Re: [TMIC]

[Janice Nichols]

Re: [TMIC]Is it possible that with both brain and spine lesions that you have 
MS rather than TM?Janice



From: Dalton Garis 
Sent: Thursday, June 10, 2010 10:34 PM
To: Janice Nichols ; Laura Beaudin ; tmic-l...@eskimo.net 
Subject: Re: [TMIC]


Janice;

I can function normally for spurts of time, but no stamina in the muscles at 
all.  My lower legs and lower arms are hit with constant aching and feel as if 
they were filled with hot lead.

My spine is very sore now with many different pains.  My diaphragm and upper 
stomach area is burning and squeezing all the time.  I cant get comfortable 
anymore, no matter how I sit, recline or lie down.

The biggest problem is with the attacks of spasticity.  They are overall 
convulsions affecting all my muscles and causing me to arch my back and legs 
backwards, then forwards, pinning my head aagainst my chest and leaving me with 
no control over arms, legs and speech.

They ate almost epileptic fits, and likely caused by brain and spine lesions.  
I take Epanutin for this, which is an anti-convulsive medication given to 
epileptics.  It works a little but the spastic qattacks can come at any time.  
I will feel it in my voice as I try to talk and become halting in speech.  Then 
the back arches and the arms go flying upwarrds.  This can last for 20 minutes 
or 6 hours, one convulsion after another.  When it is finished with me all my 
muscles and backbones ache and giv e me a lot of pain.

But I manage somehow and I am happy.  Life is all about solving complications 
and problems, so, we get good at it.

I must stop now, as both my eye focusing and my fingers are quitting on me.

Kind regards,

Dalton Garis
Abu Dhabi/New York


On 11/6/10 2:22 AM, "Janice Nichols"  wrote:


  Do you mind my asking what are you able to do? Were your arms affected 
and how did it leave you with walking/not walking?
  Janice

  From: Laura Beaudin   
  Sent: Thursday, June 10, 2010 11:43 AM
  To: Janice Nichols   ; tmic-l...@eskimo.net 
  Subject: Re: [TMIC]

  All my docs and therapists are on the Spinal Cord Injury Unit of our rehab 
hospital...definitely qualified. It sucks, but sometimes the best efforts don't 
work. I was on this unit as an inpatient for 6 weeks last summer, they were not 
able to get much back so the time ended up being spent on how to adjust to 
changes and become independent in spite of it.  

  Transverse Myelitis IS a Spinal Cord Injury...just not a traumatic one (ie, 
not caused by an accident). 

  Laura

  http://practical-homeschooling.org
  www.laurascoolstuff.com  



  On Thu, Jun 10, 2010 at 10:34 AM, Janice Nichols  
wrote:


 
I am getting definite improvement with  PT. My pain management doc 
recommended a PT guy that  specializes with damaged spines (like us).  He  
knows

what he is doing.We are taking it  very slow because of the severe back 
arthritis I have and the  myelitis.  I also do my exercises at home in  
between sessions.

Can you get a PT especially recommended by your doc  because of our special 
 problem?  The hamstring  problem is definitely from myelitis.

Janice

 
 
From: Laura Beaudin   
 
Sent: Thursday, June 10, 2010 11:14 AM
 
To: Janice Nichols   
 
Subject: Re: [TMIC]
 
 
 
 

Ditto...more bruising would be normal (and often is) if you  have decreased 
sensation. As for hamstrings, mine are shortening and despite  PT, I can't get 
them flexible again. 
Laura

http://practical-homeschooling.org
www.laurascoolstuff.com  



 
On Thu, Jun 10, 2010 at 9:04 AM, Janice Nichols  
wrote:
 


   
  Also the  baclofen! Good luck and keep in touch in New York.  
Are  you going to live there now?

  Janice

   

   
   
  From: Dalton Garis   
   
  Sent: Wednesday, June 09, 2010 11:44 PM
   
  To: Janice Nichols   ; tmic-list@eskimo.com 
;  Leslie Garis   ; Garis, Brooks (Darien,  CT) 
  
   
  Subject: Re: [TMIC] 
   

  I haven't;

  But I was in very heavy labor  employment before returning to get a PhD 
at aged 35, with lots of broken  bones, back fusions, hardware, the works.  So, 
I wouldn't notice  anyway.

  As to the hamstring, also, no.  For me the spasticity  and convulsive 
attacks when I try to speak during stressful situations is  absolutely the 
biggest problem.  And no one's heard of that.  But  I read about this being a 
well documented effect of TM, that is, spasticity  in some form, on the Johns 
Hopkins website.  I also have uncooperative  legs and hands a lot of the time.

  But I c

Re: [TMIC]

[Dalton Garis]

Janice;

I can function normally for spurts of time, but no stamina in the muscles at
all.  My lower legs and lower arms are hit with constant aching and feel as
if they were filled with hot lead.

My spine is very sore now with many different pains.  My diaphragm and upper
stomach area is burning and squeezing all the time.  I cant get comfortable
anymore, no matter how I sit, recline or lie down.

The biggest problem is with the attacks of spasticity.  They are overall
convulsions affecting all my muscles and causing me to arch my back and legs
backwards, then forwards, pinning my head aagainst my chest and leaving me
with no control over arms, legs and speech.

They ate almost epileptic fits, and likely caused by brain and spine
lesions.  I take Epanutin for this, which is an anti-convulsive medication
given to epileptics.  It works a little but the spastic qattacks can come at
any time.  I will feel it in my voice as I try to talk and become halting in
speech.  Then the back arches and the arms go flying upwarrds.  This can
last for 20 minutes or 6 hours, one convulsion after another.  When it is
finished with me all my muscles and backbones ache and giv e me a lot of
pain.

But I manage somehow and I am happy.  Life is all about solving
complications and problems, so, we get good at it.

I must stop now, as both my eye focusing and my fingers are quitting on me.

Kind regards,

Dalton Garis
Abu Dhabi/New York


On 11/6/10 2:22 AM, "Janice Nichols"  wrote:

> Do you mind my asking what are you able to do? Were your arms affected and
> how did it leave you with walking/not walking?
> Janice
> 
> From: Laura Beaudin 
> Sent: Thursday, June 10, 2010 11:43 AM
> To: Janice Nichols   ; tmic-l...@eskimo.net
> Subject: Re: [TMIC]
> 
> All my docs and therapists are on the Spinal Cord Injury Unit of our rehab
> hospital...definitely qualified. It sucks, but sometimes the best efforts
> don't work. I was on this unit as an inpatient for 6 weeks last summer, they
> were not able to get much back so the time ended up being spent on how to
> adjust to changes and become independent in spite of it.
> 
> Transverse Myelitis IS a Spinal Cord Injury...just not a traumatic one (ie,
> not caused by an accident).
> 
> Laura
> 
> http://practical-homeschooling.org
> www.laurascoolstuff.com 
> 
> 
> 
> On Thu, Jun 10, 2010 at 10:34 AM, Janice Nichols 
> wrote:
>>  
>>  
>> I am getting definite improvement with  PT. My pain management doc
>> recommended a PT guy that  specializes with damaged spines (like us).  He
>> knows
>>  
>> what he is doing.We are taking it  very slow because of the severe back
>> arthritis I have and the  myelitis.  I also do my exercises at home in
>> between sessions.
>>  
>> Can you get a PT especially recommended by your doc  because of our special
>> problem?  The hamstring  problem is definitely from myelitis.
>>  
>> Janice
>>  
>>  
>>  
>> From: Laura Beaudin 
>>  
>> Sent: Thursday, June 10, 2010 11:14 AM
>>  
>> To: Janice Nichols 
>>  
>> Subject: Re: [TMIC]
>>  
>>  
>>  
>>  
>> 
>> Ditto...more bruising would be normal (and often is) if you  have decreased
>> sensation. As for hamstrings, mine are shortening and despite  PT, I can't
>> get them flexible again.
>> Laura
>> 
>> http://practical-homeschooling.org
>> www.laurascoolstuff.com 
>> 
>> 
>> 
>>  
>> On Thu, Jun 10, 2010 at 9:04 AM, Janice Nichols 
>> wrote:
>>  
>>>  
>>>  
>>> Also the  baclofen! Good luck and keep in touch in New York.
>>> Are  you going to live there now?
>>>  
>>> Janice
>>>  
>>>  
>>> 
>>>  
>>>  
>>> From: Dalton Garis 
>>>  
>>> Sent: Wednesday, June 09, 2010 11:44 PM
>>>  
>>> To: Janice Nichols   ; tmic-list@eskimo.com ;
>>> Leslie Garis   ; Garis, Brooks (Darien,  CT)
>>> 
>>>  
>>> Subject: Re: [TMIC]
>>>  
>>> 
>>> I haven¹t;
>>> 
>>> But I was in very heavy labor  employment before returning to get a PhD at
>>> aged 35, with lots of broken  bones, back fusions, hardware, the works.  So,
>>> I wouldn¹t notice  anyway.
>>> 
>>> As to the hamstring, also, no.  For me the spasticity  and convulsive
>>> attacks when I try to speak during stressful situations is  absolutely the
>>> biggest problem.  And no one¹s heard of that.  But  I read about this being
>>> a well documented effect of TM, that is, spasticity  in some form, on the
>>> Johns Hopkins website.  I also have uncooperative  legs and hands a lot of
>>> the time.
>>> 
>>> But I can¹t keep my left foot up  while walking now, so I wear western boots
>>> with big heels.  They allow  me to walk without the need for a foot brace.
>>> 
>>> Here¹s hoping I don¹t  get spastic in the airport or on the plane so i

Re: [TMIC]

[Janice Nichols]

Do you mind my asking what are you able to do? Were your arms affected and 
how did it leave you with walking/not walking?
Janice


From: Laura Beaudin 
Sent: Thursday, June 10, 2010 11:43 AM
To: Janice Nichols ; tmic-l...@eskimo.net 
Subject: Re: [TMIC]


All my docs and therapists are on the Spinal Cord Injury Unit of our rehab 
hospital...definitely qualified. It sucks, but sometimes the best efforts don't 
work. I was on this unit as an inpatient for 6 weeks last summer, they were not 
able to get much back so the time ended up being spent on how to adjust to 
changes and become independent in spite of it.  


Transverse Myelitis IS a Spinal Cord Injury...just not a traumatic one (ie, not 
caused by an accident). 

Laura

http://practical-homeschooling.org
www.laurascoolstuff.com




On Thu, Jun 10, 2010 at 10:34 AM, Janice Nichols  wrote:

  I am getting definite improvement with PT. My pain management doc 
recommended a PT guy that specializes with damaged spines (like us).  He 
knows
  what he is doing.We are taking it very slow because of the severe back 
arthritis I have and the myelitis.  I also do my exercises at home in 
between sessions.
  Can you get a PT especially recommended by your doc because of our special 
problem?  The hamstring problem is definitely from myelitis.
  Janice

  From: Laura Beaudin 
  Sent: Thursday, June 10, 2010 11:14 AM
  To: Janice Nichols 
  Subject: Re: [TMIC]


  Ditto...more bruising would be normal (and often is) if you have decreased 
sensation. As for hamstrings, mine are shortening and despite PT, I can't get 
them flexible again. 
  Laura

  http://practical-homeschooling.org
  www.laurascoolstuff.com




  On Thu, Jun 10, 2010 at 9:04 AM, Janice Nichols  wrote:

Also the baclofen!Good luck and keep in touch in New York.  
Are you going to live there now?
Janice


From: Dalton Garis 
Sent: Wednesday, June 09, 2010 11:44 PM
To: Janice Nichols ; tmic-list@eskimo.com ; Leslie Garis ; Garis, Brooks 
(Darien, CT) 
Subject: Re: [TMIC] 


I haven’t;

But I was in very heavy labor employment before returning to get a PhD at 
aged 35, with lots of broken bones, back fusions, hardware, the works.  So, I 
wouldn’t notice anyway.

As to the hamstring, also, no.  For me the spasticity and convulsive 
attacks when I try to speak during stressful situations is absolutely the 
biggest problem.  And no one’s heard of that.  But I read about this being a 
well documented effect of TM, that is, spasticity in some form, on the Johns 
Hopkins website.  I also have uncooperative legs and hands a lot of the time.

But I can’t keep my left foot up while walking now, so I wear western boots 
with big heels.  They allow me to walk without the need for a foot brace.

Here’s hoping I don’t get spastic in the airport or on the plane so it 
doesn’t get me grounded or thrown off the plane today on my flight back to 
NYC!!!  Hey, just increase the Lyrica, right?

Dalton
Abu Dhabi/New York 



On 10/6/10 8:23 AM, "Janice Nichols"  wrote:


  Got a couple of questions:

  1.Have you noticed more bruising on affected areas of TM than you had 
before TM?


  2.Have any of you had problems with your hamstring since TM?

  Janice

Re: [TMIC]

[Laura Beaudin]

All my docs and therapists are on the Spinal Cord Injury Unit of our rehab
hospital...definitely qualified. It sucks, but sometimes the best efforts
don't work. I was on this unit as an inpatient for 6 weeks last summer, they
were not able to get much back so the time ended up being spent on how to
adjust to changes and become independent in spite of it.

Transverse Myelitis IS a Spinal Cord Injury...just not a traumatic one (ie,
not caused by an accident).

Laura

http://practical-homeschooling.org
www.laurascoolstuff.com



On Thu, Jun 10, 2010 at 10:34 AM, Janice Nichols wrote:

>  I am getting definite improvement with PT. My pain management doc
> recommended a PT guy that specializes with damaged spines (like us).  He
> knows
> what he is doing.We are taking it very slow because of the severe back
> arthritis I have and the myelitis.  I also do my exercises at home in
> between sessions.
> Can you get a PT especially recommended by your doc because of our special
> problem?  The hamstring problem is definitely from myelitis.
> Janice
>  *From:* Laura Beaudin 
> *Sent:* Thursday, June 10, 2010 11:14 AM
> *To:* Janice Nichols 
> *Subject:* Re: [TMIC]
>
> Ditto...more bruising would be normal (and often is) if you have decreased
> sensation. As for hamstrings, mine are shortening and despite PT, I can't
> get them flexible again.
> Laura
>
> http://practical-homeschooling.org
> www.laurascoolstuff.com
>
>
>
> On Thu, Jun 10, 2010 at 9:04 AM, Janice Nichols wrote:
>
>>  Also the baclofen!Good luck and keep in touch in New
>> York.  Are you going to live there now?
>> Janice
>>
>>  *From:* Dalton Garis 
>> *Sent:* Wednesday, June 09, 2010 11:44 PM
>> *To:* Janice Nichols  ; tmic-list@eskimo.com ; Leslie
>> Garis  ; Garis, Brooks (Darien, 
>> CT)
>> *Subject:* Re: [TMIC]
>>
>> I haven’t;
>>
>> But I was in very heavy labor employment before returning to get a PhD at
>> aged 35, with lots of broken bones, back fusions, hardware, the works.  So,
>> I wouldn’t notice anyway.
>>
>> As to the hamstring, also, no.  For me the spasticity and convulsive
>> attacks when I try to speak during stressful situations is absolutely the
>> biggest problem.  And no one’s heard of that.  But I read about this being a
>> well documented effect of TM, that is, spasticity in some form, on the Johns
>> Hopkins website.  I also have uncooperative legs and hands a lot of the
>> time.
>>
>> But I can’t keep my left foot up while walking now, so I wear western
>> boots with big heels.  They allow me to walk without the need for a foot
>> brace.
>>
>> Here’s hoping I don’t get spastic in the airport or on the plane so it
>> doesn’t get me grounded or thrown off the plane today on my flight back to
>> NYC!!!  Hey, just increase the Lyrica, right?
>>
>> Dalton
>> Abu Dhabi/New York
>>
>>
>>
>> On 10/6/10 8:23 AM, "Janice Nichols"  wrote:
>>
>>  Got a couple of questions:
>>
>> 1.Have you noticed more bruising on affected areas of TM than you had
>> before TM?
>>
>> 2.Have any of you had problems with your hamstring since TM?
>>
>> Janice
>>
>>
>

Re: [TMIC]

[Janice Nichols]

Re: [TMIC]Also the baclofen!Good luck and keep in touch in New 
York.  Are you going to live there now?
Janice


From: Dalton Garis 
Sent: Wednesday, June 09, 2010 11:44 PM
To: Janice Nichols ; tmic-list@eskimo.com ; Leslie Garis ; Garis, Brooks 
(Darien, CT) 
Subject: Re: [TMIC] 


I haven't;

But I was in very heavy labor employment before returning to get a PhD at aged 
35, with lots of broken bones, back fusions, hardware, the works.  So, I 
wouldn't notice anyway.

As to the hamstring, also, no.  For me the spasticity and convulsive attacks 
when I try to speak during stressful situations is absolutely the biggest 
problem.  And no one's heard of that.  But I read about this being a well 
documented effect of TM, that is, spasticity in some form, on the Johns Hopkins 
website.  I also have uncooperative legs and hands a lot of the time.

But I can't keep my left foot up while walking now, so I wear western boots 
with big heels.  They allow me to walk without the need for a foot brace.

Here's hoping I don't get spastic in the airport or on the plane so it doesn't 
get me grounded or thrown off the plane today on my flight back to NYC!!!  Hey, 
just increase the Lyrica, right?

Dalton
Abu Dhabi/New York


On 10/6/10 8:23 AM, "Janice Nichols"  wrote:


  Got a couple of questions:

  1.Have you noticed more bruising on affected areas of TM than you had 
before TM?

  2.Have any of you had problems with your hamstring since TM?

  Janice