[TMIC] Actiq

[Westgold]

Hi everybody -- has anyone ever tried Actiq (fentanyl) for TM pain?  If so, how 
does it work, and how much did you take?  There's a big article about it in 
Newsweek this week.

take care -- Michelle

Re: [TMIC] allodynia

[Louise Croyden]

Hi All,

I was trying to find information on the neuropathic pain we are all 
experiencing since our TM attacks.  I clump all the various problems such as 
cold/burning/numb/stiff/screaming skin (I think that covers most of it) under 
the term neuropathic pain.  That is the term the Neurologist uses to describe 
all of it. 

My neuropathic pain, including spasticity, is much worse right now but I know 
it is because of a combination of stress, doing too much, lack of sleep, too 
little physiotherapy-type exercise, too much walking, too long sitting, etc., 
etc.  I'm sure we've all experienced some of these triggers but I'm having all 
of them at the same time. 

Re: allodynia, I was reading an article at 
http://www.spineuniverse.com/displayarticle.php/article1614.html
and am copying just a couple of sentences here.  As we all know:  "neuropathic 
pain is produced by damage to, or pathological changes in the peripheral or 
central nervous systems." 

"The hallmarks of neuropathic pain are chronic allodynia and hyperalgesia. 
Allodynia is defined as pain resulting from a stimulus that ordinarily does not 
elicit a painful response (eg. light touch). Hyperalgesia is defined as an 
increased sensitivity to a normally painful stimuli".

It is quite a technical paper so I won't copy and paste anymore here but they 
do mention types of treatments that we all know about, i.e., Amitriptyline and 
Gabapentin (Neurontin).

Regards.

Louise



- Original Message - 
  From: [EMAIL PROTECTED] 
  To: [EMAIL PROTECTED] 
  Cc: tmic-list@eskimo.com 
  Sent: Sunday, May 06, 2007 10:20 PM
  Subject: [TMIC] allodynia


  I've looked up 'allodynia', but still don't really understand it.  I've never 
heard of it before, and now 3 of you have just mentioned it.  Can you give me 
an example of how it works?

  Sally

RE: [TMIC] RE: L-Carnatine

[Trudy]

Yes, I am on 300mg of lyrica a day. But it numbs my legs almost too much and
I'm having trouble figuring out the dosage. I was on Neurontin for years..
my neuro thought I should try lyrica. I was just looking for something more
"natural".. 

Thanks!

Trudy

 

 

  _  

From: Heather & Pieter [mailto:[EMAIL PROTECTED] 
Sent: Monday, May 07, 2007 5:04 PM
To: [EMAIL PROTECTED]; Trudy; [EMAIL PROTECTED];
[EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Subject: Re: [TMIC] RE: L-Carnatine

 

Have you tried Neurontin/Gabapentin or Lyrica for your pain?

 

Heather in Calgary

- Original Message - 

From: Candis   Kalley 

To: Trudy   ; [EMAIL PROTECTED] ;
[EMAIL PROTECTED] 

Cc: tmic-list@eskimo.com 

Sent: Monday, May 07, 2007 1:55 PM

Subject: [TMIC] RE: L-Carnatine

 

Trudy,

 

It is a vitamin - an amino acid - which supposely "plays a rle in making
fatty acids available for energy in muscle tissue" altho it has not been
evaluated by FDA.  It is supposely an alternative to amantadine which is
"considered to be a first-line treatment for MS & TM related fatigue".

 

I've been taking 2 500 mg caplets 2X a day of L-Carnatine.  After approx.
the 3rd day, I did have a boost of energy but for the next 3 days, I slept
anytime I sat down - sleeping anywhere from 30 minutes to 3 hours at a time.
Now again today, I feel more energetic but I'm not sure what tomorrow will
bring.

 

I will say that my muscle don't seem to hurt/ache as bad.  It is the
constant chronic fatigue that I am having great difficulty with.  I use to
be so energetic now it is a real chore to get up and just "BE" anymore.  I
am in my 17th month of TM.  I am not too happy to hear that things will
probably be worse as I get older.  

 

I've always had a high tolorance for pain but some days, I just have to sit
and cry because I hurt so bad and my meds don't seem to phase it one bit.

 

I take zanaflex (tizanidine) for the muscle spasms/contractions; Lortab
(hydroco) for pain with X-strength tylenol in between; and zoloft for
depression.  But, like I said some days it feels as if I'm just taking sugar
pills.

 

Did you get the TMA journal?  The article on Fatigue and Transverse Myelitis
on page 49 may help to explain a little more.

 

Hope this helped.

 

Candy K.

 

- Original Message - 

From: Trudy   

To: [EMAIL PROTECTED];[EMAIL PROTECTED];[EMAIL PROTECTED] 

Cc: tmic-list@eskimo.com

Sent: 5/7/2007 3:57:39 PM 

Subject: L-Carnatine

 

Candis,

I have just heard about  L-Carnatine. What is it used for?? Is it a more
"natural" drug???

Does it help with pain??

thanks

Trudy

 


  _  


From: Candis Kalley [mailto:[EMAIL PROTECTED] 
Sent: Sunday, May 06, 2007 11:33 PM
To: [EMAIL PROTECTED]; [EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Subject: [TMIC] allodynia & amantadine

 

I looked up allodynia - 

An example of touch allodynia is pain from the touch of clothing. Thermal
allodynia occurs from a draft of warm or cold air on the skin. The March 17,
1997 issue of Newsweek describes a patient who dreaded the breeze from a
ceiling fan because it felt like razors cutting his flesh

 

I have this when I wear pants or in bed with a sheet on just above my knees
anything touching there feels like a sunburn.  If a cold breeze like the air
conditioner in the car hits my left arm/hand it feels like a burning
sensation and also causes severe cramping and spasms.

 

I really didn't know the name of this but from what I read and experience it
is allodynia both touch and thermal.

 

Well I tried the in place of amantadine.  After 3 days I did feel better -
not as much muscle pain except for the spasms/cramping - but must have over
done it because the past 3 days I have done nothing but sleep and have no
desire to do anything else.  I know this could also be a sign of depression
but whatever, I'm calling the Neuro tomorrow.  This is not a life.

 

Did anyone watch "Living with Cancer" on Discovery Health?  Too bad that TM
isn't as well know as some of the other diseases.

 

 

 

- Original Message - 

From: [EMAIL PROTECTED] 

To: [EMAIL PROTECTED] 

Cc: tmic-list@eskimo.com

Sent: 5/6/2007 10:22:27 PM 

Subject: [TMIC] allodynia

 

I've looked up 'allodynia', but still don't really understand it.  I've
never heard of it before, and now 3 of you have just mentioned it.  Can you
give me an example of how it works?

Sally


  _  


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PM

[TMIC] detromethorphan

[Regina Rummel]

After  reading your intersting comments on this drug, I looked it up and can 
only find DEXTROMETHORPHAN.  
  Comments, please

Re: [TMIC] allodynia

[Balmatmic]

Hi Patti,
 
I am at 1600 mg Neurontin in the morning, and 1800 mg Neurontin mid day and  
bedtime.  That's a total of 5200/day, and that is a huge amount.  When  I 
originally went on it, I was told that 3600 was max per day, but then on the  
TMIC 
learned that there were many who took more than that.  My pain med doc  
wasn't at all concerned about increasing me to that level, but I was.
 
I generally only take 20 mg Baclofen at bedtime, but have had to start  
taking it earlier quite often recently.  I also need to take another 5-10  mg 
during the night if I took it early and am having a bad time.  Once in a  while 
I 
wonder if I needed it that night when I don't have any spasms,  and other 
nights I wonder if it's working at all when I have them  continuously.  Go 
figure, 
life is fun with TM.
 
Hugs to all, Barbara A  



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

Re: [TMIC] RE: L-Carnatine

[Heather & Pieter]

Have you tried Neurontin/Gabapentin or Lyrica for your pain?

Heather in Calgary
  - Original Message - 
  From: Candis Kalley 
  To: Trudy ; [EMAIL PROTECTED] ; [EMAIL PROTECTED] 
  Cc: tmic-list@eskimo.com 
  Sent: Monday, May 07, 2007 1:55 PM
  Subject: [TMIC] RE: L-Carnatine


  Trudy,

  It is a vitamin - an amino acid - which supposely "plays a rle in making 
fatty acids available for energy in muscle tissue" altho it has not been 
evaluated by FDA.  It is supposely an alternative to amantadine which is 
"considered to be a first-line treatment for MS & TM related fatigue".

  I've been taking 2 500 mg caplets 2X a day of L-Carnatine.  After approx. the 
3rd day, I did have a boost of energy but for the next 3 days, I slept anytime 
I sat down - sleeping anywhere from 30 minutes to 3 hours at a time.  Now again 
today, I feel more energetic but I'm not sure what tomorrow will bring.

  I will say that my muscle don't seem to hurt/ache as bad.  It is the constant 
chronic fatigue that I am having great difficulty with.  I use to be so 
energetic now it is a real chore to get up and just "BE" anymore.  I am in my 
17th month of TM.  I am not too happy to hear that things will probably be 
worse as I get older.  

  I've always had a high tolorance for pain but some days, I just have to sit 
and cry because I hurt so bad and my meds don't seem to phase it one bit.

  I take zanaflex (tizanidine) for the muscle spasms/contractions; Lortab 
(hydroco) for pain with X-strength tylenol in between; and zoloft for 
depression.  But, like I said some days it feels as if I'm just taking sugar 
pills.

  Did you get the TMA journal?  The article on Fatigue and Transverse Myelitis 
on page 49 may help to explain a little more.

  Hope this helped.

  Candy K.

- Original Message - 
From: Trudy 
To: [EMAIL PROTECTED];[EMAIL PROTECTED];[EMAIL PROTECTED] 
Cc: tmic-list@eskimo.com
Sent: 5/7/2007 3:57:39 PM 
Subject: L-Carnatine


Candis,

I have just heard about  L-Carnatine. What is it used for?? Is it a more 
"natural" drug???

Does it help with pain??

thanks

Trudy






From: Candis Kalley [mailto:[EMAIL PROTECTED] 
Sent: Sunday, May 06, 2007 11:33 PM
To: [EMAIL PROTECTED]; [EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Subject: [TMIC] allodynia & amantadine



I looked up allodynia - 

An example of touch allodynia is pain from the touch of clothing. Thermal 
allodynia occurs from a draft of warm or cold air on the skin. The March 17, 
1997 issue of Newsweek describes a patient who dreaded the breeze from a 
ceiling fan because it felt like razors cutting his flesh



I have this when I wear pants or in bed with a sheet on just above my knees 
anything touching there feels like a sunburn.  If a cold breeze like the air 
conditioner in the car hits my left arm/hand it feels like a burning sensation 
and also causes severe cramping and spasms.



I really didn't know the name of this but from what I read and experience 
it is allodynia both touch and thermal.



Well I tried the in place of amantadine.  After 3 days I did feel better - 
not as much muscle pain except for the spasms/cramping - but must have over 
done it because the past 3 days I have done nothing but sleep and have no 
desire to do anything else.  I know this could also be a sign of depression but 
whatever, I'm calling the Neuro tomorrow.  This is not a life.



Did anyone watch "Living with Cancer" on Discovery Health?  Too bad that TM 
isn't as well know as some of the other diseases.







  - Original Message - 

  From: [EMAIL PROTECTED] 

  To: [EMAIL PROTECTED] 

  Cc: tmic-list@eskimo.com

  Sent: 5/6/2007 10:22:27 PM 

  Subject: [TMIC] allodynia



  I've looked up 'allodynia', but still don't really understand it.  I've 
never heard of it before, and now 3 of you have just mentioned it.  Can you 
give me an example of how it works?

  Sally



--


  No virus found in this incoming message.
  Checked by AVG Free Edition. 
  Version: 7.5.467 / Virus Database: 269.6.5/793 - Release Date: 5/7/2007 2:55 
PM

RE: [TMIC] Lyrica

[Robert Pall]

Gunny,
 I have been on Lyrica for almost 2 years. Dr Kerr prescribed it for
me. I started out with 300 mg per day and since last October I have been
taking 450 mg.I cannot say if it helps pain because I am not really in
pain...I am in constant discomfort.Having said that Lyrica has been the
most effective med I have taken in 10 years. It has reduced the feeling
of pins & needles, numbness and banding. I have also found no side
effects other than I believe it increases my appetite (like marinal). 

Rob in New Jersey

-Original Message-
From: Gunny [mailto:[EMAIL PROTECTED] 
Sent: Monday, May 07, 2007 10:18 AM
To: Tmic-list@eskimo.com
Subject: [TMIC] Lyrica

   Is anybody on Lyrica and if so, could you tell me the benefits. I was
turned down for it because it's not designed to aid in Pain caused by
TM. It's supposed to be for pain caused by Diabetes which to me would be
diabetic Neuropathy, Not Peripheral. SAnyhoo, I ned to file an appeal,
so any info would be helpful.

gunny


PeoplePC Online
A better way to Internet
http://www.peoplepc.com

RE: [TMIC] Making TMC Known

[Candis Kalley]

I have thought about writing to some of the talk shows - Oprah, Ellen, etc.
Maybe even Discovery Health with their "Mystery Diagnoses" segment.  They
did have a segment on NEMO which is another disease that isn't common but
that is carried by females and passed to males. 

Every time I see the restless leg syndrome commercial, I just go bonkers. 
I had these symptoms for a month before my actual TM attack.  The RLS would
wake me up in the middle of the night.  This went on for approx. 2 months
before my first TM attack.  My second occurred just 3 days out of the
hospital after 3 1/2 weeks.

I also think that most Dr., even Neuro, don't know that much about TM. 
They also seem to know too little about MS a very close disease to TM - at
least that seems to the case here in SW FL probably due to all the
geriatric cases down here.

Candy K.


> [Original Message]
> From: Akua <[EMAIL PROTECTED]>
> To: 
> Date: 5/7/2007 4:41:53 PM
> Subject: [TMIC] Making TMC Known
>
> >   Too bad that TM isn't as well know as some of the other diseases.
>
> I wonder if there are ways to make this happen?
> Any ideas as to places we should write? funding efforts to promote?
>
> This is month number 17 for me and I'm anxious to be finished with this.
> I feel like a solution is close at hand but I can't figure out what 
> it is on my own.
> I'm T-10-11, in a wheel chair and have gained some return since 
> taking naltrexone.
>
> Akua
>
>
> -- 
>
> http://www.healrecover.blogspot.com
> http://www.akualezli.blogspot.com

[TMIC] RE: L-Carnatine

[Candis Kalley]

Trudy,

It is a vitamin - an amino acid - which supposely "plays a rle in making fatty 
acids available for energy in muscle tissue" altho it has not been evaluated by 
FDA.  It is supposely an alternative to amantadine which is "considered to be a 
first-line treatment for MS & TM related fatigue".

I've been taking 2 500 mg caplets 2X a day of L-Carnatine.  After approx. the 
3rd day, I did have a boost of energy but for the next 3 days, I slept anytime 
I sat down - sleeping anywhere from 30 minutes to 3 hours at a time.  Now again 
today, I feel more energetic but I'm not sure what tomorrow will bring.

I will say that my muscle don't seem to hurt/ache as bad.  It is the constant 
chronic fatigue that I am having great difficulty with.  I use to be so 
energetic now it is a real chore to get up and just "BE" anymore.  I am in my 
17th month of TM.  I am not too happy to hear that things will probably be 
worse as I get older.  

I've always had a high tolorance for pain but some days, I just have to sit and 
cry because I hurt so bad and my meds don't seem to phase it one bit.

I take zanaflex (tizanidine) for the muscle spasms/contractions; Lortab 
(hydroco) for pain with X-strength tylenol in between; and zoloft for 
depression.  But, like I said some days it feels as if I'm just taking sugar 
pills.

Did you get the TMA journal?  The article on Fatigue and Transverse Myelitis on 
page 49 may help to explain a little more.

Hope this helped.

Candy K.

- Original Message - 
From: Trudy 
To: [EMAIL PROTECTED];[EMAIL PROTECTED];[EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Sent: 5/7/2007 3:57:39 PM 
Subject: L-Carnatine


Candis,
I have just heard about  L-Carnatine. What is it used for?? Is it a more 
“natural” drug???
Does it help with pain??
thanks
Trudy




From: Candis Kalley [mailto:[EMAIL PROTECTED] 
Sent: Sunday, May 06, 2007 11:33 PM
To: [EMAIL PROTECTED]; [EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Subject: [TMIC] allodynia & amantadine

I looked up allodynia - 
An example of touch allodynia is pain from the touch of clothing. Thermal 
allodynia occurs from a draft of warm or cold air on the skin. The March 17, 
1997 issue of Newsweek describes a patient who dreaded the breeze from a 
ceiling fan because it felt like razors cutting his flesh

I have this when I wear pants or in bed with a sheet on just above my knees 
anything touching there feels like a sunburn.  If a cold breeze like the air 
conditioner in the car hits my left arm/hand it feels like a burning sensation 
and also causes severe cramping and spasms.

I really didn't know the name of this but from what I read and experience it is 
allodynia both touch and thermal.

Well I tried the in place of amantadine.  After 3 days I did feel better - not 
as much muscle pain except for the spasms/cramping - but must have over done it 
because the past 3 days I have done nothing but sleep and have no desire to do 
anything else.  I know this could also be a sign of depression but whatever, 
I'm calling the Neuro tomorrow.  This is not a life.

Did anyone watch "Living with Cancer" on Discovery Health?  Too bad that TM 
isn't as well know as some of the other diseases.



- Original Message - 
From: [EMAIL PROTECTED] 
To: [EMAIL PROTECTED] 
Cc: tmic-list@eskimo.com
Sent: 5/6/2007 10:22:27 PM 
Subject: [TMIC] allodynia

I've looked up 'allodynia', but still don't really understand it.  I've never 
heard of it before, and now 3 of you have just mentioned it.  Can you give me 
an example of how it works?
Sally

Re: [TMIC] Detromethorphan

[Sandy Heidel]

I am not sure of his dosage. But he swears by it.
Sandy
- Original Message - 
From: <[EMAIL PROTECTED]>

To: "Sandy Heidel" <[EMAIL PROTECTED]>; "TM list" 
Sent: Monday, May 07, 2007 2:41 PM
Subject: Re: [TMIC] Detromethorphan





Anybody else every try this??

Sandy,

I've been using Dextromethorphan for two or more years.

I use 60 mg twice a day.

Up till recently I used DexAlone- 30 mg gelcaps, #30 for $14., but the 
company stopped making it, so now it needs to be compounded so costs $50. 
for #30


What dosage does your friend use??

F 

[TMIC] Making TMC Known

[Akua]

  Too bad that TM isn't as well know as some of the other diseases.


I wonder if there are ways to make this happen?
Any ideas as to places we should write? funding efforts to promote?

This is month number 17 for me and I'm anxious to be finished with this.
I feel like a solution is close at hand but I can't figure out what 
it is on my own.
I'm T-10-11, in a wheel chair and have gained some return since 
taking naltrexone.


Akua


--

http://www.healrecover.blogspot.com
http://www.akualezli.blogspot.com

Re: [TMIC] Detromethorphan

[[EMAIL PROTECTED]]

> Anybody else every try this??
 Sandy,

I've been using Dextromethorphan for two or more years.

I use 60 mg twice a day.

Up till recently I used DexAlone- 30 mg gelcaps, #30 for $14., but the company 
stopped making it, so now it needs to be compounded so costs $50. for #30

What dosage does your friend use??

F

Re: [TMIC] Lyrica

[Natalie Boyles]

Hi Gunny,
Do a www.yahoo.com search using the words: Lyrica and Transverse
Myelitis Guess do a google.com search too. I did find lots of good links
on yahoo.

I dont take Lyrica. I am still working with the Low Dose Naltexone off and
on. It makes me sick after a while, but boy it can work wonders. I must find
a doctor who will prescribe the patch version for me so I can by pass the
stomach problems it causes for me.
Natalie

On 5/7/07, Gunny <[EMAIL PROTECTED]> wrote:


   Is anybody on Lyrica and if so, could you tell me the benefits. I was
turned down for it because it's not designed to aid in Pain caused by TM.
It's supposed to be for pain caused by Diabetes which to me would be
diabetic Neuropathy, Not Peripheral. SAnyhoo, I ned to file an appeal, so
any info would be helpful.

gunny


PeoplePC Online
A better way to Internet
http://www.peoplepc.com

[TMIC] Re: Pain

[bobby jim hijar]

For the past few years I've had an increase in pain in almost all my joints as 
well as part of my lower back, around L-3.

Dr Gott's column a few days ago mentioned that castor oil was good for such 
pain(s).
Also, there is a new (to me) ointment called Castiva.   I've been using it for 
over a week and I have noticed a lessening of my discomforts.. but then 
maybe am imagining things  (?).

At any rate, here's an URL with more info on that stuff.

http://www.castivabrands.com/warming/

Cheers,   Bobberinoit's 88ºF outside already Arggghhh...!

[TMIC] L-Carnatine

[Trudy]

Candis,

I have just heard about  L-Carnatine. What is it used for?? Is it a more
"natural" drug???

Does it help with pain??

thanks

Trudy

 

  _  

From: Candis Kalley [mailto:[EMAIL PROTECTED] 
Sent: Sunday, May 06, 2007 11:33 PM
To: [EMAIL PROTECTED]; [EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Subject: [TMIC] allodynia & amantadine

 

I looked up allodynia - 

An example of touch allodynia is pain from the touch of clothing. Thermal
allodynia occurs from a draft of warm or cold air on the skin. The March 17,
1997 issue of Newsweek describes a patient who dreaded the breeze from a
ceiling fan because it felt like razors cutting his flesh

 

I have this when I wear pants or in bed with a sheet on just above my knees
anything touching there feels like a sunburn.  If a cold breeze like the air
conditioner in the car hits my left arm/hand it feels like a burning
sensation and also causes severe cramping and spasms.

 

I really didn't know the name of this but from what I read and experience it
is allodynia both touch and thermal.

 

Well I tried the in place of amantadine.  After 3 days I did feel better -
not as much muscle pain except for the spasms/cramping - but must have over
done it because the past 3 days I have done nothing but sleep and have no
desire to do anything else.  I know this could also be a sign of depression
but whatever, I'm calling the Neuro tomorrow.  This is not a life.

 

Did anyone watch "Living with Cancer" on Discovery Health?  Too bad that TM
isn't as well know as some of the other diseases.

 

 

 

- Original Message - 

From: [EMAIL PROTECTED] 

To: [EMAIL PROTECTED] 

Cc: tmic-list@eskimo.com

Sent: 5/6/2007 10:22:27 PM 

Subject: [TMIC] allodynia

 

I've looked up 'allodynia', but still don't really understand it.  I've
never heard of it before, and now 3 of you have just mentioned it.  Can you
give me an example of how it works?

Sally

RE: [TMIC] allodynia, Lyrica, pain

[Trudy]

Feb. 7, 2002 --- the night from hell  Never, ever forget that date...
My problems are from the waist down. I cannot have a soft piece of cloth,
nightgown, etc... against my legs... awful pain... My neuro could not decide
if I have TM or MS so in December I started taking a shot of copaxone every
day. And then I take cymbalta for pain and depression. After 5 yrs. of TM I
am still trying different drugs. I was on 2400mg. Neurontin till March of
this year. I have now switched to 2 75mg. of Lyrica twice a day! I'm going
to keep trying it for 3 months.. My pain has increased slightly over the
years. I guess that's why I keep wanting to try something different. The
Lyrica numbs my legs but sometimes too much as I can't feel my feet... but
it has helped with the burning, and the tight bands around the legs.
Occasionally I take vicodin when I've overdone it at work or shopping or
long trips in the car.  Supposedly Lyrica is just the "latest" drug to take
the place of Neurontin.
Trudy 
 


-Original Message-
From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Monday, May 07, 2007 10:43 AM
To: [EMAIL PROTECTED]; tmic-list@eskimo.com
Subject: Re: [TMIC] allodynia

> I'm also interested in Heather's question: how many people w/TM more>
than 3 or 4 years have gotten >worse as time goes by?
> 

Perhaps the question should be:

 Are there any of us who have NOT had an increase in symptoms??

F

Re: [TMIC] Message

[Heather & Pieter]

Did you hit 'REPLY ALL' or did you just hit 'REPLY' which would go directly to 
him and not to the group? 

I'm not sure if that would mean anything.

Heather in Calgary 

  - Original Message - 
  From: natalie mizenko 
  To: Transverse Myellitis 
  Sent: Monday, May 07, 2007 11:48 AM
  Subject: [TMIC] Message


  I just replied to Gunny a message about 2 hours ago on Lyrica and it still 
hasn't posted.  Would there be a reason it hasn't??  Thanks, Natalie


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


--


  No virus found in this incoming message.
  Checked by AVG Free Edition. 
  Version: 7.5.467 / Virus Database: 269.6.5/793 - Release Date: 5/7/2007 2:55 
PM

[TMIC] Message

[natalie mizenko]

I just replied to Gunny a message about 2 hours ago on Lyrica and it still 
hasn't posted.  Would there be a reason it hasn't??  Thanks, Natalie
   
-
Ahhh...imagining that irresistible "new car" smell?
 Check outnew cars at Yahoo! Autos.

Re: [TMIC] Re: pain

[Heather & Pieter]

Hello,

Thank you Barbara A. and Barbara H. and Frank for your answers.  I had hoped 
that the answer would be 'no' but thought I could get some 'yesses'.  

I guess with myself being at year 4 come Sept. I will just have to keep on 
doing what I'm doing and hope that the pain keeps at bay or at least 
semi-tolerable.  I use Gabapentin (2400 mg down from 3200mg)  and Baclofen (10 
to 20 mg down from 40mg) every day.  I take the Gaba every 5 hours starting 
when I wake up approx 7 a.m. .  The Baclofen is at night. 

Thanks again,

Heather in Calgary  
  - Original Message - 
  From: [EMAIL PROTECTED] 
  To: [EMAIL PROTECTED] 
  Cc: tmic-list@eskimo.com 
  Sent: Monday, May 07, 2007 5:14 AM
  Subject: Re: [TMIC] Re: pain


  Heather, I haven't had the particular type of pain mentioned (allodynia, 
where something not usually painful, like clothes, causes pain). I have had 
sensitivity in certain spots (middle of my back, top of my head, and my knees), 
but it is more a "I am going to jump out of my skin if you touch there" 
feeling, almost like jarring your "funny" bone.

  I originally had a lot of pain in my upper left arm, like a too-tight blood 
pressure cuff. That went off and on for a long time, but I haven't felt it in a 
long time.

  The pain I deal with now is muscle spasms right in the middle of my back. 
That has been getting increasingly worse. I used to wear a pain patch like the 
Icy Hot or Absorbine Jr, kinds every once in a while -- now it is every day, 
plus some days taking ibuprofen as well. I keep thinking I probably ought to go 
have it checked out, but as long as these measures keep it manageable, I keep 
plugging along.

  I also had a lot of that burning/freezing pain in my left hand and arm at 
first, but that has lessened. I don't feel it often now.

  So, in answer to your question, one type of pain has increased, but others 
have lessened. I am 11 years into my TM adventure.

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

  In a message dated 5/7/2007 1:26:03 AM Eastern Daylight Time, [EMAIL 
PROTECTED] writes:
Hearing  several people talking about the pain getting worse as we get 
older 
and further into this is quite disheartening.  I will be at year 4 come 
Sept.

Out of curiosity.  For those of you who have had TM for longer than 3 to 5 
years are you ALL experiencing increases in pain as the years go by or is 
it 
only a few??

Thanks,
Heather in Calgary






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[TMIC] dr appt.and results

[ROBERT DIEHL]

dr said my vitial signs were great this time and when he called back about my 
blood work
he said the readings  were the best they have been in a long long 
time.where he wanted them or lower.
asked him if he
thought the  LOW DOSE Naltrexone had anything to do with it because it helps 
make the 
immune system stronger...been on it three months now...4.5 ml. take one a day 
at bed timehe said we'll see how the blood work is next time then
he also gave me some samples of lycria for the pain...tried it for two weeks 
and gave up on it...
didn't do anything for me...i'll just live with the pain then...i go to him 
every three months

[TMIC] Detromethorphan

[Sandy Heidel]

Yes, the cough syrup.
I have a friend who has spinal cord damage from an accident and has 
intermittent infections and inflammation. His ongoing problems are very much 
like TM although caused by a specific trauma to the column and cord.  His 
brother and sister in law are both doctors, specialists who do both treatment 
and research. They recently tipped him to  a study using dextromethorphan (over 
the counter) to supplement his regular pain drugs. He avoids taking the drugs 
as much as possible due to the fuzzy brain feeling he hates.  But he said the 
dextro has reduced his use of pain drugs by 50%! He said the dextro does not 
cause drowsiness or any other side effects (to him).  
He said the study he read said the path the drug follows in your system is a 
direct line to the spinal cord where it acts on the nerve fibers to settle them 
down.  Sounds good to me! 
Anybody else every try this??
Sandy
In Wisconsin where my first turkey season has come and gone without a bird to 
brag about.I have another season in two weeks so stay tuned.

RE: [TMIC] allodynia

[Tracey L. Black]

My daughter has not had an increase in symptoms. Although we have
noticed lately that she has been getting a few spasms, here and there,
but when she gets them she seems to be in a progression pattern and
steadily is getting more and more strength. They have her walking with
one forearm crutch at therapy and each day she does better than the day
before. She has been walking on the treadmill at 1.1 miles per hour for
10 minutes, and this is after she has walked outside around the therapy
parking lot for about 15 minutes. She has been so blessed that she has
not gotten the pain, and the long term effects, that just about everyone
on here has talked about. She had some "creepy crawlies" in her right
leg the other night but after a little while, it went away by itself.  


Tracey L. Black
Certified Insurance Service Representative
Hockley & O'Donnell Insurance Agency
Phone - 717-334-6741, x 29
Fax - 717-334-3414
 

Thank you for providing information to us. Please beware that no
coverage is bound and no change to your insurance program is confirmed
until verified by a licensed agent during regular business hours. If you
do not hear from us within 1 business day, please re-contact us in case
your information has not been retained.


-Original Message-
From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Monday, May 07, 2007 10:43 AM
To: [EMAIL PROTECTED]; tmic-list@eskimo.com
Subject: Re: [TMIC] allodynia

> I'm also interested in Heather's question: how many people w/TM more>
than 3 or 4 years have gotten >worse as time goes by?
> 

Perhaps the question should be:

 Are there any of us who have NOT had an increase in symptoms??

F

Re: [TMIC] allodynia

[[EMAIL PROTECTED]]

> I'm also interested in Heather's question: how many people w/TM more>  than 3 
> or 4 years have gotten >worse as time goes by?
> 

Perhaps the question should be:

 Are there any of us who have NOT had an increase in symptoms??

F

Re: [TMIC] medical marijuana

[[EMAIL PROTECTED]]

> I know a few of you have mentioned treating your pain with marijuana (or>  
> derivitives thereof) and I can't help but wonder if it's really benefic> ial 
> in the long run, considering the negative effect that it has on the > immune 
> system?  Have I been misled?

Sally,

I believe you have been misled.  Cannabinoids have no effect on the immune 
system, to my knowledge.

the U.S. government spreads a lot of "Misstatements" about cannabinoids- it's 
part of the war  on drugs.

F

[TMIC] Lyrica

[Gunny]

   Is anybody on Lyrica and if so, could you tell me the benefits. I was turned 
down for it because it's not designed to aid in Pain caused by TM. It's 
supposed to be for pain caused by Diabetes which to me would be diabetic 
Neuropathy, Not Peripheral. SAnyhoo, I ned to file an appeal, so any info would 
be helpful.

gunny


PeoplePC Online
A better way to Internet
http://www.peoplepc.com

Re: [TMIC] allodynia

[pjv1234]

Barbara 
You explain this very well.  I am also on Neurontin and know when it is time 
for my dose by how I feel.  I increased my dose by changing from every eight 
hours to every 6 hours.  I just took one at 5.5 hrs because I felt the need.  
We aren't junkies.  We could quit our meds if it wasn't for the pain.  It's not 
easy to quit the narcotics. BTW  it take 600mg Neurontin and 10mg Baclofen 4x 
daily. 

Patti - Michigan
 [EMAIL PROTECTED] wrote: 

=
Hi Sally,
 
My nerve pain is like I have an extremely painful sunburn while sitting in  a 
pool of ice.  That's the freezing/burning for me.  My lesion was at  T8-10, 
and this is the most painful from just above the waist to my toes.   My torso 
from about my bra strap to my waist is generally warm, but not hot or  
freezing.  Not anywhere near as sensitive as the rest of my lower  half.
 
The sensitivity to touch is from waist to toes, and sometimes worse than  
others.  The Neurontin is my drug of choice for this and is extremely  useful 
for 
it.  It's really easy to tell when it's time for my next dose  though, and 
it's horrible if I'm running late and until that next one kicks  in.   Gosh, I 
sound like a junkie, maybe I am and in denial.  Not  on a narcotic though, 
other than occassionally.   
 
Hugs, Barbara A



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Re: [TMIC] allodynia

[pjv1234]

It's not just the 3 of them.  I have exactly the same symptoms and problems 
with clothes, breezes, fans, air-conditioning, sun, heat, pets, and 
unfortunately human touches.  I've learned to prepare for someone touching me 
and forcing myself not to jump or pull away, but it still hurts.  I grind my 
teeth during the day as I try to ignore these symptoms of TM.  

Patti - Michigan- Give me a full hug, but please don't just  brush up against 
me!
 "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> wrote: 

=
Candis, Frank, & Gillian, 
Wow!  I've never heard of it!  That sounds terrible, especially on top of 
everything else!  Some of my 'pain' feels like 'freeze-burn' or a bad sunburn, 
but it's not that big of a thing - just kind of distracting or irritating.  
Yours sounds really painful!  Does anyone know what causes it?   Obviously a 
screwed up nervous system, but I can't picture how it would work.  Does anyone 
else out there have this besides these 3 people?
Sally
PS: I'm also interested in Heather's question: how many people w/TM more than 3 
or 4 years have gotten worse as time goes by?

Re: [TMIC] Cold Spots

[pjv1234]

My husband is a 15 year diabetic and uses a Homedics percussion messager on his 
legs every night while watching TV.  He curls up on the sofa and does what can 
be reached in that position then changes and curls up next to me and does the 
other leg.  I don't know if this would help you between messages with your 
therapist, but he knows it helps the numbing in his feet and legs.  His feet 
are in good shape thanks to the blood flow created by the messages.

Patti - Michigan 
 [EMAIL PROTECTED] wrote: 

=
Barbara, I would hug everyone if I could.  This is so great.  No one
(except this bunch) knows how disconcerting it is to be leaking, voiding,
urinating all the time, even if I do have enough pads on to keep it from
leaking to outer clothes.  Also, with all that padding, how much is it
affecting my gait?  Walking with mostly numb feet is no easy task, as you
all know.  I guess that's what is so truly enjoyable about horseback
riding--he has full function of his legs-all 4 of them, and I get to
experience that in a way.  The spasms in the worst affected muscles in my
legs and ankles keep them very stiff.  The massage therapist is working
very hard on getting some relaxation from those muscles.  I'd hate to
think how my feet would be curled down if she hadn't been working on my
legs weekly!  Now I just have to get my stamina back after having to stay
quiet for 2 months.
Buck up, gang--technology is definitely worth it!Cora

> Hello Cora,
>
> You are just the great success story!  I am just so thrilled for  you!
> Thanks so much for sharing and giving hope to so many.
>
> Hugs, Barbara A
>
>
>
> ** See what's free at
> http://www.aol.com.
>

Re: RE: [TMIC] Another Symptom

[pjv1234]

Rick
I think one of the best things for TM is to have an interest in something that 
keeps us moving.  It sounds like you are really enjoying those 100 acres and 
all that they offer.  Thanks for sharing - I envisioned the deer and wild 
turkeys and smiled while reading your account.

Patti - Michigan - we live on a 60 foot wide city lot with robins, morning 
doves and squirrels for wilf life.
 [EMAIL PROTECTED] wrote: 

=
One of the smartest things one can do is takes notes about the way you feel is 
to write things down. Label your pain on a 1 to 10 according to your level. I 
have been feeling better lately but I attribute that to the amount of excercise 
that I get from riding my 4 wheel  drive Polaris. I live on about 100 acres of 
woods and farmland. I get one heck of a work out, and I always carry a walkie 
talkie just in case I get into trouble. We can't afford to take chances. But my 
4x 4 can get me out of most things that I can get into. But I NEVER TAKE 
CHANCES! We have alot of deer on our land and although I don't  hunt any more, 
Its quite thrilling to have a few of them come by. Plus we have wild turkey and 
I will take one of them on ocassion. Turkey are very smart an can be quite hard 
to fool.
>   Getting back on subject  do your home work If your lucky to  find a real 
> good neuro he can't help you if you don't make notes. Your friend Rick
> From: "Trudy " <[EMAIL PROTECTED]>
> Date: 2007/05/04 Fri PM 02:07:17 EDT
> To: "'Natalie Boyles'" <[EMAIL PROTECTED]>, 
> "'Alton Ryder'" <[EMAIL PROTECTED]>
> CC: <[EMAIL PROTECTED]>,  
> Subject: RE: [TMIC] Another Symptom
> 
> I too have had my arms flail away when I  have fallen asleep in a chair
> watching the awful news or reading the even more depressing paper. I don't
> think it happens when I am flat in bed. Tho I have been known to give my
> husband a big kick once in awhile.   Of course he probably deserves it!!
> :-) . He is my hero..
> 
> Trudy
> 
>  
> 
>   _  
> 
> From: Natalie Boyles [mailto:[EMAIL PROTECTED] 
> Sent: Thursday, May 03, 2007 5:48 PM
> To: Alton Ryder
> Cc: [EMAIL PROTECTED]; tmic-list@eskimo.com
> Subject: Re: [TMIC] Another Symptom
> 
>  
> 
> Okay you guys, you sound like my husband and he is healthy --- I wonder. He
> flaps his arms and jerks his legs in his sleep so badly, I must leave the
> bed.  If you find an answer to this dilemma please let me know about it. I
> am tired of being beaten.  
> Natalie
> 
> On 5/3/07, Alton Ryder <[EMAIL PROTECTED]> wrote:
> 
> I have something similar.  Sometimes, when I am lying down during the
> day and I start to nod off, both arms will fly forward and the left
> leg might jerk towards my head. Not always, but it always wakes me.
> It doesn't happen when I go to bed. If either hand is holding 
> something, that hand will not participate.
> 
> Alton, who thought this unique and now no longer
> 
>  
> 
> 
> 

Re: [TMIC] Re: pain

[JHarper33]

 
Heather, I haven't had the particular type of pain mentioned  (allodynia, 
where something not usually painful, like clothes, causes pain). I  have had 
sensitivity in certain spots (middle of my back, top of my head, and my  
knees), 
but it is more a "I am going to jump out of my skin if you touch there"  
feeling, almost like jarring your "funny" bone.
 
I originally had a lot of pain in my upper left arm, like a  too-tight blood 
pressure cuff. That went off and on for a long time, but I  haven't felt it in 
a long time.
 
The pain I deal with now is muscle spasms right in the middle  of my back. 
That has been getting increasingly worse. I used to wear a pain  patch like the 
Icy Hot or Absorbine Jr, kinds every once in a while -- now it is  every day, 
plus some days taking ibuprofen as well. I keep thinking I probably  ought to 
go have it checked out, but as long as these measures keep it  manageable, I 
keep plugging along.
 
I also had a lot of that burning/freezing pain in my left hand  and arm at 
first, but that has lessened. I don't feel it often now.
 
So, in answer to your question, one type of pain has  increased, but others 
have lessened. I am 11 years into my TM  adventure.
 
Barbara H.
_http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/) 
 
In a message dated 5/7/2007 1:26:03 AM Eastern Daylight Time,  
[EMAIL PROTECTED] writes:

Hearing  several people talking about the pain getting worse as we  get older 
and further into this is quite disheartening.  I will be at  year 4 come 
Sept.

Out of curiosity.  For those of you who have  had TM for longer than 3 to 5 
years are you ALL experiencing increases in  pain as the years go by or is it 
only a few??

Thanks,
Heather in  Calgary


 



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Re: [TMIC] allodynia

[Balmatmic]

Hi Sally,
 
My nerve pain is like I have an extremely painful sunburn while sitting in  a 
pool of ice.  That's the freezing/burning for me.  My lesion was at  T8-10, 
and this is the most painful from just above the waist to my toes.   My torso 
from about my bra strap to my waist is generally warm, but not hot or  
freezing.  Not anywhere near as sensitive as the rest of my lower  half.
 
The sensitivity to touch is from waist to toes, and sometimes worse than  
others.  The Neurontin is my drug of choice for this and is extremely  useful 
for 
it.  It's really easy to tell when it's time for my next dose  though, and 
it's horrible if I'm running late and until that next one kicks  in.   Gosh, I 
sound like a junkie, maybe I am and in denial.  Not  on a narcotic though, 
other than occassionally.   
 
Hugs, Barbara A



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Re: [TMIC] Re: pain

[Balmatmic]

Sadly, I am almost at year 8, and have also had an increase in pain over  the 
past years.  I try not to admit very often, but cannot do so any  longer.
 
A couple of years ago I went to a pain med doc and she was a bit too  free 
with the Vicodin for the pain in my back and leg.  I'm not  talking about the 
nerve pain that is so difficult to treat, this is  the regular pain that 
narcotics work so well for.  She wanted me  to take them around the clock in 
order to 
function better without so much pain,  but I was very worried about becoming 
addicted to the Vicodin.  So, I  only take it when I absolutely need it.
 
I have wrestled with the concept of asking my doctor for a change in  
medications for quite a while, but have heard so many of you discuss different  
side 
effects when changing meds.  I haven't had any noticable side effects  with 
mine, and like it that way.  But, I am really not anywhere near  comfortable 
and 
may need to make the move towards a change in strength or a new  med soon.
 
Hugs to all, Barbara A



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