" psychology of having to find for
oneself a  place to fit in to this wonderful, wacky world...?

 

Someone please tell me...

 

I love you all and would not, in all honestly, make it through
one day without each and every one of you.

 

Peace and Prayers,

Jude/Judy/Judith/ Judith Gail, when my mother wanted to get my
attention! 

 

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

2 Corinthians 4:17
NLT

 







Get a sneak peak of the all-new AOL.com

.

RE: [TMIC] Chat

[Tim Holder (Work)]

Personally, I couldn't disagree more.  I love to read stories, jokes,
anticdotes from every one of you.  It lets me know that not only do I
have this disease, but I'm not alone.  And there are other human beings
out there who live full, active, fulfilled and fun lives.  It gives me
hope and joy...not just information.

 

I do understand that time is limited.  So, I will offer an alternative
suggestion.  If you're writing with a personal story, or joke, trust
me...I will read them and laugh and respond.  Just put "joke" in the
subject line.  That way, people with less time can just delete it and go
on with their schedule.  

 

Keep chatting...I need it,

Tim

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 



From: Robert Pall [mailto:[EMAIL PROTECTED] 
Sent: Thursday, July 12, 2007 1:27 PM
To: tmic-list@eskimo.com
Subject: [TMIC] Chat

 

I rarely if ever write anything negative regarding the group. I
realize that all of our conditions are different and that many of us do
not work and have more computer time than others. As for myself I do
work fulltime and quite often I have to read dozens of e mails to the
"whole" group that should be addressed only to an individual. 

This list is not supposed to be a chat room. The letters
addressed to the entire group should relate to issues that may effect
many of us. I personally do not want to read jokes. Many of us have
bonded with other members and that is greatbut it would be greater
if non TM matters were addressed to that single person.

I think we should always consider the new member to the list and
restrict our e mails to the group strictly to TM related subjects.

If you disagree please tell me why! 

Rob in New Jersey 

RE: [TMIC] Dear Group

[Tim Holder (Work)]

Naomi,

 

God never makes a mistake.  I don't believe he sent this to us.  But, I
am convinced that it filtered through His fingers.  He allowed it to
happen for a specific reason.  If there were not a point to this disease
in your (my) life for His glory, it wouldn't have happened.  Personally,
I have given my testimony at church a couple of times since this
happened to me.  It's amazing to see the response.  I don't necessarily
have answers.  I don't.  But, just telling a story and someone hearing
it can make the biggest impact in their life and we won't even know
until eternity.  Just so you know, your letter meant something to me.
It ministered.  Thanks.

 

Tim

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 



From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Thursday, July 12, 2007 12:50 PM
To: [EMAIL PROTECTED]; tmic-list@eskimo.com
Subject: Re: [TMIC] Dear Group

 

Jude,

 

It's funny, I was just thinking the exact same thing before I logged
into my computer.  I was thinking about where I stand in this life time.
What do I have to offer to being a meaningful person.  Being a C4 Quad,
I have no movement on the right side and limited movement on the left
side.  This leaves me unable to perform the most meager task.  I was
wondering, what is there left for me?  I can't do anything, I can't go
anywhere alone, I don't produce anything.  Does that mean that I have no
place in this world?

 

I had been working a full-time job, since the age of 15.  I am now 50
years old.  In those years, I did a lot of different type of work.  All
of it producing something.  Now all I produce is work for someone else
to do... caring for me.  Is this my destiny?

 

Usually I'm pretty upbeat and take things in stride.  I rely on my faith
in God, to get me through most days, but today I just feel a little
depressed.  Maybe I need to up my Cymbalta dosage.

 

I come to this message board, because I know that someone here will
understand and sympathize with me.  I agree with Jude, when she stays
that our friends and family can't really relate to what we actually
feel.  I just needed a shoulder to cry on for today.  Thanks for being
there for me. 

 

Naomi
C-4 quad, incomplete
since July 2, 2005







Get a sneak peak of the all-new AOL.com

.

RE: [TMIC] OT Announcement

[Tim Holder (Work)]

Tom Lehrer is HILARIOUS!!!  His songs were so satirical and sardonic I
was usually embarrassed and a bit guilty for laughing.  But, couldn't
help myself.  I worked at a dinner theater in Nashville for several
years and we did a show called Tom Foolery.  It was an evening of his
songs.  And I've had a soft spot for his work ever since.  I'll see if I
can find some of his lyrics and post one here.  They are NOT for the
faint of heart.  They aren't profane, as a rule.  Just biting.

Tim Holder
Worship Leader for 
Celebrate Recovery
[EMAIL PROTECTED]
(501)224-7171 ext. 1454
Fellowship Bible Church
1901 Napa Valley Drive
Little Rock, AR 72212-3913
 
 
 
 
-Original Message-
From: Grace M. [mailto:[EMAIL PROTECTED] 
Sent: Wednesday, July 11, 2007 9:01 AM
To: [EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Subject: Re: [TMIC] OT Announcement

Ah Frank, you smooth tongued devilthank you so much for reminding
me of the illustrious Mister Gore and his great contribution to
mankind;-)

On 7/11/07, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote:
> >Whatever it just don't make sence putting a number in a name.
>
> Rick,
>
> Long ago I listened to a record by Tom Lair (SP?).  He sang a song
made up of all the elements known at that time- long ago, in the 1950's-
he also talked about a friend, Hen3ry, the 3 was silent. HaHaHa, I would
laugh.
>
> When I was old enough, I started putting numbers into my name.
HaHaHa, people would laugh.
>
> Years later, Mr. Gore and his buddies invented the internet, and
passwords were born.  Words with imbedded numbers were the ultimate
passwords.
>
> So now you know how the "3" was born!
>
> pH
>
>

RE: [TMIC] Weekend

[Tim Holder (Work)]

Well, now Heather, just so you know...I've heard of the stampede even
way down here in Arkansas.  Someday I'll have the money to get up there
and see it.

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 



From: Heather & Pieter [mailto:[EMAIL PROTECTED] 
Sent: Friday, July 06, 2007 3:23 PM
To: natalie mizenko; Transverse Myellitis
Subject: Re: [TMIC] Weekend

 

Hi Natalie,

I hope you have a much easier weekend this time round.  It is beautiful
sunny warm and really summery here in Calgary today.  Today is also the
start of the so we are told World Famous Calgary Stampede which lasts 10
days.  I am hoping that this year we will be able to go to the grounds
and manage to get one of the handicapped parking spots.  Haven't been
down since I was stricken in Sept. 2003.  

 

Heather in Calgary 

- Original Message - 

From: natalie mizenko   

To: Transverse Myellitis   

Sent: Friday, July 06, 2007 1:16 PM

Subject: [TMIC] Weekend

 

Hello to Everyone:

 

Hope all of you have a wonderful weekend.  Mine last week was lost as I
had severe pain I dealt w/ day and night.  I pray that  yours is good
for you!  Natalie M.

 





Be a better Globetrotter. Get better travel answers
 from
someone who knows.
Yahoo! Answers - Check it out. 





No virus found in this incoming message.
Checked by AVG Free Edition. 
Version: 7.5.476 / Virus Database: 269.10.1/888 - Release Date:
7/6/2007 6:36 AM

RE: [TMIC] Doctors!

[Tim Holder (Work)]

Mark,

 

I was diagnosed in January.  I've been cathing since last November.  My
neurologist told me to not expect change either.  I know it's annoying
and frustrating and awkward at times.  But, I'm kind of getting used to
it now.  And no one around me acts as though it bothers them.  I just
hate to always make sure I have my intermittent cath kit in the car with
me.

 

Tim

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 



From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Thursday, July 05, 2007 8:42 AM
To: Tmic-list@eskimo.com
Subject: [TMIC] Doctors!

 

I went to my Internist the other day for a non TM related issue.  Since
I had him cornered I asked him some questions about my TM. He has been
seeing me for years and has been involved since my TM.

I asked him about my urine retention problem. ( I have been cathing 4
times a day since my TM, Oct. 2006). He told me that usually someone who
has been cathing for over 6 months usually does not get back to normal.

Is this true?  All that I have read and my visit to Johns Hopkins says
two years is the target. Am I destined to cath now for the rest of my
life? Should he have said that without knowing for sure?

I try to think positively but when you doctor of many years tells you
that your bladder will probably not come back it is difficult to keep a
positive attitude.

Thanks for letting me vent.

Mark
Marlton, NJ


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

RE: [TMIC] hot feet/shoes/croc style and I'm back

[Tim Holder (Work)]

Doesn't that just figure.  Hehehe!!!

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 



From: Sandra Brassil [mailto:[EMAIL PROTECTED] 
Sent: Friday, June 29, 2007 2:32 PM
To: [EMAIL PROTECTED]; [EMAIL PROTECTED]; tmic-list@eskimo.com
Subject: RE: [TMIC] hot feet/shoes/croc style and I'm back

 

My favorite shoes are Easy Spirit brand.  All my shoes are easy spirit.
They are extremely comfortable!   I have actually asked to be a
spokesmodel for them.  My feet are asleep and hurt all the time.  Any
little extra strap or something kills me.  I just love the Easy Spirit
shoes!!  Women only.  No Mens, sorry.

 

Sandy Brassil

Accounting Assistant

Alveolus, Inc.

"Inspiring the Breath of Life"

 

9013-A Perimeter Woods Drive

Charlotte, NC  28216

Phone:  (704) 926-4854

Fax:  (704) 926-4895

[EMAIL PROTECTED]  

http://www.alveolus.com  

 

This email may contain confidential or privileged information.  If you
are not the intended recipient, please advise me (by return email) that
you received this email by mistake.  Afterward, I respectfully request
that you erase this email without reading it or sending it to anyone
else.  Thank you. 

 



From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Friday, June 29, 2007 9:13 AM
To: [EMAIL PROTECTED]; tmic-list@eskimo.com
Subject: Re: [TMIC] hot feet/shoes/croc style and I'm back

 

So sorry about the wheelchair fiasco! But glad you had a good time. I've
been a little afraid to try crocs because my balance is such a problem
-- any shoes besides my very flat flexible ones throw me off. But I
might see if I can try some out, I've heard such great things about
them.

 

Glad you're back safe and sound!

 

Barbara H.

http://barbarah.wordpress.com/  

 

In a message dated 6/29/2007 1:49:16 AM Eastern Daylight Time,
[EMAIL PROTECTED] writes:

Hello all,

 

I'm back from a great time with the grandchildren in Orlando.
It was touch and go for the first day or two.  We were all tired from
the cross country flight, arriving past midnight and the airlines lost
my wheelchair, yet again.  We had a very tight connection, only 40
minutes, so I didn't have them gate check/retrieve it for me in Denver
where we connected, but asked them to check it all the way through to
Orlando.  When we arrived in Orlando, the chair was left in Denver.
That took almost 2 hours to figure out, so by the time we got into our
rental car, with an airline wheelchair, it was 3am.  Then, after
checking into our resort, almost 4am before we could crawl into bed.  At
least our body clocks were on west coast time, so not too bad.  

 

The next day I was eager to hit Disney's Wild Animal Park, so we
arrived around noon to a crowd of people and a lot of heat and humidity.
My husband was cranky, as well as the youngest grandson.  Not the best
way to start a vacation, but it got better from there.  We really
enjoyed spending the time with them, and think they did too.  We are all
very lucky people to have each other and to be able to spend special
time together.  We're looking forward to some more time this summer, as
we have to work around the school calendar.  I've grown to hate that
darned calendar.   

 

I bought some "croc type" shoes while away, and just love them.
They are so comfy and lightweight.  Like walking on air, no
weight at all to them.  I also wore them in the swim pool since my feet
are very sensitive to the pressure on the bottom of the pool.  The shoes
made the difference, and I even managed to do some "faux swimming" in
them.  I never really learned how to swim, and now don't have the leg
strength to do so properly.  I have a lousy kick, but even with the
shoes on, it didn't feel any different.  I highly recommend them.  I
bought a generic brand, Sahara, for $12 in Orlando.  I was chicken and
got the navy ones, but I think I'll invest in a colorful one next.  My
left foot is the hottest, and it does feel a bit hot and sticky on the
bottom only.  It's definately tolerable though, and the little nubby
things on the sole don't bother at all.  I cannot wear the strap though,
as the fastener irritates my ankle.

 

It looks like the list has been pretty busy, so it'll take me a
while till I can get through our old emails.

 

Hugs to all, 

 

Barbara Alma

 

 



See what's free at AOL.com
 . 

RE: [TMIC] from Gary

[Tim Holder (Work)]

No, I think you're right.  My understanding is that TM originates from a
virus that moves into the spinal column and becomes TM.  MS is it's own
disease.  And almost always, TM is a one time event.  But, occasionally,
it hits more than once.  Like, for me, they tested me for every kind of
virus you can think of.  On paper, I'm the healthiest person you know.
But, last November, I got diarrhea really bad.  Then, after about 10
days, everything just stopped.  Literally.  They call it a rogue virus.
They never found anything.  But, it came, did it's damage and left.   

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 



From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Wednesday, June 27, 2007 4:01 AM
To: [EMAIL PROTECTED]
Cc: [EMAIL PROTECTED]; tmic-list@eskimo.com
Subject: Re: [TMIC] from Gary

 

Again, just my opinion, but any of us could get 'hit' again!  But if
there's no signs of a repeat attack, it seems a little over-cautious to
worry about it.  (How many TMers have ended up with MS?  I know there's
some, but my impression is, there's a whole bunch of us that only have
TM.)  Again, I may be wrong.

Sally

RE: [TMIC] ozone therapy

[Tim Holder (Work)]

How do they get it out of the atmosphere?  :-)

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 



From: Larry Throne [mailto:[EMAIL PROTECTED] 
Sent: Wednesday, June 27, 2007 8:03 AM
To: [EMAIL PROTECTED]; tmic-list@eskimo.com
Subject: RE: [TMIC] ozone therapy

 

Sounds like Voodoo too mee!

Larrry inn Oklahomaa where I here distant drumming and chickens. H?


P.S. I am feeling a little better, going into the office this am to see
how I do.





Larry Throne, MSW





From: T Kanon <[EMAIL PROTECTED]>
To: tmic-list@eskimo.com
Subject: [TMIC] ozone therapy
Date: Wed, 27 Jun 2007 05:39:34 -0700 (PDT)

Dear TM Friends,

A friend of mine is interested in Ozone Therapy to help her ease
the pain from shingles.  Have any of you ever heard of this?  She
thought I might benefit from this also.  It is an injection of ozone. It
sounds pretty scary to me.

Thanks everyone,

Tobe

Brooklyn NY





Building a website is a piece of cake. 
Yahoo! Small Business gives you all the tools to get online.
  






Hotmail to go? Get your Hotmail, news, sports and much more!
  

RE: [TMIC] from Gary

[Tim Holder (Work)]

I was in the bed for almost a week after my spinal tap.  No one told me
it is VERY helpful to drink caffeine.  So, I got a 2 litre Mountain Dew
and drank a glass full every couple of hours.  I was feeling good enough
to sit up within about 4 hours.  Drink LOTS of caffeine after the spinal
tap and it will help.  NO KIDDING!!!

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 



From: Larry Throne [mailto:[EMAIL PROTECTED] 
Sent: Monday, June 25, 2007 9:40 PM
To: [EMAIL PROTECTED]; tmic-list@eskimo.com
Subject: RE: [TMIC] from Gary

 

What ever you do, stay flat on your back as long as you can.  After my
first one no body told me to stay down and I reached to the end of the
bed to get something and Bam! I thought someone shoved a hot ice pick in
my brain.  That was over thirty years ago and I still remember that
pain!  Other than that, I had several others over the next few weeks and
even the next few years.  I think I have had 8 or 9 total and none of
the others were painful at all.  Mostly discomfort.  

I don't know why he insist on one now, I would think a MRI would make a
better diagnostic tool?  

Good luck though.  Larry in Oklahoma where I am feeling better.  It's
amazing what a couple of rounds of cipro will do for you





Larry Throne, MSW





From: Wendy <[EMAIL PROTECTED]>
To: "'TMIC List'" 
Subject: RE: [TMIC] from Gary
Date: Mon, 25 Jun 2007 22:23:33 +0200

Hi Gary:

 

The spinal tap wasn't so bad.  Just be sure to drink plenty of
water afterwards to minimize a headache.  I did have a bad headache for
two or three days, but it was worth getting some answers.  

 

Just my two cents

 

Wendy in NJ

 





From: [EMAIL PROTECTED]
[mailto:[EMAIL PROTECTED] 
Sent: Tuesday, June 26, 2007 4:15 AM
To: TMIC List
Subject: [TMIC] from Gary

 

Thanks to all who gave an input about fatigue.  I went to my
neurologist today but did not accept a prescription at this time.  I
think I'll try some of the non-prescription suggestions including trying
to rest more. I do work full-time and clean our church for three hours
twice a week plus keep up a house.  

 

There is another issue about which I would like some thoughts
from others:

 

While in the hospital three years ago the diagnosis was TM.  I
was never referred to the neuro who made the diagnosis as far as
follow-up.  I just went to my primary physcian who just said there is no
treatment.  After two years I asked if he would refer a neuro and he
did.

 

Well, the neuro was flabbergasted that I had no follow-ups so
ordered spinal and brain MRIs and the spinal was the only on the showed
the "old" lesion--no change in two years.

 

I had another brain MRI last week and today was told no lesions.

 

However, the neuro still won't accept firmly a TM diagnosis and
wants me to have a spinal tap because if it is positive I can take
monthly IV's to help prevent any further "damage".

He said he hopes I have just had an isolated incident brought on
by a virus but, of course, won't say that is the case so wants the
spinal tap but won't "twist my arm" but let him know and he will order
it.

 

So, has anyone had anything similar happen?  What would you do?
A spinal tap doesn't sound fun.  Could it create further problems?

 

Sorry to be so wordy.

 

Thanks,

Gary in Michigan

 






Like puzzles? Play free games & earn great prizes. Play Clink now.
  

RE: [TMIC] from Gary

[Tim Holder (Work)]

Here's what I can't figure out.  I have symptoms of TM and MS.  The
doctor thinks it's TM only because they don't see any lesions on my
brain or spine.  BUT...when they did the spinal tap, the only thing they
found was that the myelin protein level was raised.  Which should show
that there is a lesion somewhere.  And that is a definite sign of MS.
But, they don't see any on any MRI's.  And believe me, I've had plenty.
And I go back for more in August.  But, because he's not seeing lesions,
he isn't taking MS off the table, just in case they see some on the new
MRI's.  And many of you have TM and DO have lesions.  So, how do they
tell the difference between TM and MS at this early stage.  I have had
symptoms since last November.  And I have a good friend who got symptoms
at the same time as me.  She was also diagnosed with TM.  But, they just
did a new set of MRI's on her and the lesions are worse so she's been
rediagnosed with MS.  And I have another friend who was diagnosed with
MS last August.  That's three of us that work at the same place.  Odd,
huh?

Tim Holder
Worship Leader for 
Celebrate Recovery
[EMAIL PROTECTED]
(501)224-7171 ext. 1454
Fellowship Bible Church
1901 Napa Valley Drive
Little Rock, AR 72212-3913
 
 
 
 
-Original Message-
From: Trudy [mailto:[EMAIL PROTECTED] 
Sent: Tuesday, June 26, 2007 2:43 PM
To: tmic-list@eskimo.com
Subject: RE: [TMIC] from Gary

I was diagnosed with TM five yrs. ago. When I went over to Medicare I
had to
get all new doctors.. My new neuro decided it was MS. So he did a spinal
tap
(thankfully, he's very good at it) but I did have to lay there for two
hours
afterwards so bring some tapes!! The spinal tap was no more conclusive
now
than it was five yrs ago. I have lesions on the brain which is why the
MS
has now been diagnosed. I take Copaxone my "insurance card" against
a
serious MS attack. But I think it's TM... I do have to see my neuro
every
3-4 months for checkup, prescriptions, etc...
Good luck!
Trudy

RE: [TMIC] OT: Doctor won't refill medications.

[Tim Holder (Work)]

Okay, that's good.  I felt so abandoned and alone...LOL!

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 



From: Heather & Pieter [mailto:[EMAIL PROTECTED] 
Sent: Friday, June 22, 2007 3:00 PM
To: Tim Holder (Work); Tmic-list@eskimo.com
Subject: Re: [TMIC] OT: Doctor won't refill medications.

 

Hi Tim,

 

I had a couple of things show up but they could have been there last
night too.  I think everyone is busy enjoying some summer weather.  It
is Friday and lots of things happen this time of year.  Also year end
for most schools now too.  I'm thinking people are just a bit busy
today.

 

Heather in Calgary (where it is finally sunny for the last couple of
days after a week of deluge type rain).

- Original Message ----- 

    From: Tim Holder (Work) <mailto:[EMAIL PROTECTED]>  

To: Tmic-list@eskimo.com 

Sent: Friday, June 22, 2007 12:54 PM

Subject: RE: [TMIC] OT: Doctor won't refill medications.

 

HEY...I didn't geat any messages from anyone today.  Is everyone
silent?  Or is something wrong with the list?

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 





From: Kevin Wolfthal [mailto:[EMAIL PROTECTED] 
Sent: Thursday, June 21, 2007 11:04 PM
To: Tmic-list@eskimo.com
Subject: Re: [TMIC] OT: Doctor won't refill medications.

 




Pam.

I don't think it's a problem on my computer.

Kevin









[EMAIL PROTECTED] wrote: 

KEVIN I AM GETTING YOUR MESSAGES 3 OR 4 TIMES. I DO NOT KNOW IT
MUST BE YOUR COMPUTER. ANOTHER PROBLEM YOU DO NOT NEED.

PAM

 





See what's free at AOL.com
<http://www.aol.com?ncid=AOLAOF0002000503> . 

 





No virus found in this incoming message.
Checked by AVG Free Edition. 
Version: 7.5.472 / Virus Database: 269.9.6/862 - Release Date:
6/22/2007 3:04 PM

RE: [TMIC] OT: Doctor won't refill medications.

[Tim Holder (Work)]

HEY...I didn't geat any messages from anyone today.  Is everyone silent?
Or is something wrong with the list?

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 



From: Kevin Wolfthal [mailto:[EMAIL PROTECTED] 
Sent: Thursday, June 21, 2007 11:04 PM
To: Tmic-list@eskimo.com
Subject: Re: [TMIC] OT: Doctor won't refill medications.

 




Pam.

I don't think it's a problem on my computer.

Kevin









[EMAIL PROTECTED] wrote: 

KEVIN I AM GETTING YOUR MESSAGES 3 OR 4 TIMES. I DO NOT KNOW IT MUST BE
YOUR COMPUTER. ANOTHER PROBLEM YOU DO NOT NEED.

PAM







See what's free at AOL.com
 . 

 

RE: [TMIC] Same email repeat

[Tim Holder (Work)]

I think what happens is when we reply to all, the original senders name
is in with the tmic-list.  I always go back and delete everyone's name
from the "to" line except tmic-list.

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 



From: Regina Rummel [mailto:[EMAIL PROTECTED] 
Sent: Thursday, June 14, 2007 1:10 PM
To: tmic-list@eskimo.com
Subject: [TMIC] Same email repeat

 

I wonder why some of our emails are sent (or just received) at leat
twice.  Comments

R

RE: [TMIC] Allen Rucker on Montel Williams Tuesday June 12

[Tim Holder (Work)]

There is another interesting thing about my diagnosis.  Extensive MRI's,
CAT scans, exrays, spinal tap, etc. were done.  There were no lesions to
be found in my brain or spine.  But, in the spinal tap, there was a
raised myelin protein level.  So, they can't take MS off the table for
me yet.

Tim Holder
Worship Leader for 
Celebrate Recovery
[EMAIL PROTECTED]
(501)224-7171 ext. 1454
Fellowship Bible Church
1901 Napa Valley Drive
Little Rock, AR 72212-3913
 
 
 
 
-Original Message-
From: Akua [mailto:[EMAIL PROTECTED] 
Sent: Tuesday, June 12, 2007 5:45 PM
To: tmic-list@eskimo.com
Subject: Re: [TMIC] Allen Rucker on Montel Williams Tuesday June 12

Jim also led me to the brochure, but the original question wasn't
mine.


>Hi Akua,  You wrote:   As to Spreading the Word: mailings? Brochures we
>could print out and  send to hospitals?   Information flyers in pdf
form
>that people could print out.
>
>The TMA website already provides a brochure that is already written and
is
>in the pdf format.  Here is the link:
>http://myelitis.org/TMA_brochure_2005.pdf
>
>Join SCI support groups and spread the word of TM. It is treated much
like a
>SCI once it has moved to the chronic phase.  Often times you will come
in
>contact with folks that have other contacts and you can talk with them.
>Look for opportunities at local Universities that have research centers
and
>talk with them.  Attend fundraisers, like the Christopher & Dana Reeve
ones
>that are held in various cities (search their website) and talk to the
>people there.  There are many ways to get the word out but we have to
be
>active, often as individuals, to make it happen.  Offer to attend
meetings
>and educate others on TM.  There are tons of ways to make people aware
of
>TM.  What most people want is to really educate the masses and to find
a way
>to do it quickly.  Won't happen, we have to do what we can individually
or
>working with others who have TM.
>
>Cindy McLeroy
>
>
>  >   As to Spreading the Word: mailings? Brochures we could print out
and
>>  send to hospitals?
>>  Information flyers in pdf form that people could print out? The
>>  Reeves Foundation was the best source of information with that
>>  wonderful handbook on SCI
>>
>>>


-- 

RE: [TMIC] hip pain

[Tim Holder (Work)]

Well, I just figured it was from the nerve damage.  It never happened
until all the other TM symptoms started.  I go to my neuron next month,
so I'll ask him then.  I think I mentioned it to him once and he didn't
really respond.  So, I didn't give it much thought.  Good advice though.
I'll sure get it checked out.

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 



From: Diane [mailto:[EMAIL PROTECTED] 
Sent: Tuesday, June 12, 2007 4:45 PM
To: Tim Holder (Work); tmic-list@eskimo.com
Subject: Re: [TMIC] hip pain

 

Tim, it sounds like a trip to your doctor's is due.  You could have
bursitis, arthritis or other inflammatory problem.

I wrote a short while ago that I get inflammation in my joints and that
5 drs can't find the cause.  Maybe you're weird like me, lol.  I just
got over a bout in my right hip.  It was so severe that I had to spend a
lot of time sitting or lying down.  Now, I can't lie on my hips because
of very deep pressure sores.  I'm sleeping in a recliner where the pain
from the pressure sores on my butt is not quite as bad.  Ho hum.  I can
hardly wait to see what's next.

Diane in 90oF. Ottawa, Canada

        - Original Message - 

From: Tim Holder (Work) <mailto:[EMAIL PROTECTED]>  

To: tmic-list@eskimo.com 

Sent: Tuesday, June 12, 2007 4:22 PM

Subject: RE: [TMIC] hip pain

 

I have a weird symptom.  At night, while sleeping, I wake up
with the hip I'm laying on hurting.  So, I turn over and fall back
asleep until THAT hip wakes me up from pain.  If it hasn't been enough
time for the first side to stop hurting, I just have to lay on my back
until I fall asleep.  It's really strange.  My hips don't hurt unless
I'm sleeping on them.

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 





From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Tuesday, June 12, 2007 2:29 PM
To: tmic-list@eskimo.com
Subject: [TMIC] hip pain

 

For about 3 weeks I've had severe pain in my left hip (what used
to be my good leg).  I've had pain for a long time, but I figured it was
from putting my weight on my 'good leg' since the leg that was
originally paralyzed still had a lot of numbness and 'malfunction'.  But
for the last 3 weeks its so bad that I sometimes can't sleep and can't
stand to sit for more than a few seconds.  Staying on my feet is okay,
but tiring.  Laying on my stomach with ice on my hip is the best, but
not like I can't still feel the pain.  Laying on my back sometimes still
hurts that hip, but sometimes its okay.

Some professionals are saying Sciatica, but the recent MRI
showed no nerve was pinched in my spine.  Piriformis Syndrome is a
condition where the piriformis muscle is maybe inflamed and pressing on
the sciatic nerve so that it feels like sciatica, and that could be the
case.  However, the physiatrist who's supposed to diagnose this is busy
until almost mid-July.  In the meantime, I can't even go to my PT (and I
was really making progress!) b/c sitting in the Handi Van or even the
car is too extremely painful.

Has anyone had any experiences that relate to this?  I'm open to
suggestions here.

Thanks,
Sally
Ambulatory T6-T8, 5/2005

RE: [TMIC] hip pain

[Tim Holder (Work)]

I have a weird symptom.  At night, while sleeping, I wake up with the
hip I'm laying on hurting.  So, I turn over and fall back asleep until
THAT hip wakes me up from pain.  If it hasn't been enough time for the
first side to stop hurting, I just have to lay on my back until I fall
asleep.  It's really strange.  My hips don't hurt unless I'm sleeping on
them.

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 



From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Tuesday, June 12, 2007 2:29 PM
To: tmic-list@eskimo.com
Subject: [TMIC] hip pain

 

For about 3 weeks I've had severe pain in my left hip (what used to be
my good leg).  I've had pain for a long time, but I figured it was from
putting my weight on my 'good leg' since the leg that was originally
paralyzed still had a lot of numbness and 'malfunction'.  But for the
last 3 weeks its so bad that I sometimes can't sleep and can't stand to
sit for more than a few seconds.  Staying on my feet is okay, but
tiring.  Laying on my stomach with ice on my hip is the best, but not
like I can't still feel the pain.  Laying on my back sometimes still
hurts that hip, but sometimes its okay.

Some professionals are saying Sciatica, but the recent MRI showed no
nerve was pinched in my spine.  Piriformis Syndrome is a condition where
the piriformis muscle is maybe inflamed and pressing on the sciatic
nerve so that it feels like sciatica, and that could be the case.
However, the physiatrist who's supposed to diagnose this is busy until
almost mid-July.  In the meantime, I can't even go to my PT (and I was
really making progress!) b/c sitting in the Handi Van or even the car is
too extremely painful.

Has anyone had any experiences that relate to this?  I'm open to
suggestions here.

Thanks,
Sally
Ambulatory T6-T8, 5/2005

RE: [TMIC] Pain or no Pain

[Tim Holder (Work)]

After listening to everyone on this list, I feel like I have less
symptoms than most.  But, I still feel constant pain and discomfort.
So, I'm going to guess that some sort of pain is just part of everyone's
experience with TM.

Tim Holder
Worship Leader for 
Celebrate Recovery
[EMAIL PROTECTED]
(501)224-7171 ext. 1454
Fellowship Bible Church
1901 Napa Valley Drive
Little Rock, AR 72212-3913
 
 
 
 

-Original Message-
From: Regina Rummel [mailto:[EMAIL PROTECTED] 
Sent: Monday, June 11, 2007 9:34 AM
To: tmic-list@eskimo.com
Subject: [TMIC] Pain or no Pain

Most of us suffer awful pain.  But is it possible that some of us do not
have any pain?  I don't mean little aches here and there, I mean real,
excruciating pain.
Can you be diagnosed with TM, and have no pain?  Is that possible?
Regina 

RE: [TMIC] ot

[Tim Holder (Work)]

Could you all talk a little bit about the "2nd episodes?"  I haven't had
a second episode.  I'm wondering how far it was between the first one
and second one.  I understood from researching TM that 2nd episodes were
relatively rare.  But, it seems quite a few of you have had more than
one.  Maybe I should get my house really cleaned up...just in case.  You
are all so inspirational to me.  I know that my symptoms are nothing
compared to what many of you experience.  So, I'm not going to complain
about my minor aches and pains.  

 

Tim

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 



From: cakalley [mailto:[EMAIL PROTECTED] 
Sent: Monday, June 11, 2007 8:28 AM
To: [EMAIL PROTECTED]
Cc: tmic-list@eskimo.com; [EMAIL PROTECTED]
Subject: Re: [TMIC] ot

 

When I asked my neuro, he said that (I'm paravasing) it depends on how
deep the attack on the myeli, the shaft surrounding the spinal cord, and
the degree of scar.  My C4 - T2 was on my second episode and had already
been treated with steriods.  All of my leisions were difficult to see on
MRI and overlooked on the first couple.  Thats why I had 4 MRI's before
finding.  Maybe that's the difference?  Everyone is differant even with
other diseases - some people have worst attacks of some disesase, some
people react to different meds than others.  

 

God has made each and everyone of us similiar but DIFFERENT - we are
like snowflakes - unique and beautiful in our differances.

 

Candy K.



-Original Message- 
From: [EMAIL PROTECTED] 
Sent: Jun 10, 2007 10:30 PM 
To: [EMAIL PROTECTED], [EMAIL PROTECTED] 
Cc: tmic-list@eskimo.com 
Subject: Re: [TMIC] ot 




In a message dated 6/10/2007 4:32:37 PM Eastern Daylight Time,
[EMAIL PROTECTED] writes:

I have multiple levels.  One at C4 to T2 the other at
T10 to T12.  The T10 - T12 leison made me paralyzed from bra line down.
I went thru PT/OT and walked with a walker and was "hell on wheels" in a
wheel chair.  The C4 - T2 made me a quad.  With Plasma Exchange (PLEX)
and starting at square one with PT/OT after 6 months I walk with a
walker but have no strength for the wheelchair.  I can walk 25 - 30 feet
but need to stop and rest before going on.  I have an electric scooter
for those times I need to go out and about.  The 2nd episode really
zapped me of my strength, stamini and durance.  I work in burst of 10 -
15 min. before I need to rest which maybe from 20 min to hours or days
depending on what I have been doing.  Shopping for groceries is usually
a day and half R&R.

I just can't get my mind around the fact that there are
paraplegics who are truly paralyzed and those that can walk.  There are
quadraplegics who are also the same.  It seems as though TM ought to
stay the same all of the time...meaning I ought to be able to walk a bit
like some of you.  I don't know if it is better to be one of the
"walking wounded" or not.  I don't mean it to sound like I think any of
you have it easier than those of us in wheelchairs 24/7.  I just don't
understand the various ways the same disease can affect us.

 

Is there anyone out there who can explain it better to me?

 

Love you,

Jude

 

 

2 Corinthians 4:17
NLT









See what's free at AOL.com
 . 

RE: [TMIC] ot

[Tim Holder (Work)]

Oh my goodness.  I'm so glad to read this stuff about heat and cold.  I
was so afraid I was making stuff up in my head.  Thank you thank you
thank you.

 

tim

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 



From: Wendy [mailto:[EMAIL PROTECTED] 
Sent: Friday, June 08, 2007 8:53 AM
To: 'Diane'; 'Kevin Wolfthal'; [EMAIL PROTECTED];
Tmic-list@eskimo.com
Subject: RE: [TMIC] ot

 

Since I'm fairly new with the TM everyone's input has really been
helpful.  Sometimes I think I'm going crazy as symptoms come and go or
change,  then I read the comments and many of you are having the similar
experience.  

 

Heat seems to make my fatigue worse also and I've been getting these hot
flashes in my feet.   My feet get so hot I have to take my shoes off at
times.  

 

Wendy in NJ

 



From: Diane [mailto:[EMAIL PROTECTED] 
Sent: Friday, June 08, 2007 8:51 PM
To: Kevin Wolfthal; [EMAIL PROTECTED]; Tmic-list@eskimo.com
Subject: Re: [TMIC] ot

 

Heat also makes my fatigue worse and often leads to a flare.

I do not feel the cold unless I am unwell.

Diane in 90oF. today.

- Original Message - 

From: e   

To: [EMAIL PROTECTED] ; Tmic-list@eskimo.com 

Sent: Friday, June 08, 2007 11:43 AM

Subject: Re: [TMIC] ot

 


Extremes of heat OR cold affect me badly.

Heat makes my fatigue worse, and generally feel weak.

Cold causes my pain to be worse.

Kevin

RE: [TMIC] Renal problems

[Tim Holder (Work)]

Hey Natalie, I'm in Little Rock.  I have a wonderful urologist too.
It's Dr. Langford.  Who is yours?  I've seen Dr. Brizzolara as well.
He's great too.

 

Tim

 

Tim Holder

Worship Leader for 

Celebrate Recovery

[EMAIL PROTECTED]

(501)224-7171 ext. 1454

Fellowship Bible Church

1901 Napa Valley Drive

Little Rock, AR 72212-3913

 

 

 

 



From: natalie mizenko [mailto:[EMAIL PROTECTED] 
Sent: Monday, June 04, 2007 2:28 PM
To: Transverse Myellitis
Subject: Re: [TMIC] Renal problems

 

Jude,

I have been sick of wearing a Depend every since I came home.  They are
often soaked ever before I cath and I cath every 4 hours.  My husband
took me to the urologist in Little Rock (1 hour away), but before that
appt. I had an internist appt. in L.R.  It had been right at 4 hours and
I was wearing a Depend.  They call my name and we wheel into the exam
room and before the dr. even came in the room I was urinating on the
tile floor.  My husband grabbed paper towels and a large beaker to
measure your urine in to cath just to get the rest of what came out.  I
was so upset.  Thankfully I was at a dr. who understood.  He is an
excellent urologist and two people I know who are picky w/ drs. use him.
I told him I could cath and as soon as I get up to get into the chair I
am wet again.  He said that is because of the TM.  It hits both sides of
the spine and it will only get worse for you Natalie.  And he is not one
to push surgeries.  He said go home and you all give it some thought.  I
said, "I've thought enough - I want it done."  He has scheduled one more
office appt. w/ me to go over the surgery in every detail and then the
surgery will be scheduled.  I hate staying wet.  I hate getting out of
our leather seats in our car and there is urine sitting on top of it.  I
hate the constant odor & I hate my husband having to constantly wipe my
"a.." because it is covered w/ urine.  I sleep on 2 cotton pads at night
plus wearing a Depend and I cath during the night even.  I don't want to
go to a foley for several reasons, so this is my answer I believe.  Even
tho I don't want anymore surgeries or in the hospital, I want a better
quality of life than this.  (Sorry for the novel)  Natalie M.

 



[EMAIL PROTECTED] wrote: 

 

Natalie,

 

I am so proud of you for having the surgery.  What prompted you
to make the decision?  I have thought about having it done for the
longest time, but don't know anyone who has had it done.

 

I will be anxious to hear how you like it and how much work it
is.  Plus I'd like to know which company you are going with and did you
get information online or just from the doctor.

 

I am sorry that you have been in such pain.  I wondered why I
hadn't heard from you in such a long time.  I miss you terribly.

 

I rely on Fentanyl patches every three days, and since other
people don't understand my pain, I don't care what they think.  I do
what I have to do to get through life each day.

 

You take care of you...

Jude

 

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

2 Corinthians 4:17
NLT









See what's free at AOL.com
 . 

 

  



Park yourself in front of a world of choices in alternative vehicles.
Visit the Yahoo! Auto Green Center.