Re: [TMIC] December Birthdays

[Roger & Terese Pratt]

Thank you.  It's nice to be remembered.
Roger Pratt in Kennewick, WA



 From: Pat Cooley 
To: Barbara H.  
Cc: tmic  
Sent: Monday, December 2, 2013 10:52 AM
Subject: Re: [TMIC] December Birthdays
 


HAPPY BIRTHDAY TO ALL THE CHRISTMAS BABIES.



On Mon, Dec 2, 2013 at 7:57 AM, Barbara H.  wrote:

Happy birthday to those celebrating in December!
>
>12-2 Meghan (bluemeg...@hotmail.com)
>
>12/2 Ashlee Black (tracey.bl...@hnoins.com)
>
>12/3  Janice (jannic...@gmail.com)
>
>12-3 Wim from Holland (wim_from_holl...@hotmail.com)
>
>12- 4 Jan Burgess (ja...@rogers.com)
>
>12-7 Patti in Wisconsin (patticoole...@gmail.com)
>
>12-8 Lori Malloy (jorlcummi...@earthlink.net)
>
>12-15  Alton Ryder(a-ry...@comcast.net)
>
>12-18 Rod Jenke (rktje...@chariot.com.au)
>
>12/23 Roger Pratt (r.c.pr...@frontier.com)
>
>12-25 Gilly (Also gillycl...@yahoo.com.au, and trinketgi...@gmail.com), 
>(mingalett...@activ8.net.au)
>
>12-27 (subers...@msn.com)
>
>12/31 Janet (j.d...@shaw.ca)
>
>

Re: [TMIC] Re: Attention -The TMIC List

[Roger & Terese Pratt]

Yes, Roger in Kennewick, WA



 From: Janice Nichols 
To: heyjude48...@aol.com; tmic-list@eskimo.com 
Sent: Thursday, May 2, 2013 1:46 PM
Subject: Re: [TMIC] Re: Attention -The TMIC List
 


Sorry I am late to respond.    Maybe we could 
ask all who read/respond to our website to let us know by just stating a “yes” 
or “no” to whether or not they are still a part of us.We do need to have some 
idea who is still getting 
our emails. Would you all please do so?
Janice
 
From: heyjude48...@aol.com 
Sent: Tuesday, April 30, 2013 8:38 PM
To: tmic-list@eskimo.com 
Subject: [TMIC] Re: Attention -The TMIC List
  Hi  
Everyone,
 
How are you doing 
tonight?  It's Jude Hoops and I am writing to let you know that eskimo.com 
may be having a problem with our emails.  It seems that some of the people 
who don't want to receive mail are telling AOL that our mail is Spam instead of 
just unsubscribing to the list.  It is because of their negligence that we 
may not get any more emails.
 
This list has been 
around for at least 12 years and I don't know how long before I signed on that 
it had been up and running.  I know the Quad list is going to another site, 
but I haven't heard anything about us.
 
Does anyone else know 
anything about this?  If you do will you please let me know.  I'm very 
worried about it.  I know that the list doesn't function the way that it 
used to but it is still important to me that we all stay in touch.
 
Oh, do any of you have 
the list of May Birthdays?  It usually comes around before the 1st and I 
haven't seen it yet for this month.
 
What do you think we 
should do?  (Again, I don't know if it applies to us too, or just the Quad 
list)
 
And one other thing, 
do any of you mind  if I use Pam's sign off of TIAD?  I just can't 
seem to help myself, it just keeps her alive in my heart.
 
TIAD,
Jude 
Hoops
Michigan

Re: [TMIC] Hello

[Roger & Terese Pratt]

Pat,

My second attack was not called TM because it was not an attack on the spinal 
chord, but rather an attack on the peripheral nerves.  Both are assumed to be 
auto-immune caused.  In other words, the immune system attacking the nerves, 
and both were treated with steroid IVs to stop the attack.  So many illnesses 
are auto-immune caused: MS, diabetes, and the list goes on.  Why this happens 
no one knows. It has been said that TM only happens once, but what do they 
know?  It's all a mystery to me.  And how do they find a cure, when they really 
don't understand the cause?  It's just my hope that all my TM, MS, and other 
auto-immune diseases (syndromes?) friends can find ways to cope and hopefully 
get better.

Roger in Kennewick, WA




 From: Pat Voorheis 
To: Roger & Terese Pratt  
Cc: Janice Nichols ; dee jay ; 
""  
Sent: Thursday, April 4, 2013 8:04 PM
Subject: Re: [TMIC] Hello
 

Anne and Roger,

I am perplexed by both of your posts because of how long you have had TM and 
that you have had further attacks after so many years.  Anne, you said you are 
now confined to a bed or wheelchair, but didn't say if it was the result of a 
new TM attack.  Did you have a second attack many years after the first?  I 
also wonder if either of you have a clue as to what triggered your attacks.  My 
TM was idiopathic and I truly believed after nine years of no new symptoms (I 
have plenty old symptoms) that I wasn't going to have a second attack.  Just 
one more reason to hope they find a cure. 

Patti - Michigan


On Apr 3, 2013, at 9:10 PM, Roger & Terese Pratt  wrote:


Anne,
>
>
>I have had TM for over 19 years, with a secondary attack in 2010 that resulted 
>in peripheral nerve damage.  I am on Lyrica, Cymbalta, Zanaflex, and Tylenol 
>PM for the TM stuff, other meds for high cholesterol and acid reflux.  While 
>the meds help some, I find that I just need to stay as positive as possible 
>and "grin and bear it".  Adverse reactions to meds and allergies are the pits, 
>but I say that is just because I am such a complex person.  I hope you find 
>some meds that help.
>
>
>Roger in Kennewick, WA 
>
>
>
>
> From: Pat Voorheis 
>To: Janice Nichols  
>Cc: dee jay ; "" 
> 
>Sent: Wednesday, April 3, 2013 5:34 PM
>Subject: Re: [TMIC] Hello
> 
>
>Hi Anne,
>
>
>I'm sorry to learn that you are experiencing difficulties after so many years 
>away from TM's clutches.  I take 10mg Baclofen every eight hours that almost 
>stops the banding. The banding is around my mid-section - like a corset.  I 
>also take Lyrica which has some muscle relaxing effects, but I really give 
>credit to the Baclofen. 
>
>
>I hope you can find a muscle relaxer that works for you.  Also, Baclofen is 
>inexpensive and Lyrica expensive if you do not have full drug insurance 
>coverage. 
>
>
>TM since 2003, age 53, lesion level was C4-C6.
>
>
>Patti -Michigan
>
>On Apr 1, 2013, at 12:10 PM, "Janice Nichols"  wrote:
>
>
>Anne,
>> 
>>Glad you found our group.    It would help if 
we knew what meds you were on.    Many of us are on different 
meds for the same problems.   Also, there are some meds that almost 
all of us take.
>>Some have more painful banding than others 
too.    I do not have “painful” banding, just a pressure 
feeling.   But I am sure you will hear from others that have more of a 
problem with it.
>> 
>>Come on TM’ers.    Anne needs help from all of 
you.
>> 
>>Janice
>>  
>>From: dee jay 
>>Sent: Sunday, March 31, 2013 9:05 PM
>>To: tmic-list@eskimo.com 
>>Subject: [TMIC] Hello
>>  Hello everyone.  My name is Anne and I have just joined your 
group.  I was diagnosed with TM in 1975, completely recovered, and then 23 
years later here I am confined to a wheelchair/hospital bed and will be for the 
rest of my life.  I hae just started experiencing this "banding" and have 
so many allergies to medications even the doctor does not know what to do.  
Any help would be appreciated.
>
>

Re: [TMIC] Hello

[Roger & Terese Pratt]

Anne,

I have had TM for over 19 years, with a secondary attack in 2010 that resulted 
in peripheral nerve damage.  I am on Lyrica, Cymbalta, Zanaflex, and Tylenol PM 
for the TM stuff, other meds for high cholesterol and acid reflux.  While the 
meds help some, I find that I just need to stay as positive as possible and 
"grin and bear it".  Adverse reactions to meds and allergies are the pits, but 
I say that is just because I am such a complex person.  I hope you find some 
meds that help.

Roger in Kennewick, WA 



 From: Pat Voorheis 
To: Janice Nichols  
Cc: dee jay ; "" 
 
Sent: Wednesday, April 3, 2013 5:34 PM
Subject: Re: [TMIC] Hello
 

Hi Anne,

I'm sorry to learn that you are experiencing difficulties after so many years 
away from TM's clutches.  I take 10mg Baclofen every eight hours that almost 
stops the banding. The banding is around my mid-section - like a corset.  I 
also take Lyrica which has some muscle relaxing effects, but I really give 
credit to the Baclofen. 

I hope you can find a muscle relaxer that works for you.  Also, Baclofen is 
inexpensive and Lyrica expensive if you do not have full drug insurance 
coverage. 

TM since 2003, age 53, lesion level was C4-C6.

Patti -Michigan

On Apr 1, 2013, at 12:10 PM, "Janice Nichols"  wrote:


Anne,
> 
>Glad you found our group.    It would help if 
we knew what meds you were on.    Many of us are on different 
meds for the same problems.   Also, there are some meds that almost 
all of us take.
>Some have more painful banding than others 
too.    I do not have “painful” banding, just a pressure 
feeling.   But I am sure you will hear from others that have more of a 
problem with it.
> 
>Come on TM’ers.    Anne needs help from all of 
you.
> 
>Janice
>  
>From: dee jay 
>Sent: Sunday, March 31, 2013 9:05 PM
>To: tmic-list@eskimo.com 
>Subject: [TMIC] Hello
>  Hello everyone.  My name is Anne and I have just joined your 
group.  I was diagnosed with TM in 1975, completely recovered, and then 23 
years later here I am confined to a wheelchair/hospital bed and will be for the 
rest of my life.  I hae just started experiencing this "banding" and have 
so many allergies to medications even the doctor does not know what to do.  
Any help would be appreciated.

Re: [TMIC]

[Roger & Terese Pratt]

Janice,  My wife has worked for Social Security for the past 18 years and has 
been aware of others in our area of Washington that have gotten TM as follows:
AGE: 12 - 3 people
     20's - 1 person
     40's - 2 people (one of them me)

Roger in Kennewick, WA



 From: Janice Nichols 
To: tmic-list@eskimo.com 
Sent: Monday, February 18, 2013 11:13 AM
Subject: [TMIC] 
 

Out of 27 people responding, this is what I came up 
with.    
 
    AGE:    13  -  1 
person    
STATE:    California – 3 persons
 
20’s  -  2 
people  
Michigan – 3 persons
 
30’s  -  2 
people  
New York area  -  3 persons
 
40’s  -  7 
people  
Virginia   -   2 persons
 
50’s  -  8 
people  
All the rest of the states were  -  1 person
 
60’s  -  7 
people   
 
70’s  -  1 
person  
UK  -  2  people
 
    
Was disappointed with how few responses there were  -  was hoping for 
a better tally.    Oh well.    
    
Here it is.
 
    
Janice

Re: [TMIC] question about sexual function

[Roger & Terese Pratt]

Jeff, I have had TM for 18+ years and yes I have this problem (and I am not 
paraplegic, just have nerve damage).  When I have asked doctors about it they 
look give me a blank look, suggest Viagra and then talk about something else.  
I have never heard of something that will resolve it.  Maybe someone else has 
better input (although this seems to be a sensitive subject that people tend to 
avoid).  Roger in Kennewick, WA



 From: jeff bernier 
To: tmic-list@eskimo.com; msersl...@yahoogroups.com 
Sent: Friday, January 25, 2013 2:59 PM
Subject: [TMIC] question about sexual function
 

serious question here,
is it possible for a paraplegic to engage in sex and achieve ejaculation after 
13 years without having done it,has anyone on here had this problem and what 
did they do to resolve it.
    jeff
   Tm 2000,Ms 2005 

Re: [TMIC] Internal Thermometer

[Roger & Terese Pratt]

John, I love your sense of humor! - Roger in Kennewick, WA



 From: john snodgrass 
To: transverse myelitis  
Sent: Friday, January 25, 2013 9:32 AM
Subject: Re: [TMIC] Internal Thermometer
 

i know the feeling..pun intended



 From: "heyjude48...@aol.com" 
To: tmic-list@eskimo.com 
Sent: Friday, January 25, 2013 12:30 PM
Subject: [TMIC] Internal Thermometer
 

Hello 
All,
 
My internal 
thermometer is compromised by TM.  I am constantly asking Dave to turn up 
the heat, or turn the heat down.  Does anyone else have this 
problem?
 
I can't stand it...it 
has the potential to cause problems in our marriage.
 
Love 
you,
Judy
Michigan
Dance like no one's 
watching, Sing like no one's listening, Love like you'll never be hurt, Play 
like there's no winners, Behave like mom's watching, Give like you have plenty, 
and Smile...(unknown"

Re: [TMIC] Internal Thermometer

[Roger & Terese Pratt]

This was more of a problem when I first was attacked by TM, but I still have 
decreased sense of hot and cold on my right side.  One thing that has been a 
mystery to me is that I now seem to sweat a lot with any increase in activity.  
Why this is strange is because when I first got TM I didn't sweat any below 
where my TM hit (C2 - C4 in my neck). Then I started sweating a lot just on my 
head and then it progressed slowly down over the next 10 to 15 years.  Weird, 
huh? - Roger in Kennewick, WA 



 From: "heyjude48...@aol.com" 
To: tmic-list@eskimo.com 
Sent: Friday, January 25, 2013 9:30 AM
Subject: [TMIC] Internal Thermometer
 

Hello 
All,
 
My internal 
thermometer is compromised by TM.  I am constantly asking Dave to turn up 
the heat, or turn the heat down.  Does anyone else have this 
problem?
 
I can't stand it...it 
has the potential to cause problems in our marriage.
 
Love 
you,
Judy
Michigan
Dance like no one's 
watching, Sing like no one's listening, Love like you'll never be hurt, Play 
like there's no winners, Behave like mom's watching, Give like you have plenty, 
and Smile...(unknown"

Re: [TMIC] Facebook

[Roger & Terese Pratt]

I too have trouble reading.  I find that I tend to speed read (skim).  I used 
to love to read, but now I get audio books so I can slow down. - Roger in 
Kennewick, WA



 From: Cindy McLeroy 
To: heyjude48...@aol.com; patticoole...@gmail.com; malugss...@gmail.com 
Cc: tmic-list@eskimo.com 
Sent: Thursday, January 24, 2013 1:20 PM
Subject: Re: [TMIC] Facebook
 

 
I love to read but for the last 10 
years or so I have extreme difficulty concentrating on reading a book.  It 
seems I have to read 10 pages, go back 5, read 10 more, go back 5.  Think 
every book I get through I must have read it at least twice.  Do others 
have this problem?
Cindy
- Original Message - 
>From: heyjude48...@aol.com 
>To: patticoole...@gmail.com ; malugss...@gmail.com 
>Cc: tmic-list@eskimo.com 
>Sent: Wednesday, January 23, 2013 10:17  AM
>Subject: Re: [TMIC] Facebook
>
>I disagree, unless  at 61 I am one of the younger ones.  I enjoy the words and 
>the  pictures.  I collect a lot of the (to me) inspirational photos.  I  get a 
>lot out of them, maybe because I haven't been reading as much as I used  to.
> 
>I have to get back  to my books.
> 
>Jude
>In a message dated 1/23/2013 11:39:25 A.M. Eastern Standard Time, 
>patticoole...@gmail.com writes:
>I AGREE COMPLETELY DALTON.
>> 
>>PATTI
>>
>>
>>On Wed, Jan 23, 2013 at 10:09 AM, Dalton Garis  wrote:
>>
>>For my situation, I don't need Facebook;
>>>
>>>But i 
  see that for the young they really like to send pictures to each 
  other.
>>>
>>>WE, on the other hand, grew up READING things rather than 
  VIEWING things, and that is the difference.  We read and the younger 
  set views.  It is WORDS ON A PAGE for us, but for the younger set 
  they IMAGE more.
>>>
>>>dg
>>>
>>>Dalton Garis
>>>Flushing, Queens
>>>New York, USA
>>>(718)  838-0437
>>>
>>>
>>

[TMIC] Re: Stress

[Roger & Terese Pratt]

First of all, let me say to Jude that I am really sorry to hear about Dave.  My 
prayers are with you.

Stress - what a difficult topic.  As I mentioned in a previous e-mail, I have 
gone through 3 different illnesses that I believe are all related (auto-immune 
problems).  All I can say is that stress has made all the symptoms/residuals 
(whatever you want to call them) worse.  Just when I think things are getting 
better, a bunch of stresses hit and then everything seems to go to 
hell-in-a-handbasket. So we all know that stress is a bad thing.

Some suggestions that I try to use for pain relief also seem to help with 
stress.  These include:

· Visual imagery and distraction: Imagery involves concentrating on
mental pictures of pleasant scenes or events or mentally repeating positive
words or phrases to reduce pain.
Distraction techniques focus your attention away from negative or painful 
images to
positive mental thoughts. This may include activities as simple as watching
television or a favorite movie, reading a book or listening to a book on tape,
listening to music, or talking to a friend.
* Age progression/regression: Use your mind’s eye to project yourself 
forward or backward in time to when you
are pain-free (or stress-free) or experiencing much less pain (or stress). Then 
instruct yourself to act
"as if" this image were true.
I know that at first I thought this was a bit lame, the old mind over matter 
silliness, but it can help some.  As others have said, I also place a lot of 
importance on faith and prayer.  I beieve very strongly that God loves us, and 
talking to Him helps a lot.

Just some thoughts - Roger in Kennewick, WA

Re: [TMIC] need for a neuroloist

[Roger & Terese Pratt]

My doctor has prescribed Zanaflex, which is a muscle relaxant.  Check with your 
doctor, but this might help. - Roger in Kennewick, WA



 From: Susan Kleinz 
To: I Whiddett  
Cc: "heyjude48...@aol.com" ; "pjv1...@chartermi.net" 
; "malugss...@gmail.com" ; 
"patticoole...@gmail.com" ; "lbieh...@earthlink.net" 
; "lbobber...@earthlink.net" 
; "bernie.butc...@honeywell.com" 
; "anndil...@aol.com" ; 
"em...@telephonelady.com" ; 
"gbthomas8...@sbcglobal.net" ; "lyhat...@aol.com" 
; "tmic-list@eskimo.com"  
Sent: Wednesday, January 16, 2013 11:03 AM
Subject: Re: [TMIC] need for a neuroloist
 

I was diagnosed with TM two years ago.
20 years prior - probable MS
I think keeping a neurologist is paramount.  New things happen every day!  My 
family doctor, gynecologist, orthopod had never heard (or believe) in TM!  So 
frustrating
I have constant banding, and would love to know if anyone has had any luck with 
anything.  (I do have a brace I wear to handle housework (such as vacuuming), 
and it helps.
Susan

On Jan 16, 2013, at 11:57 AM, I Whiddett wrote:

On the subject of the need for a neurologist, I was discharged by mine after 
two years on the grounds that there was nothing else to be done to help me.  
This leaves me in care of my GP practice where there is now no doctor with any 
knowledge of TM.  Their only function for me is to renew my prescription for 
Amitriptyline, as prescribed by the neurologist 3 1/2 years ago at the onset of 
TM.  I'm really pleased to see the group is still here as I have been wanting 
to ask if anyone is aware of a drug that helps specifically with "banding" 
present 24/7 and intensifying in cold/hot weather.  I'm unable to go out in the 
present cold weather and I don't think Amitriptyline helps at all, not even 
with sleeping any more.  I'd appreciate any advice.
>Iris
>
>On Wednesday, January 16, 2013,   wrote:
>
> 
>>We are talking about the need for a neurologist.  I just saw mine yesterday.  
>>For my pain he recommended a pain pump.  I'm going to have a trial pump put 
>>in to see if it will work for me.  If it does, they will implant a permanent 
>>one in my body, next to the spine with a catheter leading out to my abdomen 
>>where the pump can be refilled periodically.  The medication last about six 
>>months before it must be refilled.
>> 
>>I have so much pain because I have a broken leg that is not healing.  It's 
>>been almost 1 & 1/2 years.  The pain is intense on top of my TM pain.  I'm 
>>taking strong medication to just get by.
>> 
>>Guess I 'talked' your ears off.  Will go for now.
>> 
>>Judy in Michigan
>> 
>>In a message dated 1/16/2013 8:16:47 A.M. Eastern Standard Time, 
>>pjv1...@chartermi.net writes:
>>The description you gave sounds familiar. I didn't and could not have   gone 
>>back to my banking job. My biggest anxiety in the early days of TM was my   
>>inability to think.  It took four months before i could read And longer   to 
>>comprehend. I got stuck or stumbled on words when trying to talk and   
>>literally sounded drunk.  Had a hard time between left and right.   Couldn't 
>>follow directions. Got lost in buildings, because I always turned the   wrong 
>>way. Did things backwards. I had to have a note for   everything. 
>>>
>>>I worked hard to overcome those issues.  I sat   for hours reading tmic and 
>>>the TM forum.  Typed with two fingers to write   my posts, tried for days to 
>>>make a flow-chart, and even had a nine year old   come after school two days 
>>>a week to play kids games and build items with   Legos.
>>>
>>>
>>>I felt like the steroids fried my brain.  I'm much, much better and   thank 
>>>God everyday for the improvements.  
>>>
>>>
>>>Patti V - Michigan 
>>>
>>>
>>>
>>>Sent from my iPad
>>>
>>>On Jan 15, 2013, at 10:44 PM, Dalton Gariswrote:
>>>
>>>
>>>Cognitive problems, did you say???


Please elaborate.  I was a high-flying associate professor economist in 
an engineering school when getting TM in 2010.  Then I began to 
experience the unthinkable—literally.  I could go into class and do the 
entire lecture from my head.  But after TM I would get to a point in 
the delivery when it was time to pull out some element from my head 
and, it wouldn't be there!  It had always been there, but now I 
couldn't recall it.  It was shocking and humiliating to say the least.  
It finally did me in.


Please tell me about these cognitive problems you mentioned.


DG

From: 
Date: Tuesday, 15 January 2013 9:53 PM
To: tmic 
Subject: [TMIC] need for a neuroloist
Resent-From: 
Resent-Date: Tue, 15 Jan 2013 18:53:27 -0800



I had the same neurologist for first five years of TM.  I had several 
MRI's and he was satisfied that I didn't have MS (TM left me with 
cognitive problems).  I had been on the same medications for two years, 
m

Re: [TMIC] Fw: AWESOME CHRISTMAS CARD

[Roger & Terese Pratt]

Thanks, Janice. - Roger in Kennewick, WA



 From: Janice Nichols 
To: tmic  
Sent: Thursday, December 13, 2012 9:44 AM
Subject: [TMIC] Fw: AWESOME CHRISTMAS CARD
 

 
   TO ALL OF MY BEST FRIENDS DEALING WITH THE SAME DISEASE I 
HAVE. WE HAVE SO MUCH IN COMMON AND I LOVE THAT I 
CAN GO TO
  ANY/ALL OF YOU WITH ANY QUESTIONS OR 
CONCERNS I MAY HAVE. YOU ARE THE BEST AND I WANT YOUR 
CHRISTMAS AND THE WHOLE OF
 
NEXT YEAR TO BE THE BEST YET.  GOD BLESS YOU 
ALL.
 
 
JANICE




  
>
>
>  
>  
> 
>> 
>> 
>> 
>> 
>>    
>>    
>> 
 
> 
> 
 
> 
>The  Christmas Season is upon us!  Hope you  haven't seen it yet. 
>Enjoy and pass on if you  think others would enjoy. Have a great  
>day. 
>Click on  this  link:  
>http://www.jacquielawson.com/viewcard.asp?code=2007134554829&source=jl999
> 
> 
> 
>  
>      
> 
>> 
>>  
>> 
>>
>>
>>
>>--  
>> 
>>      
> 
>  

Re: [TMIC] December birthdays

[Roger & Terese Pratt]

"Here are a nice pair of socks.  You'll get more for Christmas.  Don't worry."  
Ah,yes, the two-for-one presents.  I also got told that I was lucky that they 
put up all the pretty lights for my birthday.
But I always thought the having a birthday so close to Christmas was neat. - 
Roger, in Kennewick, WA


 From: Barbara H. 
To: a-ry...@comcast.net 
Cc: tmic  
Sent: Sunday, December 2, 2012 11:38 AM
Subject: Re: [TMIC] December birthdays
 

My step-father's birthday is a few days after Christmas and he often gets 
"two-for-one" presents, too.

Barbara H.


On Sun, Dec 2, 2012 at 10:15 AM,  wrote:

I used to think it a bummer that my birthday was ten days before Christmas, 
>but now I see that Roger and Gilly have theirs much closer.
>
>Alton, who as a kid would get two-for-one presents

Re: [TMIC] Fwd: The Great Swimming/Diving Adventure

[Roger & Terese Pratt]

Jim, I congratulate your bravery.  Good luck making it happen. - Roger in Kennewick, WAFrom: Janice Nichols  To: James Berg ; tmic-l...@eskimo.net  Sent: Sunday, August 12, 2012 5:14 PM Subject: Re: [TMIC] Fwd: The Great Swimming/Diving Adventure   




Okay – you gave it a great try.    No faulting 
that.   What doesn’t work one way, ingenuity can figure out another 
way.  I have all the confidence in the world 
for
you to accomplish this feat, just don’t go into the water 
alone!!   
Janice
 


 

From: James Berg 
Sent: Sunday, August 12, 2012 4:35 PM
To: tmic-l...@eskimo.net 
Subject: [TMIC] Fwd: The Great Swimming/Diving 
Adventure
 
Please 
laugh with me.  See below.
-- Forwarded message --From: James Berg Date: 
Sun, Aug 12, 2012 at 11:34 AMSubject: The Great Swimming/Diving 
AdventureTo: Larry Shawhan , Luigi 
Manera , Peter Berg 
, Allen 
Beard , 
William Berg , rmoore9011 , James Berg Just 
didn't work.  First of all, my leaden legs that are so heavy arereally 
large cork floats and didn't need any floatation at all.Secondly, even 
without additional flotation, my floaty legs flipped meover very easily and 
I found my self on my back with my snorkle in thewater.  I really don't 
like breathing water.  The life vest helped butmy legs continued to be 
a problem.  Of course you can't dive with avest on.  What really 
did work well was using an old wheel chair toaccess the boat launch 
ramp.  In and out worked well.So next time we'll try leg weights, 
but not too much, I don't want todrag on the reef and  some type of 
waist/chest flotation device.Thanks to my friends and family for the 
help or I would have drowned.Jim
 

Re: [TMIC] August Birthdays

[Roger & Terese Pratt]

Yes, Happy Birthday from me, too.  August is a wonderful month.  Two of my kids 
were born on August 3rd, 7 years and 1 hours apart. - Roger in Kennewick, WA



 From: Pat Cooley 
To: Barbara H.  
Cc: tmic  
Sent: Wednesday, August 1, 2012 7:07 AM
Subject: Re: [TMIC] August Birthdays
 
HAPPY BIRTHDAY TO ALL YOU AUGUST BABIES.

On Tue, Jul 31, 2012 at 11:35 PM, Barbara H.  wrote:
> August is one of the biggest birthday months for TMers! Happy Birthday to my
> fellow August birthday celebrants!
>
> Please send any additions or corrections to tmic-list@eskimo.com.
>
> 8/1 Peachi (pkeene2...@aol.com)
>
> 8/1 Cindy McLeroy (cindymcle...@socal.rr.com)
>
> 8- 1 Stacy Firth (safi...@dow.com )
>
> 8-3 Larry Throne (lbthr...@hotmail.com )
>
> 8-10 Sean Indiveri (sindiv...@hotmail.com)
>
> 8-11 Raylene Gökeri (mrs_gok...@yahoo.com)
>
> 8-11 Michelle Maricic (mmari...@aol.com)
>
> 8-11  Dalida S. Ortiz de Garcia (py...@yahoo.com)
>
> 08/17 Sandra (Harth) Brassil (sbras...@aol.com)
>
> 8-17 Kim (jnks...@huntel.net)
>
> 8-19 Saroj (sarojkumar...@gmail.com)
>
> 8-21 Barbara H. (barbara...@gmail.com)
>
> 8-23 Cole (neilandwe...@rogers.com)
>
> 8-29 Kathleen (kathleen.kar...@gmail.com)
>
> 8- 31 Robin in Ontario(Brampton)(rjohnson1...@rogers.com )
>
>

Re: [TMIC] try this

[Roger & Terese Pratt]

I had a terrible cramp in my shin last night in the middle of the night as a 
result of my water exercises earlier in the day.  I tried this and it worked 
great! Roger in Kennewick, WA



 From: Janice Nichols 
To: Bridget Skinner ; tmic-list@eskimo.com; 
msersl...@yahoogroups.com 
Sent: Friday, July 27, 2012 9:04 AM
Subject: Re: [TMIC] try this
 

Guys, this is really encouraging!!    I am 
going to try it too.
Janice
  
From: Bridget Skinner 
Sent: Friday, July 27, 2012 10:07 AM
To: tmic-list@eskimo.com ; msersl...@yahoogroups.com 
Subject: Re: [TMIC] try this
  Sorry 
I twitched and hit the send button too early. Anyway, it didn't bother me at 
all. I used it knees to toes. Made all the difference in the world. When I have 
taken my baclofen and still hurt this is the way to go.  You would think 
morphine and norco would take care of these sensations but they take care of 
other types of pain - not spastisity or nerve pain. Thank you for the tip. It's 
nice to use something that I can pick up something at the store that really 
works and I don't need to see a doc first.   


On Fri, Jul 27, 2012 at 8:26 AM, Bridget Skinner  wrote:

I  believe I didn't send this to the whole group when I replied. And if I did, 
I  apologize for sending it again. 
 
I  was concerned about using the Aspercreme Heat Pain Relieving Gel because of 
my  inability to feel heat but my husband had a good idea -- just try it on one 
 little spot and if it bothers me than its an easy wipe off. Well it didn't 
>
>
>---
>I  take 80mg a day of Baclofen and still have problems although it REALLY 
>helps  me. 20mg 4x a day. Doc is going to keep me at that. So, I thought I 
>would just  get used to what it isn't taking care of. Went to CVS this evening 
>and  purchased the "Fast Acting Therapy Aspercreme Heat Pain Relieving Gel"  
>Hopefully this is the right kind. (little nervous since I can't feel heat) But 
> I am so excited to see if this works. I will use it tonight and let y'all 
>know  how it worked for me.  
> 
>Please,  if anyone has tried it and has problems with topical pain or the 
>inability to  feel heat let me know if it makes a difference. 
> 
>THANK  YOU
> 
>Forwarded  conversation
>Subject: [TMIC] try  this
>
>
>From: jeff bernier 
>Date: Thu, Jul 26, 
  2012 at 10:16 AM
>To: tmic-list@eskimo.com, msersl...@yahoogroups.com
>
> 
>
>
>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. 
>--
>From: john snodgrass 
>Date: Thu, Jul 26, 2012 at 
  10:28 AM
>To: "tmic-list@eskimo.com" 
>
>
>
>i had heard of using hot muscle rub but never tried it but i might  now.
>
>
>thanks Jeff
> 
>
>
> From: jeff bernier 
>To: tmic-list@eskimo.com; msersl...@yahoogroups.com 
>Sent: Thursday, July 26, 2012 11:16  AM
>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. 
>
>
>--
>From: Janice Nichols 
>Date: Thu, Jul 26, 2012 
  at 10:32 AM
>To: jeff bernier , tmic-list@eskimo.com, 
>msersl...@yahoogroups.com
>
> 
> 
>Thanks.    I take baclofen and it works most  every nite, but then I have the 
>occasional problem  nite. Will try aspercream.
>Janice
>  
>From: jeff bernier 
>Sent: Thursday, July 26, 2012 10:16 AM
>To: tmic-list@eskimo.com ; msersl...@yahoogroups.com 
>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. 
> --
>From: 
>Date: Thu, Jul 26, 
  2012 at 12:43 PM
>To: jeff bernier , tmic-list@eskimo.com, 
>msersl...@yahoogroups.com
>
>
> 
>Do you put it directly on the muscles that are spasing?
>
>Sent from my Verizon Wireless BlackBerry
>
>
> 
>From: jeff bernier  
>Date: Thu, 26 Jul 2012 08:16:02 -0700 (PDT)
>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. 
>--
>From: Bridget Skinner 
>Date: Thu, Jul 26, 2012 at 
  7:59 PM
>To: Janice Nichols 
>
> 
>
>I take 80mg a day of Baclofen and still have problems 
  alt

Re: [TMIC] Cold Laser

[Roger & Terese Pratt]

I looked it up, and it doesn't seem to have any long-term effect.  I know 
chiropractors use it.  It might be good for short term relief and they suggest 
that heat may work as well.  I'm interested as to what others may have to say. 
- Roger in Kennewick, WA 



 From: Janice Nichols 
To: Janet Dunn ; tmic-list@eskimo.com 
Sent: Wednesday, July 18, 2012 10:44 AM
Subject: Re: [TMIC] Cold Laser
 

Hi!
I have not heard of cold laser at all, but it sure sounds 
encouraging.    
Frank, have you heard of this?
Janice
  
From: Janet Dunn 
Sent: Tuesday, July 17, 2012 11:31 PM
To: tmic-list@eskimo.com 
Subject: [TMIC] Cold Laser
  
Hello All

Today I was speaking with a lady who 
has intense nerve pain from some kind of knee or leg injury.  She said she 
was getting cold laser treatments and that the treatments really helped.  
She was thinking that perhaps they would work for the nerve pain that comes 
with 
TM.

So, I was wondering if anyone has either heard of this treatment, or 
has had the treatment, or any other info on this cold laser for 
TM.

Thanks

Janet

Re: [TMIC] Rick back on list.

[Roger & Terese Pratt]

My welcome back to Rick, also.  It's good to hear from you, Linda, and all.  My 
lesion in C2-C4 and I have numbness in my hands, tremors occasionally, and 
sometimes even muscle spasm type seizures.  They are very disconcerting, but 
usually are stopped by muscle relaxants.  I have had TM for 18 years and 
another autoimmune disorder that attacked peripheral nerves that came on about 
2 years ago.  I now take azathioprine, which is an immune system suppressant.  
Well, my best to everyone. - Roger in Kennewick, WA  



 From: Linda Cherpeski 
To: le...@sbcglobal.net; el...@att.net 
Cc: TM List  
Sent: Friday, July 13, 2012 3:05 PM
Subject: RE: [TMIC] Rick back on list.
 

 

Hi Rick and Linda ~ I am still here also.  This is where the support all began 
for me 10 years ago.  I know there are TMers on FB, but there are a lot of 
people from this group that I haven't seen anywhere for quite some time.  Miss 
everybody.  Rick I'm so sorry about your insurance. I still have insurance (and 
Medicare) and my out-of-pocket expenses scare me! Had to laugh ~when you 
mentioned a certain name and said your e-mail will once again be monitored 
constantly. lol  I think we all are to a certain extent anyway. There is no 
such thing as "privacy" anymore, in my opinion.
Linda, this tremor and numbness in your hands - are your lesions up high - in 
your C spine?
I'm also glad to see some action on this site.  I know Janice is still here - 
maybe she'll stop by soon.
Take care you guys,
Linda C (Boise, ID) 



Date: Fri, 13 Jul 2012 08:42:13 -0700
From: le...@sbcglobal.net
Subject: Re: [TMIC] Rick back on list.
To: el...@att.net
CC: tmic-list@eskimo.com


I am still here.  Not a lot of talk on this site anymore, I think most use 
Facebook.  I am now going on 8 1/2 years with TM & I guess I am as good as I'm 
going to be.  My neurologist said last December that he no longer needs to see 
me unless their is a problem.  I am just followed by my PCP, but she is very 
good.  I haven't heard anything from or about Jude in a long time.  I haven't 
heard about anything new to try - wish there was.    I developed a bad tremor 
in my right hand(of course I am right handed) after 3years with TM & the 
numbness in my hands can be really bad, but I manage as best I can.  Glad to 
see some talk on this site.
Linda E.  



 From: Richard Ashford 
To: tmic-list@eskimo.com 
Sent: Friday, July 13, 2012 1:09 AM
Subject: [TMIC] Rick back on list.
 
Hello everyone who might remember me. I hope all of you are as well as tm will 
let you be. I'm looking forward to hearing from you who want to be in touch 
with 
me. I'm also looking forward to hearing if there has been any serious advances 
in our treatments. Gunny, Grace, Barb, Jude all the old crew I hope especially 
to hear form you. My condition has not changed, and my insurance and medicaid 
compleatly realeased me so now I'm having to pay out the nose for personal 
insurance. Thanks Barack! Well any way my e-mail will be monitored constantly 
again. I wish all of you the best of everything and hope to talk to you soon. 
Sincerely Rick Ashford 

Re: [TMIC] July Birthdays

[Roger & Terese Pratt]

Thanks, I need that, even if it isn't my birthday!

Roger in Kennewick, WA



 From: Elizabeth Clark 
To: 'tmic'  
Sent: Thursday, July 5, 2012 7:22 PM
Subject: RE: [TMIC] July Birthdays
 

 
HAPPY BIRTHDAY!!...
 
HOW TO
STAY YOUNG ~

1. Throw out non-essential numbers. This includes age, weight and height. Let 
the
doctors worry about them. That is why you pay 'them.'
  
2. Keep only cheerful friends. The grouches pull you down. 
  
3. Keep learning. Learn more
about the computer, crafts, gardening, whatever. Never let the brain idle.
'An idle mind is the devil's workshop.' 
  
4. Enjoy the simple things. 
  
5. Laugh often, long and loud. Laugh until you gasp for breath. 
  
6. The tears happen. Endure, grieve,
and move on. The only person, who is with us our entire life, is
ourselves. Be ALIVE while you are alive. 
  
7. Surround yourself with what you love, whether it's family, pets, keepsakes, 
music, plants,
hobbies, whatever. Your home is your refuge. 
  
8. Cherish your health: If it is good, preserve it. If it is unstable,
improve it. If it is beyond what you can improve, get help. 
  
9. Don't take guilt trips. Take a
trip to the mall, even to the next county; to a foreign country but NOT to
where the guilt is. 
  
10. Tell the people you love that you
love them, at every opportunity. 
  
AND ALWAYS REMEMBER: 
Worry about nothing, pray
about everything!!! 
 


 
From:Barbara
H. [mailto: barbara...@gmail.com ] 
Sent: Thursday, July 05, 2012 3:01
PM
To: tmic
Subject: [TMIC] July Birthdays
 
Happy Birthday to the July kids! Hope you enjoyed the
fireworks! :-)

Please send any additions or corrections to tmic-list@eskimo.com.

7-5 Sumer 
(fjs181...@aol.com)

7/5 Rick in tn (ashfo...@att.net)

7-14 Julie (chi...@cox.net)

7-15  Sandi Siegel (ssie...@myelitis.org)

7-24 Kevin Weilacher (hwyfli...@yahoo.com)

7-25 Peggy Wilson (pwi1991...@aol.com)

7-25 (jennapa...@aol.com)

7-25 Michelle Balliet (chelley...@aol.com)

7-27 Linda (lp...@aol.com)

7/29 Hildred (missprissgran...@aol.com)

7/30 Dex Packard (d...@centurytel.net)

Re: [TMIC] Looking for input.

[Roger & Terese Pratt]

I had one full seizure and many, many mini-seizures (didn't pass out, just lots 
of muscle spasms and trouble talking)for 2 years before I was diagnosed with 
TM.  I can still have them only very occasionally when I get really tired.  
Medication does help and they usually don't happen until late evening when I 
try to relax.  This TM business can be really complex sometimes.

Roger in Kennewick, WA  



 From: Janice Nichols 
To: Dalton Garis ; Janet Dunn ; 
tmic-list@eskimo.com 
Sent: Tuesday, June 26, 2012 6:48 PM
Subject: Re: [TMIC] Looking for input.
 

Actually, I am doing pretty well.    Still 
getting stronger in my legs after 5 years of TM.    Balance isn’t 
terrific, but I can deal with it.
What do you do to keep your brain going since you are 
practically a shut in now? You always kept busy with 
mental activities.    You and Bridget are the only
ones I have known that have the seizure 
problems.    Surely the doc’s can come up with something for you 
two to carry on decent lives.    I pray for you 
both.
Janice
  
From: Dalton Garis 
Sent: Tuesday, June 26, 2012 3:13 PM
To: Janice Nichols ; Janet Dunn ; tmic-list@eskimo.com 
Subject: Re: [TMIC] Looking for input.
  Actually;
 
The 
situation was much improved for a while.  But now they are back again, 
having Segwayed into a kind of mental fog, which comes on quickly then leaves 
me 
with limited speech and locomotion capacities, and in need of around 3-4 hours 
sleep almost immediately.  I am really a shut-in now, since I can't depend 
on more than around 6 hours of lucidity before the next attack.
 
How are 
you doing?
 
Love to 
all,
 
DG
Dalton H. 
Garis
Flushing, 
Queens
New York, 
USA
From: Janice Nichols 
Date: Tuesday, 26 January 2012 10:23 
AM
To: Dalton Garis , Janet Dunn 
, 
Subject: Re: [TMIC] Looking for 
input.

 
Dalton, how are you doing with your 
seizures? Haven’t heard much about it 
lately. Hope it means there is vast 
improvement.
Janice 
From: Dalton Garis 
Sent: Monday, June 25, 2012 9:59 PM
To: Janet 
Dunn ; tmic-list@eskimo.com 
Subject: Re: [TMIC] Looking for input.
  We love 
you, and your struggle;
 
It is all 
of our struggles, also.  Our solidarity has done sooo much to keep me 
going, to get up and try to make something useful of the lucid and 
non-distracted time I can get.
 
DG
 
Dalton H. 
Garis
Flushing, 
Queens
New York, 
USA

 From: Janet Dunn 
Date: Monday, 25 January 2012 10:43 PM
To: "tmic-list@eskimo.com" 
Subject: Re: [TMIC] Looking for input.
Resent-From: 
Resent-Date: Mon, 25 Jun 2012 19:48:11 
-0700

 
Thank you for all of the replies.  I 
am going to try the baclofen as needed.  Yes, I am taking other meds - 
effexor, welbutrin, oxycontin fast acting, and oxycontin time release, and 
either tylenol or advil.  I also have flexeril if I need it.

I have 
come to the conclusion that it is a combination of the  lack of Lyrica 
and  the heat.  Hot for us where I live is 24 degrees celcius - which 
is about 75 degrees.  Cold is -35 or 40.

I don't want to go back on 
the Lyrica, so I am going to try the baclofen.  I have never had spasms 
like this before.  Wow - how some of you live with bigger and badder (I 
know, I know) spasms is beyond me.  I cannot tolerate the pain and 
uncomfortableness of the darn things.

Always something new to enjoy ahem, 
ahem.  It will be eight years in August for me, and this disease never 
ceases to frustrate me.

Thanks again, so glad we are such a friendly 
helpful group.  I will not whine about the heat again after hearing how hot 
it is in Texas, and other places.  Where I live we may get one or two days 
of 30 Celcius which is about 82ish.  And then we get an awesome thunder 
show.

Take care my friends, 

Love 
Janet

Re: [TMIC] Looking for input.

[Roger & Terese Pratt]

ME TOO! Although the Lyrica makes my thinking fuzzy, I really hate the "Roman 
candle" or as I put it, "The demon with the taser gun".  I have tried so many 
medications, and all of them either don't work or have really negative side 
effects.  Hot and cold effect me too, either lots of fatigue or pain.

Roger in Kennewick, WA



 From: Dalton Garis 
To: Todd Tarno ; TMIC  
Sent: Monday, June 25, 2012 4:19 PM
Subject: Re: [TMIC] Looking for input.
 

Folks,

If I forget to take Lyrica, then within hours I light up from within like a 
Roman candle.  Suddenly, it is as if I am being dragged through a prickly pear 
patch.  I'm not kidding: I would need hospitalization and enough other meds 
that I would be a zombe.

DG

Dalton H. Garis
Flushing, Queens
New York, USA
From:  Todd Tarno 
Date:  Monday, 25  January 2012 3:49 PM
To:  TMIC 
Subject:  Re: [TMIC] Looking for input.
Resent-From:  
Resent-Date:  Mon, 25 Jun 2012 12:53:55 -0700


I have only got good things to say, about getting off Lyrica.
Was on Neuronten for 5 yrs & Lyrica for 5 yrs.

1. Had a bad reaction with one of my other medication.
2. I lost 10 lbs in the first 2 months.
3. Got more good feeling in both of my legs.
With the heat & no AC right now, I'm having trouble with the stiffness of both 
legs.  Hope to get a new unit this week.
Todd in Warm Corpus Christi, TX 
Bernie: ( where for the next 3 months it will average about 95 to 105 degrees 
at the peak heat in the afternoon ) 

--- On Mon, 6/25/12, john snodgrass wrote:


>From: john snodgrass 
>Subject: Re: [TMIC] Looking for input.
>To: "Bernie Pelow" , "Janet Dunn" , 
>"TMIC" 
>Date: Monday, June 25, 2012, 11:55 AM
>
>
>Bernie i have noticed that when i make it snow in here i sleep better,,,lol
>
>
>
>
> From: Bernie Pelow 
>To: Janet Dunn ; TMIC  
>Sent: Monday, June 25, 2012 11:46 AM
>Subject: Re: [TMIC] Looking for input.
> 
>
>Hi Janet,
>  You're not the only one who finds heat a problem. I live in
Texas and literally have to stay indoors all summer, only
venturing out in the late evening if it is cool enough. Mine is
because my body cannot regulate temperature, and  I cannot sweat
at all because of the damage to the spinal cord. Even when I go
out at night after it has dropped down to 70, I sometimes still
have problems. And it does wreak havoc with my spasticity,
especially at night. The one relief I've found is to keep my
apartment at about 66 degrees during the night, it helps keep
the number of spasms down for some reason. Hope things get
better for you...
>Peace,
>Bernie in HOT Texas
>(where for the next 3 months it will average about 105 to 110
degrees at peak heat in the afternoon)
> 
>
> 

Re: [TMIC]

[Roger & Terese Pratt]

I wish this was only a female problem. I've had TM for 18 years. I used to have 
to take pills just to be able to go, and although I have gotten enough better 
not to have to take the pills, not having my bladder work right still continues 
to be a problem. TM has also terminated my sexual function (which is a whole 
nother story). It is my opinion that once the nerves are damaged, full recovery 
may never happen. - Roger in Kennewick, WA 

- Original Message - 
From: "Janice Nichols"  
To: tmic-list@eskimo.com 
Sent: Wednesday, May 23, 2012 12:45:29 AM 
Subject: [TMIC] 




Hi TM’ers, 

This question probably pertains mostly to female TM’ers, but maybe not. 

Is it my imagination or have you all noticed that spasms increase from the 
waist down, legs included, when the bladder is saying it is time to 
go to the bathroom? I have changed the wording several times to make it say 
what I am trying to ask. Hope you get my meaning. 

Also, have any of you gotten consistent improvement in bladder control or have 
you pretty much leveled out as far as improvement is concerned. If you keep 
improving, 
please give me the length of time you have had TM. I have had TM for 5 years 
and seem to go back and forth, sometimes 2-3 weeks at a time, waking up with 
wet pads 
and then, for a while, fairly dry (but never completely). It doesn’t seem to 
matter how much I drink during the day or in the evening. When I was in the 
hospital, the doc’s 
kept talking about my bladder needing time to “wake up” after being paralyzed. 
Well, mine seems to wake up a little and then snoozes again. Frustrating. 

Janice

Re: [TMIC] Fw: Automimmune disorders

[Roger & Terese Pratt]

Thanks, Gary. Most people have not even heard of autoimmune disorders. - Roger 
in Kennewick, WA 

- Original Message - 
From: "Gary Thomas"  
To: tmic-list@eskimo.com 
Sent: Wednesday, May 9, 2012 7:36:08 AM 
Subject: [TMIC] Fw: Automimmune disorders 



- Original Message - 
From: Gary Thomas 
To: Transverse Myelitis list 
Sent: Wednesday, May 09, 2012 10:29 AM 
Subject: Automimmune disorders 


This was in today's South Bend (Indiana) Tribune. It deals with "hard to 
diagnose" autoimmune disorders. 

Gary (Niles, MI) 

http://www.southbendtribune.com/features/ourlives/sbt-20120509sbtmichb-08-03-20120509,0,5304526.story
 

RE: [TMIC] No mail

[Roger & Terese Pratt]

James,  I thought maybe you had unsubscribed.  Good to hear from you.  We
are all still out here, just some days are better than others and we don't
post that much anymore.  Roger in Kennewick, WA

 

 

  _  

From: James Berg [mailto:molokai...@gmail.com] 
Sent: Tuesday, March 27, 2012 1:12 PM
To: transverse myelitis
Subject: [TMIC] No mail

 

Just checking if there is something wrong with my email

I have received nothing on the Tm site since March 14.  Would somebody send
me a Hi so I know you all are still there?

RE: [TMIC] Squeezes

[Roger & Terese Pratt]

Unfortunately, yes.  Muscle spasms, including full body ones, just seem to
be part of the territory. - Roger in Kennewick, WA 

 

  _  

From: James Berg [mailto:molokai...@gmail.com] 
Sent: Wednesday, January 25, 2012 12:55 PM
To: transverse myelitis
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] 35 Things you probably don't know about TM

[Roger & Terese Pratt]

I just did select all, then copy, and pasted it into a word document. -
Roger in Kennewick, WA

 

 

  _  

From: Gary Thomas [mailto:gbthomas8...@sbcglobal.net] 
Sent: Tuesday, January 24, 2012 7:59 PM
To: john snodgrass; transverse myelitis
Subject: Re: [TMIC] 35 Things you probably don't know about TM

 

  John. This is a good list.  I would like to have it to copy without
re-typing it .  It came out (at least in my email) "scrunched" together.  Is
there a way to resend it in a better form.  Thanks. Gary

- Original Message - 

From: john snodgrass   

To: transverse   myelitis 

Sent: Tuesday, January 24, 2012 10:47 PM

Subject: [TMIC] 35 Things you probably don't know about TM

 

seen this on facebook and didnt know if it was passed to this group or not.
A list to share with Dr's and family to help inform them about our
condition.

john

 

 

35 Things you probably don't know about TM
 
1. It is a cousin disorder to Multiple Sclerosis.
http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/projec
t_restore/conditions/
 
2. Fairly rare disorder, only 2-5 people per million get it.
 
3. Approx. 1400 new cases a year in the U.S.
http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyeli
tis.htm
 
4. Roughly 33,000 people with TM in U.S.
http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyeli
tis.htm
 
5. Transverse myelitis occurs in adults and children, in both genders, and
in all
races.
http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyeli
tis.htm
 
6. Can be Acute (happening within hours) or Subacute (happening within days
or weeks) 
 
7. The inflammation that causes such extensive damage to nerve fibers of the
spinal cord may result from viral infections, abnormal immune reactions, or
insufficient blood flow through the blood vessels located in the spinal
cord.
Transverse myelitis also may occur as a complication of syphilis, measles,
Lyme disease, and some vaccinations, including those for chickenpox and
rabies.
 
8. Can be Idiopathic (no known cause)
 
9. Typically a one time occurrence but there are some that have recurrent
TM.
 
10. 10% or better possibility of developing Multiple Sclerosis but the
possibility is fairly low if there is a normal brain MRI at TM
onset...http://www.ncbi.nlm.nih.gov/pubmed/18080852
 
11.Most symptoms of TM are identical to MS
 
12.Prevailing difference between TM and MS is that lesions are on spinal
nerve in
TM and on Brain in MS.
 
13.Transverse myelitis is a neurological disorder caused by inflammation
across
both sides of one level, or segment, of the spinal cord. This damage causes
nervous system scars that interrupt communications between the nerves in
the spinal cord and the rest of the body.
 
14. The inflammation and lesion created, is caused by the bodies own immune
system attacking the myelin coating of the spinal nerve.
 
15.The segment of the spinal cord at which the damage occurs determines
which
parts of the body are affected. Nerves in the cervical (neck) region control
signals to the neck, arms, hands, and muscles of breathing (the diaphragm).
Nerves in the thoracic (upper back) region relay signals to the torso and
some
parts of the arms. Nerves at the lumbar (mid-back) level control signals to
the
hips and legs. Finally, sacral nerves, located within the lowest segment of
the
spinal cord, relay signals to the groin, toes, and some parts of the legs.
Damage
at one segment will affect function at that segment and segments below it.
In
patients with transverse myelitis, demyelination usually occurs at the
thoracic
level, causing problems with leg movement and bowel and bladder control,
which require signals from the lower segments of the spinal cord.
http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyeli
tis.htm
 
16.About one-third of people affected with transverse myelitis experience
good or
full recovery from their symptoms; they regain the ability to walk normally
and experience minimal urinary or bowel effects and paresthesias. Another
one-third show only fair recovery and are left with significant deficits
such as
spastic gait, sensory dysfunction, and prominent urinary urgency or
incontinence. The remaining one-third show no recovery at all, remaining
wheelchair-bound or bedridden with marked dependence on others for basic
functions of daily living.
http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyeli
tis.htm
 
17. Four classic features of transverse myelitis emerge: (1) weakness of the
legs
and arms, (2) pain, (3) sensory alteration, and (4) bowel and bladder
dysfunction.
http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyeli
tis.htm
 
18. Pain is the primary presenting symptom of transverse myelitis in
approximately one-third to one-half of all patients. The pain may be
localized
in the lower back or may consist of sharp, shooting 

Re: [TMIC] December Birthdays

[Roger & Terese Pratt]

Thanks.  I'll be 62 on the 23rd.  Wait, what were we talking about?  Oh, well, happy birthday to all the other December kids. - Roger in Kennewick, WA
- Original Message -From: "L T CHERPESKI" To: "tmic" , "Barbara H." Sent: Friday, December 2, 2011 8:59:51 PMSubject: Re: [TMIC] December Birthdays



 
  HAPPY HAPPY BIRTHDAY TO ALL DECEMBER KIDS!

- Original Message - 
From: Barbara H. 
To: tmic 
Sent: Thursday, December 01, 2011 10:09 PM
Subject: [TMIC] December Birthdays
Happy Birthday to those born in December!Please send any additions or corrections to tmic-list@eskimo.com.12-2 Meghan (bluemeg...@hotmail.com)12/2 Ashlee Black (tracey.bl...@hnoins.com)12/3  Janice (jan...@centurytel.net)12-3 Wim from Holland (wim_from_holl...@hotmail.com)12-4 Jan Burgess (ja...@rogers.com)12-7 Patti in Wisconsin (patticoo...@wi.rr.com)(wpcoo...@gmail.com)12-8 Lori Malloy (jorlcummi...@earthlink.net)12-15  Alton Ryder(a-ry...@comcast.net)12-18 Rod Jenke (rktje...@chariot.com.au)12/23 Roger Pratt (r.c.pr...@frontier.com)12-25 Gilly (mingalettegt@activ8.net.au)12/31 Janet (j.d...@shaw.ca)

Re: [TMIC] CBS

[Roger & Terese Pratt]

John, you are sure right about no answers for fixing nerve damage (other than, 
hopefully you'll get used to it). - Roger 


- Original Message - 
From: "john snodgrass"  
To: "Jeron Rampersad" , "r c pratt" 
 
Cc: tmic-list@eskimo.com, xbeecla...@gmail.com, skle...@cox.net 
Sent: Monday, October 31, 2011 5:49:11 PM 
Subject: Re: [TMIC] CBS 



i know what you mean J. 
i went to a neurologist once and sat there for over 2 hours and was before him 
less than 1 minute literally. 
250.00 for that visit too! 


ya got good ones and then ya have the others. 


and according to reports Roger, they really have no good answers for fixing 
nerve damage. 




From: Jeron Rampersad  
To: r.c.pr...@frontier.com; jcs...@yahoo.com 
Cc: tmic-list@eskimo.com; xbeecla...@gmail.com; skle...@cox.net 
Sent: Monday, October 31, 2011 7:01 PM 
Subject: RE: [TMIC] CBS 




funny thing is, the doctors who have a clue just doesn't care. sometimes I 
wonder if they are in the medical field to help patients or just to call 
themselves "doctors". That sounds badbut which of us hasn't been through 
crap with our doctors? 
Jeron 



Date: Mon, 31 Oct 2011 22:51:40 + 
From: r.c.pr...@frontier.com 
To: jcs...@yahoo.com 
CC: tmic-list@eskimo.com; xbeecla...@gmail.com; skle...@cox.net 
Subject: Re: [TMIC] CBS 


Sometimes I think that doctors don't have a clue! - Roger in Kennewick, WA 

- Original Message - 
From: "john snodgrass"  
To: "Elizabeth Clark" , "Susan Kleinz"  
Cc: tmic-list@eskimo.com 
Sent: Monday, October 31, 2011 2:33:40 PM 
Subject: Re: [TMIC] CBS 




I dont mean to sound pouty, perhaps I am the only one but i doubt it. the  
wherewithal  for therapy of different sorts i have not. 


but if they come up with something that makes enough difference that would put 
me back to work,,I would surely start a "me" foundation and find the means for 
it. 


jeepers if I could find a way to stop the buzzing from the middle of my spine 
down to my feet I would gladly find the means. 


so you folks that have the means,,,by all means keep tryng,searching,looking, 
we all need answers.  




From: Elizabeth Clark  
To: 'Susan Kleinz'  
Cc: tmic-list@eskimo.com 
Sent: Monday, October 31, 2011 3:37 PM 
Subject: RE: [TMIC] CBS 





Hi Susan, 

Sorry we have to meet under these circumstances – I am 58, married with 2 
children (20 & 22 who still live at home). I was dx’d with TM in April of 2006, 
spent a month in a re-hab facility, and ~two years in and out of physical & 
occupational therapy. Then in 2008 & 2009, I had two surgeries on my right 
wrist/arm to improve my hand function. 

Early this year I started wearing a leg brace (when I’m out walking a lot – 
grocery or mall shopping, etc.). After seeing a podiatrist for an unrelated 
issue, he became interested in my ‘condition’ and other problems I have as a 
result of TM – weak left leg (especially the knee), pronated arch/ankle and 
drop-foot. He recommended a new, light-weight carbon-fibre brace (made by 
Trulife in the U.K. 
http://trulife.com/all-products/orthotics/ankle-foot-orthoses/carbon-fibre-afo/matrix
 ) for my leg that has worked very well. It gives me the stability I need 
without being too heavy. I don’t wear it around the house, but when I go out, 
it helps tremendously. 

I looked up Brown-Sequard Syndrome. The symptoms of it read very much like TM 
so I’m curious… you said you have probable MS, but were dx’d with TM this year. 
Is that a correction to the initial BSS diagnosis of 20 years ago or in 
addition to it? 

And the Cranial Sacral Therapy… I’m very interested in it. I had many years of 
chiropractic treatments during my teens & 20’s due to severe headaches and 
backaches caused by my Scoliosis, but finally stopped going because I had my 
spine fused (and partially because of the cost). Since then, I’ve  considered 
going back, but the thought of someone else touching and manipulating my body 
just creeps me out… I have extreme sensitivity to synthetic fabrics which make 
my skin feel like it’s crawling and being hugged by others can sometimes be 
painful. I tried acupuncture a couple years ago, but didn’t see (or feel) any 
improvement in my condition. You mention Cranial Sacral Therapy helped you more 
than anything else. In what way – other than the obvious feeling of well-being 
– did it help you? With pain or with function? Also, do you use pain meds? If 
so, what do you use and in what dosage? 

Sorry if I sound nosy, but I’m always interested in alternative therapies. 
Since we all seem to react differently, you never know what might work for you. 

Betty 
(in Northern California )     





From: Susan Kleinz [mailto:skle...@cox.net] 
Sent: Monday, October 31, 2011 9:02 AM 
To: Elizabeth Clark 
Cc: kimharrison...@comcast.net; tmic-list@eskimo.com 
Subject: Re: [TMIC] CBS 

As "newbe" to this website, I'm Susan Kleinz 



57, married, 3 children,  

diagnosed 20 years ago with Brown Sequard Syndrome, probable MS after becomi

Re: [TMIC] CBS

[Roger & Terese Pratt]

Sometimes I think that doctors don't have a clue! - Roger in Kennewick, WA 


- Original Message - 
From: "john snodgrass"  
To: "Elizabeth Clark" , "Susan Kleinz"  
Cc: tmic-list@eskimo.com 
Sent: Monday, October 31, 2011 2:33:40 PM 
Subject: Re: [TMIC] CBS 



I dont mean to sound pouty, perhaps I am the only one but i doubt it. the  
wherewithal  for therapy of different sorts i have not. 


but if they come up with something that makes enough difference that would put 
me back to work,,I would surely start a "me" foundation and find the means for 
it. 


jeepers if I could find a way to stop the buzzing from the middle of my spine 
down to my feet I would gladly find the means. 


so you folks that have the means,,,by all means keep tryng,searching,looking, 
we all need answers.  




From: Elizabeth Clark  
To: 'Susan Kleinz'  
Cc: tmic-list@eskimo.com 
Sent: Monday, October 31, 2011 3:37 PM 
Subject: RE: [TMIC] CBS 





Hi Susan, 

Sorry we have to meet under these circumstances – I am 58, married with 2 
children (20 & 22 who still live at home). I was dx’d with TM in April of 2006, 
spent a month in a re-hab facility, and ~two years in and out of physical & 
occupational therapy. Then in 2008 & 2009, I had two surgeries on my right 
wrist/arm to improve my hand function. 

Early this year I started wearing a leg brace (when I’m out walking a lot – 
grocery or mall shopping, etc.). After seeing a podiatrist for an unrelated 
issue, he became interested in my ‘condition’ and other problems I have as a 
result of TM – weak left leg (especially the knee), pronated arch/ankle and 
drop-foot. He recommended a new, light-weight carbon-fibre brace (made by 
Trulife in the U.K. 
http://trulife.com/all-products/orthotics/ankle-foot-orthoses/carbon-fibre-afo/matrix
 ) for my leg that has worked very well. It gives me the stability I need 
without being too heavy. I don’t wear it around the house, but when I go out, 
it helps tremendously. 

I looked up Brown-Sequard Syndrome. The symptoms of it read very much like TM 
so I’m curious… you said you have probable MS, but were dx’d with TM this year. 
Is that a correction to the initial BSS diagnosis of 20 years ago or in 
addition to it? 

And the Cranial Sacral Therapy… I’m very interested in it. I had many years of 
chiropractic treatments during my teens & 20’s due to severe headaches and 
backaches caused by my Scoliosis, but finally stopped going because I had my 
spine fused (and partially because of the cost). Since then, I’ve  considered 
going back, but the thought of someone else touching and manipulating my body 
just creeps me out… I have extreme sensitivity to synthetic fabrics which make 
my skin feel like it’s crawling and being hugged by others can sometimes be 
painful. I tried acupuncture a couple years ago, but didn’t see (or feel) any 
improvement in my condition. You mention Cranial Sacral Therapy helped you more 
than anything else. In what way – other than the obvious feeling of well-being 
– did it help you? With pain or with function? Also, do you use pain meds? If 
so, what do you use and in what dosage? 

Sorry if I sound nosy, but I’m always interested in alternative therapies. 
Since we all seem to react differently, you never know what might work for you. 

Betty 
(in Northern California )     





From: Susan Kleinz [mailto:skle...@cox.net] 
Sent: Monday, October 31, 2011 9:02 AM 
To: Elizabeth Clark 
Cc: kimharrison...@comcast.net; tmic-list@eskimo.com 
Subject: Re: [TMIC] CBS 

As "newbe" to this website, I'm Susan Kleinz 



57, married, 3 children,  

diagnosed 20 years ago with Brown Sequard Syndrome, probable MS after becoming 
paralyzed on left side. 



diagnosed Feb. of this year with Transverse Myeliltis. - can walk with a brace 
on left leg. 



thank you for all these wonderful websites! 



my neurologist at Barrows Neurological Clinics in Phoenix AZ says - no flu or 
shingles shots. 

I've never had either. 



Tried 10 sessions of acupuncture... no clue if it helped. 



Many sessions of Cranial Sacral Therapy by RCST certified therapist - 

phenomenal results - helped more than anything I have tried. 



B 12 shots twice a week help also. 



Susan  

Phoenix , AZ 




On Oct 28, 2011, at 7:32 PM, Elizabeth Clark wrote: 





Wasn’t that a GREAT news bite? Cody Unser is an amazing girl (daughter of race 
car driver, Al Unser, Jr.) and has several websites dedicated to the fight 
against spinal cord injuries – and particularly TM – to help educate others 
about our dreaded condition. Check out the following: 



http://www.deepthrottle.com/Essays/cody_unser.shtml 



http://cufsf.org/ 



http://restorative-therapies.com/codyunser 



http://www.longislandpress.com/2009/08/08/cody-unser-new-documentary-candid-take-on-paralysis/
 



http://www.hopkinsmedicine.org/news/media/releases/film_chronicle_of_cody_unsers_9_year_struggle_with_paralyzing_transverse_myelitis_premieres_june_2
 





Betty 

(in   Nort

Re: [TMIC] shingles vaccine

[Roger & Terese Pratt]

You are not the only one with a weak mind. - Roger in Kennewick, WA 


- Original Message - 
From: "john snodgrass"  
To: "PAMELA S" , pjv1...@chartermi.net, "TMC Group" 
 
Sent: Thursday, October 20, 2011 3:14:38 AM 
Subject: Re: [TMIC] shingles vaccine 



I have a weak mind, I hope all this information doesnt cause me to have  
shingles !!  ;) winking    




From: PAMELA S  
To: pjv1...@chartermi.net; TMC Group  
Sent: Thursday, October 20, 2011 1:37 AM 
Subject: RE: [TMIC] shingles vaccine 




You know...I'm not going to get this shot.  But, shingles is what led to my 
mothers cardiomyapathy and congestive heart failure. 




Date: Wed, 19 Oct 2011 10:35:34 -0400 
From: pjv1...@chartermi.net 
To: tmic-list@eskimo.com 
Subject: [TMIC] shingles vaccine 


Our local newspaper has a medical column in the Sunday edition by Dr. Anthony 
Komaroff. 
www.ask doctor k.com   Sunday had a column titled "shingles vaccine is a good 
idea for adults over 60".  A healthy 65 year old woman asked - what is shingles 
and should I get the shingles vaccine.  The doctor explained shingles and the 
vaccine.  Here is a portion of the article. 

"Getting the vaccine does not gurantee that you will noy get shingles.  But it 
does reduce your chances by 50 percent or more.  And it does an even better job 
of reducing your risk of postherpetic neuralgia. 

I've had patients worry that the vaccine itself could give them shingles.  
That's because the shingles vaccine is made with a weakened - not dead - form 
of the virus.  And a tiny percentage of people do get either a shingles or 
chicken pox - like rash within a month or so of getting the vaccine. 

You may wonder if the risks associated with the shingles vaccine, though 
minimal, outweigh its benefits.  And if we were only talking about shingles, 
you might be right.  It's not pleasant, but most people get through shingles 
just fine. 

Postherpetic neuralgia is another story.  It can last for months, even years, 
and be debilitating.  The shingles vaccine can cut the risk of that happening 
by two thirds.  And I'd say that tips the balance in favor getting the 
vaccine.  I've voted with my feet.  I got the vaccine, because I've seen too 
many of my patients suffer from postherpetic neuralgia.  Chronic pain can 
disrupt a person's life" 

(end of article) 

Jim, 
I think this is a question for a neurologist.  Unfortunately, I haven't seen 
mine in three years so I cannot ask for you.  I think it would be good of all 
our Tmers who are seeing a neuro to call and ask if the neuro votes yes or no 
for the vaccine and post the results for us. 

- 

Regarding the flu shot: 

I did not have a flu shot proir to my TM that was later lableled idiopathic - 
undetermined cause.  I was also asked dozens of times during my hospitalization 
and rehab if I had had the flu shot thus determining that all medical personal 
thought the shot causes TM.  Not so.  Medical personnel asked if we had had the 
flu shot because they know the flu shot can cause various reactions and it is 
one of the many questions they ask a patient.  
The neuro who diagnosed me with TM asked if I had the flu shot during his first 
observation of me.  I saw him for five years post TM and learned that he, his 
wife, and children received the flu shot annually.  
I asked my PCP in September why he didn't ask me if I wanted a flu shot.  He 
said, "Do you?"  I questioned if he takes one and he said he did not because he 
is not prone to getting the flu and he will not push them on his patients.   
That was the best answer I've received yet.  I am not getting the flu shot. 

--- 
Patti - Michigan 

Re: [TMIC] OFF TOPIC;when in doubt

[Roger & Terese Pratt]

In my case, add soy ice cream. - Roger in Kennewick, WA 
- Original Message - 
From: rn11...@yahoo.com 
To: "tmic"  
Sent: Thursday, October 6, 2011 9:30:50 AM 
Subject: [TMIC] OFF TOPIC;when in doubt 



When in doubt eat cake. 
When you haven't a clue,add ice cream. 


    Cheryl

Re: [TMIC] gone to facebook

[Roger & Terese Pratt]

Barbara,  You were one of my first "friends" online.  I too have had TM for 
16-17 years and now I have mononeutritis multiplex, another autoimmune 
condition that effects peripheral nerves.  Knowing that I have friends out 
there, even if we don't post that often, means a great deal to me. - Roger in 
Kennewick, WA

- Original Message -
From: "Barbara H." 
To: "kevin weilacher" 
Cc: "Jeron Rampersad" , bpe...@austin.rr.com, 
cherp...@msn.com, tmic-list@eskimo.com
Sent: Tuesday, August 30, 2011 7:44:02 AM
Subject: Re: [TMIC] gone to facebook

I'm still here, too. I don't comment as much -- if someone else has already 
said what I might have said, then I don't usually chime in. The TMIC as a whole 
is not nearly as active as it was when I first joined back some...oh, 14-15 
years ago. I'm coming up on my 16th "anniversary" with TM on Sept. 1. I think 
one reason is that there is a lot of information available online now, and 
that's a good thing. When I first contracted TM, I didn't have a computer, and 
the local library had a two-page spread in one medical book, and that was it. 
TM was the first thing I searched for when we did get a computer, and this 
group was the first concrete link I found. It was a godsend, really, to have 
somewhere to post questions and compare notes. But now that so much more 
information is online, people may be getting their questions answered in their 
own research. 

And I think, too, for some of us who have been here a while, we've gotten our 
basic questions answered (even if the answer in some cases is that there is no 
known answer), so there's not as much to talk about. The main reason I stay on 
now is to be of help if anyone else has a question or just needs some empathy 
and support. 

Too, as Roger said, some have gone on to other means of communication now. I 
think the TM message board or bulletin board was pretty active for a while, and 
now Facebook is where many people go to interact online. I was in the group 
there for a while, but left -- the 50+ messages Bobby Jim referred to were just 
too much for me. When I first came online, TMIC was about the only thing I 
"did" online besides an occasional e-mail to family who had e-mail. But now 
nearly everybody has e-mail, many friends are on Facebook, I've found several 
blogs I read as well as news and entertainment -- now I have to be careful not 
to let computer time eat up too much of my day. And I don't know, but I think 
that may be the biggest reason some folks aren't as active. 

When I send out birthday greetings, if an e-mail bounces back to me, I'll make 
a note of it so I don't post that non-working e-mail again next time, but I 
don't delete the name in case they come back. It is sad every month to see that 
there are almost as many inactive names there as there are active now. I miss 
hearing from some of those folks and wonder how they are. 

But I truly think as long as there is a TMIC, there will be some of us here. We 
just need to wave every now and then. :-) 

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

Re: [TMIC] gone to facebook

[Roger & Terese Pratt]

Jeron, I enjoy seeing your posts on facebook, but you are right, this is the 
best place for TM conversations.  This is our TM family and I find it a great 
support. - Roger in Kennewick, WA

- Original Message -
From: "Jeron Rampersad" 
To: bpe...@austin.rr.com, cherp...@msn.com, tmic-list@eskimo.com
Sent: Tuesday, August 30, 2011 4:51:37 AM
Subject: RE: [TMIC] gone to facebook



Hey guys, 
I too am on facebook, but to me this seems more appropriate. I get honest and 
open discussions from you guys and that's something I need to have. On facebook 
your privacy is not kept and sometimes things I'll say on here aren't things 
that i would share naturally with family or friends that don't understand TM 
and the life that I am forced to endure. Also, with my current situation, going 
through a messy divorce and traveling by myself for the last few months, I'd 
like to be as discreet about my life as possible. I can only find solace here 
and you guys give more value to my life than the people I'd always pray would 
understand instead of thinking of me as a burden. So, I'm always going to be 
right here.where I found the most beautiful bunch of people on the planet. 
Jeron, from Planet Earth! 


Date: Tue, 30 Aug 2011 04:03:18 -0500 
From: bpe...@austin.rr.com 
To: cherp...@msn.com; tmic-list@eskimo.com 
Subject: Re: [TMIC] gone to facebook 

Hi Linda et all, 
  I'm still here with ya'll, but I do have the Facebook along with this.  And I 
wouldn't dream of leaving this list either.  This is where it all began, and 
it's like a warm blanket.  I don't post much as it's always the same, day after 
day; nothing to report. But that has a good side I guess lol.  Take care 
and God Bless! 
Peace, 
Bernie in burning Texas 

Re: [TMIC] Definition

[Roger & Terese Pratt]

You are right, the key is to keep it to "sometimes" - Roger

- Original Message -
From: "john snodgrass" 
To: "Elizabeth Clark" , "Roger & Terese Pratt" 

Cc: "tmic-list" 
Sent: Wednesday, August 17, 2011 1:02:21 PM
Subject: Re: [TMIC] Definition

i think one of the key parts is this 


" This is how I feel some times " 


i figure a lot of us that have the pain or the lack of mobility feel that way " 
sometimes " 

--- On Wed, 8/17/11, Roger & Terese Pratt  wrote: 



From: Roger & Terese Pratt  
Subject: Re: [TMIC] Definition 
To: "Elizabeth Clark"  
Cc: "tmic-list"  
Date: Wednesday, August 17, 2011, 9:56 AM 


Thanks, pushing on! - Roger in Kennewick, WA 

----- Original Message - 
From: "Elizabeth Clark" < xbeecla...@gmail.com > 
To: "Roger & Terese Pratt" < r.c.pr...@frontier.com >, "tmic-list" < 
tmic-list@eskimo.com > 
Sent: Tuesday, August 16, 2011 2:19:30 PM 
Subject: RE: [TMIC] Definition 

Roger, 

It all depends on your perspective... how you view yourself - whether as 
'disabled' or an 'invalid'. Per your quote by Nietzsche, an invalid is 'to 
vegetate... after the meaning of life... has been lost'. Have you given up 
on life? To be disabled and, temporarily at times, pine for what has been 
lost, is perfectly normal. Even non-disabled folks do it when life hits a 
snag. But that IS life. It's full of snags and it allows you to indulge 
yourself for a moment, but then demands you push on. If we didn't, our 
society, our very essence, would have ended long ago. 

Betty 
(in Northern California) 

-Original Message- 
From: Roger & Terese Pratt [mailto: r.c.pr...@frontier.com ] 
Sent: Tuesday, August 16, 2011 1:15 PM 
To: tmic-list 
Subject: [TMIC] Definition 

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] Definition

[Roger & Terese Pratt]

Right on!!! - Roger in Kennewick, WA

- Original Message -
From: "john snodgrass" 
To: "pat cooley" , "Janice Nichols" 
, "kevin weilacher" 
Cc: "Roger & Terese Pratt" , "tmic-list" 

Sent: Wednesday, August 17, 2011 9:20:45 AM
Subject: Re: [TMIC] Definition

seams like i seen this is obama-care? 


then again what if i were the farmer from long ago. once i am not able to take 
care and if i have no sons or sons-n-lawsi just wait my turn to die. 


we are a spoiled bunch but i am s thankful for the spoil! 


then again i paid for years into social security so i am just collecting from 
what should be mine,reckon im not a taker after all. 


but wait! 
i have a food stamp card! 








thanks for the food stamp card! 





--- On Wed, 8/17/11, kevin weilacher  wrote: 



From: kevin weilacher  
Subject: Re: [TMIC] Definition 
To: "pat cooley" , "Janice Nichols" 
 
Cc: "Roger & Terese Pratt" , "tmic-list" 
 
Date: Wednesday, August 17, 2011, 11:17 AM 




The problem that I see with what Nietzsche said, is that there are many people 
that are not "invalids" as I am assuming in his definitionas people that 
are disabled 
That are as much as or even more of a drain on society.and use it to their 
advantage.perhaps in different ways than being dependent on a physician or 
medicine, but a drain on society nonetheless...(our prison system for oneor 
those that work the system in regards to welfare) 

I see his view as being totally ridiculous 


Kevin 
N.E. Ohio (Canton) 





From: pat cooley  
To: Janice Nichols  
Cc: Roger & Terese Pratt ; tmic-list 
 
Sent: Wednesday, August 17, 2011 10:48 AM 
Subject: Re: [TMIC] Definition 



I second that, Janice. 
  
Patti 


On Wed, Aug 17, 2011 at 9:44 AM, Janice Nichols < jan...@centurytel.net > 
wrote: 


Nietzche is an ___hole!    Sorry if I offended anyone, but I couldn't 
believeI  I just read such a statement.       Who of us earthlings can 
determine whose life is being invalid/not valid?    Who makes that 
decision  -  only healthy people?        What a jerk!! 
Janice 



-Original Message- From: Roger & Terese Pratt 
Sent: Tuesday, August 16, 2011 3:14 PM 

To: tmic-list 
Subject: [TMIC] Definition 




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] Definition

[Roger & Terese Pratt]

Thanks, pushing on! - Roger in Kennewick, WA

- Original Message -
From: "Elizabeth Clark" 
To: "Roger & Terese Pratt" , "tmic-list" 

Sent: Tuesday, August 16, 2011 2:19:30 PM
Subject: RE: [TMIC] Definition

Roger,

It all depends on your perspective... how you view yourself - whether as
'disabled' or an 'invalid'. Per your quote by Nietzsche, an invalid is 'to
vegetate... after the meaning of life... has been lost'. Have you given up
on life? To be disabled and, temporarily at times, pine for what has been
lost, is perfectly normal. Even non-disabled folks do it when life hits a
snag. But that IS life. It's full of snags and it allows you to indulge
yourself for a moment, but then demands you push on. If we didn't, our
society, our very essence, would have ended long ago. 

Betty
(in Northern California)

-Original Message-
From: Roger & Terese Pratt [mailto:r.c.pr...@frontier.com] 
Sent: Tuesday, August 16, 2011 1:15 PM
To: tmic-list
Subject: [TMIC] Definition

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] Definition

[Roger & Terese Pratt]

Guess I better just go with God.  Thanks Dalton

- Original Message -
From: "Dalton Garis" 
To: "Roger & Terese Pratt" , "tmic-list" 

Sent: Tuesday, August 16, 2011 8:12:55 PM
Subject: Re: [TMIC] Definition




"God is dead."  - Nietzsche 



"Nietzsche is dead."  - God 

Dalton 


From: Roger & Terese Pratt < r.c.pr...@frontier.com > 
Date: Tue, 16 Aug 2011 20:14:39 + (UTC) 
To: tmic-list < tmic-list@eskimo.com > 
Subject: [TMIC] Definition 
Resent-From: < tmic-list@eskimo.com > 
Resent-Date: Tue, 16 Aug 2011 13:16:30 -0700 





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 

[TMIC] Definition

[Roger & Terese Pratt]

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] Not Getting the Help I need

[Roger & Terese Pratt]

After a very enjoyable week spent in Alpine, UT with my daughter, son-in-law, 
and granddaughter I went to my neurologist.  He said that he thought I was 
progressing really well, was walking better, and complaining less about pain.  
Less than a week later, everything seemed to go to hell in a hand basket.  The 
nerve, muscle, and joint pain and fatigue went up exponentially.  I started 
having terrible headaches, dizziness, and just general trouble functioning.  I 
went to my regular doctor who did blood tests and said I didn’t have any 
infections or anything that would explain my symptoms.  The worst part is that 
I am now filled with terrible rage, which is totally opposite of my regular 
personality and view of life.  If this doesn’t kill me, I’m not sure what will. 
 I just hope and pray that I can come out of it.  I’m working hard not to let 
it affect my relationships with my family and friends, and I pray to God that 
it will leave soon.  A friend explained that the anger is the body’s way of 
trying to get energy when everything is causing lack of energy due to pain, 
fatigue, etc.  At least I feel a little better now. - Roger in Kennewick, WA

- Original Message -
From: "Akua" 
To: tmic-list@eskimo.com
Sent: Monday, August 8, 2011 4:31:50 PM
Subject: [TMIC] Not Getting the Help I need


The wonderful physiatrist who has ordered tests that my GP probably should have 
but didn't bother to, 
heard my concern about my weight gain, and reflected on my anemia. 


Knowing that I don't eat the standard schlock ( no land animals, no sugar, no 
white bread, for 40 years) and that 
I'm lactose intolerant ( no pizza, cheese, ice cream, whipped cream, no cow's 
milk for 16 years) and caffeine sensitive (2 years), he referred me to a 
nutritionist. 


The day before my appointment, I had a fit-- they were going to grade my street 
--- whacky in that it is one of the few pothole free stretches in town. I was 
worried about how i would get on the  school bus that would take me to the 
nutritionist. 


It was challenging, and all my worst fears were realized but fortunately i 
had a kind man as busdriver who guided my wheel chair off the sidewalk and into 
the street to get to the lift. 


When i got to the doctor's office --- on a hill outside of town in gang mills 
in a facility called healthworks, the receptionist asked me if i was a diabetic 
or had renal failure.. . no i said looking for wood to knock on, being 
paralyzed with its attendant problems is quite enough. 


She did something with some papers checked on my identity and asked me again if 
i were diabetic, No I said. Then she went away for about 5 minutes came back 
and told me I couldn't see the nutritionist unless i wanted to pay out of 
pocket. 
What? but i was referred. 
Medicare doesn't cover the nutritionist unless you are diabetic or have renal 
failure. 
The out of pocket cost for the consultation is $350.00. I don't have a spare 
$350.00. 


Returning home was a beautiful ride seeing again the wide summer dry river and 
the green hills bright 
in the strong sun, but as we approached my side/ back, my driveway was blocked 
by a car and so getting me off the lift and onto the sidewalk was another 
struggle. I felt again the anger and frustration that I was disallowed a 
handicapped parking sign the would guarrantee me access to either my front or 
back door, but this was just  ancient timber sparked by the day's denial. 


I recently listened to a lecture about how the US spends the most money in the 
world on healthcare, but has one of the worst outcomes/results/performances. 
" 
    *   The United States ranks 43rd in lowest infant mortality rate, 
down from 12th in 1960 and 21st in 1990.  Source: CIA Factbook (2008) 
    *   Life expectancy at birth in the US is an average of 78.14 
years, which ranks 47th in highest total life expectancy compared to other 
countries. Source: CIA Factbook (2008)" 


I wish I didn't need help, because I'm not getting any. 

-- 

Re: [TMIC] aaaaaaaaaahh!

[Roger & Terese Pratt]

It's called mononueritis multiplex, has symptoms like ALS (Lou Gerick's disease 
(sp?)), but manifests itself mostly in my left foot and my right hand.  I have 
had muscle waisting in my right hand, swelling in both feet, and lots of nerve 
pain.  Just another of life's blessings.  - Roger in Kennewick, WA

- Original Message -
From: "Bernie Pelow" 
To: "Roger & Terese Pratt" 
Sent: Sunday, July 24, 2011 9:31:32 AM
Subject: Re: [TMIC] aahh!

Is the new disorder Guillame Barre'? 
Bernie in Texas @ 110 degrees outside! 

Re: [TMIC] aaaaaaaaaahh!

[Roger & Terese Pratt]

Jeron,  It's easy to get caught into our own personal problems.  I have 
contracted a 2nd autoimmune desease, this one in the peripheral nerves, and 
haven't really gotten a handle on the pain yet.  Whine, whine.  Now I feel a 
little better. - Roger, in Kennewick, WA

- Original Message -
From: "Jeron Rampersad" 
To: tmic-list@eskimo.com
Sent: Friday, July 22, 2011 8:56:12 AM
Subject: [TMIC] aahh!


It's so rare that it's quiet on here. I get sucked in by my own personal 
problems and never get the time to write because of that. I truly hope no one 
else has the same reason, because then no one would write anymore. This is all 
I have now...so.aahh! I screamed! did y'all hear me? 
Jeron 

Re: [TMIC] Bladder/Spasms

[Roger & Terese Pratt]

I wish I couldn't empathise. - Roger in Kennewick, WA

- Original Message -
From: "john snodgrass" 
To: "transverse myelitis" 
Sent: Monday, May 23, 2011 7:13:45 AM
Subject: RE: [TMIC] Bladder/Spasms

sad part about my nerves coming alive is that it turned numbness into pain. 
pain that i cannot seam to manage. 

--- On Mon, 5/23/11, Patricia Cooley  wrote: 



From: Patricia Cooley  
Subject: RE: [TMIC] Bladder/Spasms 
To: "'Janice Nichols'" , "'TMIC-LIST'" 
 
Date: Monday, May 23, 2011, 9:53 AM 





Janice I don’t have leg spasms but if I am sitting or it has been a while since 
I made a trip to the bathroom, I get a pain in the area just above the pubic 
bone.  That tells me it has been sometime since I went potty.  The pain also 
wakes me at night so again I go.  I have noticed that when I am going the pain 
slowly goes away, and by the time I have emptied my bladder the pain is gone. 
That has been happening for about the past year, and my urologist is aware of 
it and is not concerned.  I believe that maybe some nerves are now coming 
alive, and least I hope so. 

  

Patti 

  



From: Janice Nichols [mailto:jan...@centurytel.net] 
Sent: Sunday, May 22, 2011 5:21 PM 
To: TMIC-LIST 
Subject: [TMIC] Bladder/Spasms 

  




Got a quick question  -  


  


Have any of you noticed that when you are sitting for a while and your legs 
start spasming, if you go to the bathroom, it settles down?   I don’t know 


if it is my imagination or if that is something to this. 


  


Haven’t heard from anyone for a while – everything okay? 


  


Take care, 


  


Janice

Re: [TMIC] They're baaack

[Roger & Terese Pratt]

It all depends on the weather.  Weather I hurt or weather I don't.  (But I 
usually do.) - Roger in Kennewick, WA

- Original Message -
From: "john snodgrass" 
To: "James Berg" , "Dalton Garis" 
Cc: "transverse myelitis" , tmic-digest-requ...@eskimo.com
Sent: Wednesday, April 27, 2011 9:47:03 AM
Subject: Re: [TMIC] They're baaack

hate to hear that Dalton. 


I'm having an extremely bad day myself 


wondered if it was the weatherbut your way over there? 


hows the weather? 

--- On Wed, 4/27/11, Dalton Garis  wrote: 



From: Dalton Garis  
Subject: Re: [TMIC] They're baaack 
To: "James Berg" , "john snodgrass"  
Cc: "transverse myelitis" , 
"tmic-digest-requ...@eskimo.com"  
Date: Wednesday, April 27, 2011, 12:40 PM 





Well, the cramping-spasticity-contractions—whatever-yoy-wanna-call-them, came 
back this morning.  


The first sign was that I knocked over a perfectly good, and totally full, cup 
of coffee all over the kitchen table, including on my meds.  By the time I got 
to work my limb coordination was diminishing. 


But I got through the lecture—barely!  Then informed my reassuring, but 
write-it-all-down-for-future-reference boss that I was heading home early. 


OK now, just sore and embarrassed.  It is hard to be better than normal as 
worse than normal as both situations land me in trouble. 


Dalton 


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



From: James Berg < molokai...@gmail.com > 
Date: Tue, 26 Apr 2011 09:51:27 -1000 
To: john snodgrass < jcs...@yahoo.com > 
Cc: transverse myelitis < tmic-list@eskimo.com > 
Subject: Re: [TMIC] revisiting an old issue 
Resent-From: < tmic-list@eskimo.com > 
Resent-Date: Tue, 26 Apr 2011 12:52:04 -0700 


thanks for the input 


On Tue, Apr 26, 2011 at 9:08 AM, john snodgrass < jcs...@yahoo.com > wrote: 


ativan along with hydrocodone use to ease the banding but that does not have 
much effect anymore for me 

--- On Tue, 4/26/11, James Berg < molokai...@gmail.com > wrote: 



From: James Berg < molokai...@gmail.com > 
Subject: Re: [TMIC] revisiting an old issue 
To: "john snodgrass" < jcs...@yahoo.com > 
Cc: "transverse myelitis" < tmic-list@eskimo.com > 
Date: Tuesday, April 26, 2011, 2:28 PM 






I am having a bad day--the thrumming is at its worst and the banding has gotten 
wider and tighter--to the point I couldn't eat dinner or breakfast this 
morning.  Baclofen does nothing.  It took four glasses of red wine and two 
alergy pills to get me to sleep.  Being in the chair now is making the banding 
pain worse. 
  
any suggestions? 


On Tue, Apr 26, 2011 at 1:11 AM, john snodgrass < jcs...@yahoo.com > wrote: 


I remember hearing the concern of thrumming in the legs. 


You know,,like the sound that a power transformer makes except it's a feeling,a 
buzzing or even sometimes like energy going up and down your leg or legs. 


I gert this a lot and when it is real bad it is from the top of my head to the 
bottom of my feet. 


sometimes it even feels like something poking at the bottom of my feet from the 
inside trying to get out. 


perhaps i could harness it and drive a car with it! 


I am taking the maximum dosage of baclofen and neurontin and was wondering if 
anyone ever ran across something to either slow this part down or even stop it. 


sometimes it will last all day and can go from irritating to depressing. 


most of the time when this does stop that's when the burning begins. 


this on top of the wast banding and pain can drive me to thinking thoughts that 
are not normal for me. 


 thoughts like,,perhaps i should find some marijuana and smoke it or perhaps i 
should drink enough to pass out or maybe i should punch someone and they will 
knock me out! 


my Doc's know about it but have no answer. 


losing insurance on may 5th. 

Re: [TMIC] enough!

[Roger & Terese Pratt]

Just wait until you get the gremlin with the stun gun that keeps shocking your 
feet.  One day I'm going to get him in my sites and blow him away.

- Roger in kennewick, WA

- Original Message -
From: "john snodgrass" 
To: "transverse myelitis" 
Sent: Wednesday, April 13, 2011 7:27:38 AM
Subject: RE: [TMIC] enough!

one of the most odd and confusing feelings is when it feels like theres energy 
running up and down deep inside your legs and you can feel it change directions 
when it hits the bottom of your feet. 


it is rather unnerving!  


sort of spooky! 


Frankenstein,    IT'S ALIVE IT'S ALIVE! 

--- On Wed, 4/13/11, Patricia Cooley  wrote: 



From: Patricia Cooley  
Subject: RE: [TMIC] enough! 
To: "'john snodgrass'"  
Date: Wednesday, April 13, 2011, 9:58 AM 





That feeling drives a person crazy.  When I woke this a.m. it felt like my 
muscles in the bad (right) leg were twitching like crazy.  Fortunately, it was 
time to get up and as soon as I started moving around it stopped.  TM sucks!! 

  


From: john snodgrass [mailto:jcs...@yahoo.com] 
Sent: Tuesday, April 12, 2011 2:43 PM 
To: transverse myelitis 
Subject: [TMIC] enough! 

  

my legs are creping me out today ,one feels like it has spider webs on it and 
the other feels like bugs are crawling on it! 


  


TM,gotta love it,, 


  


  


  


NOT! 

  

Re: [TMIC] disbaled social security benefits

[Roger & Terese Pratt]

Yes they are taxed, but not as much as regular income.  I am on SSD.

- Roger Pratt in Kennewick, WA

- Original Message -
From: "john snodgrass" 
To: "transverse myelitis" 
Sent: Friday, April 8, 2011 2:07:57 PM
Subject: [TMIC] disbaled social security benefits


to anyone receiving disabled social security monies. 
  
I received a letter today stating that I will receive my first check May 11th. 
  
signed up for it on Nov 5th. 
  
wont get any retro pay. 
  
is this money taxed? 

Re: [TMIC] Hello, from Jude

[Roger & Terese Pratt]

Jude, I too am sorry that you've been back in the hospital, but it is good to 
see your post on the list.  I too have had a difficult year. After 16 years 
with Transverse Myelitis I developed a new autoimmune disease, Mononeuritis 
Multiplex that attacks peripheral blood vessels and nerves. I've had about six 
months of IV steroids once a week and am taking an immune suppressant, 
Azathioprine.  My wife was also diagnosed with Parkinsons in December.  What 
doesn't kill us just makes us stronger (I guess).  Hope things go well for you 
now.

- Roger Pratt in Kennewick, WA

- Original Message -
From: "Patricia Cooley" 
To: "Jude Hoops" , tmic-list@eskimo.com
Sent: Monday, April 4, 2011 7:14:48 AM
Subject: RE: [TMIC] Hello, from Jude




Jude I am sorry you had been in the hospital with another UTI infection, but it 
is so good to hear from you.  I hope all is well now for a long, long time.  In 
early February, I too was in the hospital.  It started with a BAD ear infection 
and went into a bad UTI.  In fact, my doctor said she had never seen such a 
severe UTI.  I understand that when you are older they can be very, very 
serious.  I lost all the strength and mobility I had achieved after getting TM, 
so I spent another week in rehab and then 5 weeks with PT at home.  You take 
care and I hope to see more posts from you in the future, even just to say 
“III” 

  

Patti - Wisconsin 

  



From: Jude Hoops [mailto:heyjude48...@aol.com] 
Sent: Monday, April 04, 2011 3:26 AM 
To: tmic-list@eskimo.com 
Subject: [TMIC] Hello, from Jude 

  




Hey friends, 


  


Home from the hospital again, treated for another bad UTI and blood infection.  
I am feeling well tonight and cannot sleep, so here I am saying “Hi” to 
everyone out there who is checking in to see what’s going on.  I hope all has 
been well with everyone and hope to hear from some of you soon. 


  


Love ya, 


Jude

[TMIC] Re: Health

[Roger & Terese Pratt]

I've had TM for about 16 years (lesion found at C-2 through C-4).  Last 
February I started having new symptoms, swollen feet, fingers going numb, more 
pain in my hands, feet and legs.  My regular neuro did lots of MRIs thinking it 
was TM recurring.  She finally sent me to a neuro that specializes in 
peripheral nerve diseases and he diagnosed me with Mononeuritis Multiplex, 
which is a rare autoimmune disease that attacks peripheral nerves and causes 
muscle wasting.  I've been on weekly steroid IVs for about six months (had the 
last infusion on my 61st birthday)and take Imuran which is an immune system 
suppressant. 

I follow all the TM posts, but rarely join in.  Some of the old-timers remember 
me.  Oh, by the way, I have a new e-mail address, r.c.pr...@frontier.com.  
Thanks for writing to me.

Roger, Kennewick, WA

- Original Message -
From: "Janice Nichols" 
To: "Roger Pratt" 
Sent: Saturday, January 1, 2011 11:09:08 AM
Subject: Health




Roger, 
I don’t remember you posting here before.How long have you had the first 
autoimmune disease and what was it?Also, what was the 2nd one?What a 
tough 
blow to the body. I am really sorry. What problems did it leave for 
you?I am not nosy, just interested and concerned that one of us got hit 
twice. 
I have had TM for 4 years.I can walk, not gracefully, with my cane.I 
use a wheelchair for distance.  
  
Hope to hear from you, 
Janice

Re: [TMIC] O.T. Happy New Year

[Roger & Terese Pratt]

I second this message, and just hope none of you get a second autoimmune 
disease like I did this year.

Roger, Kennewick, WA

- Original Message -
From: rn11...@yahoo.com
To: tmic-list@eskimo.com
Sent: Friday, December 31, 2010 10:12:53 AM
Subject: [TMIC] O.T. Happy New Year

 HAPPY NEW YEAR TO ALL THE TMERS AND THEIR FAMILIES 
  MAY THE NEW YEAR SEE ALL YOUR WISHES COME TRUE 

 CHERYL 

Re: [TMIC] Merry Christmas & A HAPPY NEW YEAR

[Roger & Terese Pratt]

Saroj,  So good to see your name again.  All my best to you and all my TM 
friends.

Roger, Kennewick, WA

- Original Message -
From: "Saroj Kumari" 
To: "tmic-list" 
Sent: Thursday, December 23, 2010 10:13:34 PM
Subject: [TMIC] Merry Christmas & A HAPPY NEW YEAR

   Hi all my friends

 Wish you all a merry Christmas & a happy healthy & a prosperous new year

Saroj from India

Re: [TMIC] December Birthdays

[Roger & Terese Pratt]

My e-mail has changed to r.c.pr...@frontier.com

Thanks for the birthday good wishes,

Roger Pratt from Kennewick, WA

- Original Message -
From: "Barbara H." 
To: "TMIC" 
Sent: Thursday, December 2, 2010 5:11:04 AM
Subject: [TMIC] December Birthdays

Happy Birthday to the December kids! 

Please send any additions or corrections to tmic-list@eskimo.com 

12-2 Meghan ( bluemeg...@hotmail.com ) 

12/2 Ashlee Black ( tracey.bl...@hnoins.com ) 

12/3  Janice ( jan...@centurytel.net ) 

12-3 Wim from Holland ( wim_from_holl...@hotmail.com ) 

12- 4 Jan Burgess ( ja...@rogers.com ) 

12-7 Patti in Wisconsin ( patticoole...@gmail.com ) 

12-8 Lori Malloy ( jorlcummi...@earthlink.net ) 

12-10 Shirley from UK ( shirley.up...@dsl.pipex.com ) 

12-15  Alton Ryder( a-ry...@comcast.net ) 

12-15 CarolAnn B.L. from South Carolina, USA ( ladycame...@aol.com ) 

12-18 Rod Jenke ( rktje...@chariot.com.au ) 

12/23 Roger Pratt ( r.c.pr...@verizon.net ) 

12-25 Gilly ( gilly...@y7mail.com ) 

12/31 Janet ( j.d...@shaw.ca ) 

Re: [TMIC] Medications

[Roger & Terese Pratt]

Best of luck, Dalton!

- Roger in Kennewick, WA

- Original Message -
From: "Dalton Garis" 
To: "L T CHERPESKI" , "Janice Nichols" 
, "j dunn" , tmic-list@eskimo.com, 
"Barbara Alma" 
Sent: Monday, September 13, 2010 6:08:32 AM
Subject: Re: [TMIC] Medications

I am now going to be tested for epilepsy, induced by the TM or something like 
it.  I am on epilepsy anti-seizure drugs now. 

Dalton 

Re: [TMIC] Medications

[Roger & Terese Pratt]

Hi, Roger Pratt here.  I haed "seizures" for two years before I was diagnosed 
with TM.  Once I was diagnosed, they said that they were "spasms, muscle 
tremors, results from pain, etc., etc." and that I really didn't have epilepsy, 
which was good because I had been allergic to every seizure medication they had 
given me.  Now I also have Mononeuritis multiplex (which affects peripheral 
nerves and causes nerves to die and muscle waisting) which they figured I got 
about 6 months ago.  My "spasms" have decreased and are not as violent.  I hope 
your seizures will decrease.  Just for reference here are the medications I am 
taking:

Heart Related
Tricor145mg(at breakfast)
Zetia  10 mg   (at breakfast)   
 
Fish Oil1000 mg(4Xdaily)
Transverse Myelitis Related
Amantadine100mg(1 to 2Xdaily)
Cymbalta60mg(at bedtime) 
Zanaflex4 mg(at bedtime)
Triavil (Perphenazine- Amitriptyline)4/50mg(at 
bedtime)
Tranxene7.5mg(as needed)
Darvacet100/650(at bedtime or up to 2X daily)
Mononeuritis multiplex
Prednisone infusions(1 X a week)
Imuran50mg – 200mg (daily)
Other
Iron, Multi-Vitamin, Calcium
Prevacid  30 mg(at breakfast)
Vitamin B-12 (by injection every two weeks)
Lisinopril  10 mg(at bedtime)

My best to you, 
Roger in Kennewick, WA

--- Original Message -
From: "Janice Nichols" 
To: "Dalton Garis" , "j dunn" , 
tmic-list@eskimo.com, "Barbara Alma" 
Sent: Friday, September 10, 2010 8:18:15 PM
Subject: Re: [TMIC] Medications


Not to my knowledge.But, if it works on the spasms, that is part of your 
problem taken care of. 
Did you have seizures before TM? 
Janice 




From: Dalton Garis 
Sent: Friday, September 10, 2010 12:22 PM 
To: Janice Nichols ; j.d...@shaw.ca ; tmic-list@eskimo.com ; Barbara Alma 
Subject: Re: [TMIC] Medications 

Does it work for seizures?? 

Dalton 




From: Janice Nichols < jan...@centurytel.net > 
Date: Fri, 10 Sep 2010 10:20:03 -0500 
To: Dalton Garis < malugss...@gmail.com >, < j.d...@shaw.ca >, < 
tmic-list@eskimo.com >, Barbara Alma < balmat...@aol.com > 
Subject: Re: [TMIC] Medications 

Remember you can work up to the amount you need.   If you start with the 
zomby-business, cut back and see if that will work for you.Or, just take it 
a little before bedtime.   That is what I do. 
Janice 

From: Dalton Garis < mailto:malugss...@gmail.com >   
Sent: Friday, September 10, 2010 5:31 AM 
To: Janice Nichols < mailto:jan...@centurytel.net >  ; j.d...@shaw.ca ; 
tmic-list@eskimo.com ; Barbara Alma < mailto:balmat...@aol.com >   
Subject: Re: [TMIC] Medications 

OK; 

I’ll suggest it to my neuro.  He has been steering me away from the heavy-duty 
meds because I already take 40 mg of Prozac (have for 20 years) and he is 
afraid it will zomby-ize me. 

Dalton 




From: Janice Nichols < jan...@centurytel.net > 
Date: Thu, 9 Sep 2010 22:22:34 -0500 
To: < j.d...@shaw.ca >, < tmic-list@eskimo.com >, Barbara Alma < 
balmat...@aol.com > 
Subject: Re: [TMIC] Medications 
Resent-From: < tmic-list@eskimo.com > 
Resent-Date: Thu, 9 Sep 2010 20:22:23 -0700 

There's that word again  -  spasms.I swear by baclofen.Had to change 
the number taken and the times of the day when to take them, but once that 
was figured out, I could sleep.Sorry to sound like a broken record and I 
realize that we are all different too.Sure wish it would work on you guys 
the 
way it works for me. 
Janice 

  
From: Barbara Alma < mailto:balmat...@aol.com >   
Sent: Thursday, September 09, 2010 10:16 PM 
To: j.d...@shaw.ca ; tmic-list@eskimo.com 
Subject: Re: [TMIC] Medications 

Hydrocodone: I personally do not get any relief from my nerve pain, 
burning/freezing or hyper sensitivity.  I take it for other pain, and I also 
take it to sleep occassionally.  Before anyone states that it isn't a sleep 
aid, I know it, but it allows my other aches and pains to stop hurting enough 
for me to go to sleep.  It does not work on the really bad nights when my 
nerves or spasms do not settle down though.  I may as well have not even 
bothered. 

Hugs, Barbara A in Auburn CA 


-Original Message- 
From: Janet Dunn < j.d...@shaw.ca > 
To: 'transverse myelitis' < tmic-list@eskimo.com > 
Sent: Thu, Sep 9, 2010 7:59 am 
Subject: [TMIC] Medications 

Hello to all 

I find it very interesting the number of us that are on or have taken 
hydrocodone, especially when it is “said” that opoids do not help with the pain 
of TM 

For me personally, I wouldn’t make it if I didn’t have a member or two of the 
hydrocodone family in my drug repertoire.   I take 20mg  or 40mg of lon

Re: [TMIC] Iron Defensiency

[Roger & Terese Pratt]

I seem to have a slight dificiency which my doctors can't explain.

Roger in kennewick, WA
- Original Message -
From: "Carol E" 
To: tmic-list@eskimo.com
Sent: Wednesday, September 1, 2010 7:53:33 PM
Subject: [TMIC] Iron Defensiency

Does anyone have iron deficiency as a result of the TM or the meds they are 
taking? 



Carol  in Addison, IL 

RE: [TMIC] Memory Loss

[Roger & Terese Pratt]

For me it is also the numbness and constant pain.  I'm sure the medications
don't help either.  I think my brain is on constant overload.  (Now what was
I saying?)

 

Roger, in Kennewick, WA

 

  _  

From: fr...@franksheldon.com [mailto:fr...@franksheldon.com] 
Sent: Sunday, August 29, 2010 7:42 AM
To: bobby jim; kimr1999; Rev. Craig Crossman; tmic-list@eskimo.com
Subject: Re: [TMIC] Memory Loss

 

 

Yes,

 

The memory problem is caused by many things, but mainly for me because I'm
aways in pain so my mind attends to the pain first and forgets the rest.  i
also have loss of proprioception so my mind is constantly wondering where
the parts of my body are.

 

I hope this muddies the water.

 

F

RE: [TMIC] Miracle of Miracles!

[Roger & Terese Pratt]

Craig, 

 

Following is a list of all the drugs I take:

 

Heart Related   These are because of high cholesterol and triglycerides
(sp?)

Tricor145mg   (at breakfast)

Zetia10 mg  (at breakfast)


Fish Oil 1000 mg   (4Xdaily)


 


Transverse Myelitis Related


Amantadine   100mg   (1 to 2Xdaily)
(for fatigue)

*Cymbalta  60mg (at bedtime) 

*Zanaflex4 mg  (at bedtime)

*Triavil (Perphenazine- Amitriptyline)  4/50mg
(at bedtime)  (This really helps with sleep!)

Tranxene 7.5mg(as needed) 

Darevacet   (as needed)

 

Mononeuritis multiplex

Prednisone infusions(1 X a week)

Imuran 200mg (daily)

Other

Iron, Multi-Vitamin, Calcium

Prevacid30 mg  (at breakfast)

Vitamin B-12 (by injection)


Lisinopril 10 mg(at bedtime)


 

Hope you find this helpful.

 

Roger in Kennewick, WA

 

PS.  Others I've tried that haven't worked:


Felbatol, Tegretol, Dilantin, Depakote, Trileptal (all caused rash), Savella
(caused myalgia), Lyrica (aggravated swelling in feet and ankles), Fentanyl
topical (Headache, nausea, vomiting, weird symptoms, confusion), Neurontin
(caused severe drossiness), Ultram, Zonegran, Lamictal, Keppra, 


 

  _  

From: Janice Nichols [mailto:jan...@centurytel.net] 
Sent: Thursday, August 12, 2010 8:41 PM
To: Rev. Craig Crossman; tmic-list@eskimo.com
Subject: Re: [TMIC] Miracle of Miracles!

 

AMEN!

Janice

 

 

From: Rev. Craig   Crossman 

Sent: Thursday, August 12, 2010 4:14 PM

To: tmic-list@eskimo.com 

Subject: [TMIC] Miracle of Miracles!

 

I went to the clinic today and saw my nurse practitioner. Turns out she had
taken quite  bit of time to study up on TM; something my former doctor never
bothered to do. So we were able to discuss intelligently my symptoms, my
meds, and treatment options. What a difference!

She upped my hydrocodone from 5mg to 10mg, scheduled me for PT
(including hydrotherapy) and she added Amitriptyline HCL. This should help
me sleep and also help with depression. Has anyone had any experience with
this drug? What can I expect?

God bless those who care and take the time to educate themselves
about what we face. There are not many of them, but if you find one they are
like gold.

 

Rev. Craig Crossman

First Baptist Church

615 W. Webster St.

Colby, KS 67701

W - (785)462-2867/ Cell - (785)443-5154

revcross...@gmail.com

www.firstbaptistcolby.org