Hi Dalton, I was not originally a part of this email tree; however I am so
happy to hear that you have found some relief ~ and with mustard, of all
things!My guess is that mustard has many good properties. Here's to no more
seizures! Be well, Linda (Boise, ID) Date: Sat, 8 Sep 2012 21:03:58 -0400
Subject: Re: [TMIC] Looking for input.
From: malugss...@gmail.com
To: jan...@centurytel.net; ibridg...@gmail.com
CC: jcs...@yahoo.com; xbeecla...@gmail.com; j.d...@shaw.ca; tmic-list@eskimo.com
I need to deeply thank someone on this email tree;
She suggested I try taking a teaspoonful of mustard to try to work on these
seizures. Well, it's been 6 days now, and I haven't gotten a seizure since
beginning to take a fat teaspoonful of mustard twice per day.
How do you like that????
THANK YOU !!!!! Please remind me who you are.
Best to all,
Dalton
Dalton H. GarisFlushing, QueensNew York, USAMobile: 718-838-0437Landline:
917-285-2047
From: Janice Nichols <jan...@centurytel.net>
Date: Saturday, 8 January 2012 7:18 PM
To: Bridget Skinner <ibridg...@gmail.com>
Cc: john snodgrass <jcs...@yahoo.com>, Elizabeth Clark <xbeecla...@gmail.com>,
Janet Dunn <j.d...@shaw.ca>, <tmic-list@eskimo.com>
Subject: Re: [TMIC] Looking for input.
Resent-From: <tmic-list@eskimo.com>
Resent-Date: Sat, 8 Sep 2012 16:18:10 -0700
Well at least you have found some answers. That is
always a plus. Let me know how the bladder
retention goes – I think most of us have a problem in some way with
ourbladders and it will be interesting to see what they find with
you. Thank you for sharing – we appreciate
it.Janice From: Bridget Skinner Sent: Saturday, September 08, 2012 5:49 PMTo:
Janice Nichols Cc: john
snodgrass ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com Subject: Re:
[TMIC] Looking for input. I
wanted to let you know as promised that i FINALLY got insurance in place and I
saw my neurologist. I have something called myoclonus and am being treated for
the jerking. The twitching in my fingers is because of my brain knowing how to
type fast and my spine is keeping it to do so. I understand what he told me but
it is difficult to explain. But, the jerking and the twitching are different.
The inflammation from the TM did a number on my spine but at least the jerking
isn't as scary knowing it can, and is, being treated. I feel relieved and hope
the medication works. I have a referral to see someone about my bladder
retention issues also.Thank you for your support.
On Tue, Jun 26, 2012 at 7:46 AM, Janice Nichols <jan...@centurytel.net> wrote:
Bridget,
Are you sure you can’t get into the doc until
August? Have you told them your symptoms and they still
refuse until August? How about seeing your yearly doc you saw
before TM? He/she
could probably get you in way before
August.
I have taken both Neurontin and Lyrica. I
am back on Neurontin after trying Lyrica. Lyrica caused a
lot of swelling in feet and ankles. Some prefer it and have
no problems. As far as the
urinating problem - I think most of us have that
problem. The important thing is that you are able to
completely void your bladder. Do you have problems
wetting during the night or are
you able to feel enough to wake up to go to the
bathroom? Again, the important part is voiding
the bladder.
I think it is important to get into the doc
soon. You can call his office, ask to speak to his/her nurse
and explain what is happening to you. Be adamant that you need to
be seen quickly
after having convulsions/seizures. I would
think that would get their attention, if not, find a doc who will see
you. Your first neurologist will send the info on you to the new
one.
Good luck and please keep in touch with us with your progress with these
issues.
Janice
From: Bridget Skinner
Sent: Monday, June 25, 2012 9:32 PM
To: john snodgrass
Cc: Janice Nichols ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com
Subject: Re: [TMIC] Looking for
input.
Thank
you so much for replying....it's so nice to hear other experiences. I am so
sorry what you are going through and I totally understand the million other
symtoms that come along as soon as you lose one. I too am on 80 mg of
baclofen
(seems like the magic number) and have been for awhile. It is possible,
I guess, that after awhile your body starts to tolerate the meds. They
started
me on baclofen when I was still in the hospital. I was just starting to feel
parts of my legs and it was excruciating pain. (at least I could feel, I
thought). and they gradually increased the baclofen to 80. like i said I am so
scared and can't get in until August 1st to see my neurologist. I try to take
as many precautions as possible not to hurt myself but when I am "thrashing"
or convulsing or whatever it is the left side of my head, in the front, hurts
so bad.
On Mon, Jun 25, 2012 at 8:33 PM, john snodgrass <jcs...@yahoo.com> wrote:
the baclofin took care of my thrashing around. my wife said i was
terrible to sleep with,,said i almost kicked her out of bed. @ 80 mg a day
took that away.....then a host of other meds for a host of other
symptoms,,,,uggg!
From: Bridget Skinner <ibridg...@gmail.com>
To: Janice Nichols <jan...@centurytel.net>
Cc: Elizabeth Clark <xbeecla...@gmail.com>; Janet Dunn <j.d...@shaw.ca>;
tmic-list@eskimo.com
Sent: Monday, June 25,
2012 8:16 PM
Subject: Re: [TMIC]
Looking for input.
A question is coming I promise:
I can relate to all of these different sensations. I live
in texas and am terrified about the cold weather which won't be coming for
quite sometime, but it scares me. Maybe that's because it was so cold when
in was diagnosed and my hands would feel completely curled up in a ball and
while I could pick things up I was unable to set them down.
I take Baclofen for the spastiscity and muscle spasms and I am so
thankful that it takes care of that type of pain. After being paralyzed and
having to learn to walk again the feeling that was coming back was pain I
had never felt before and was so hard to describe.
As far as nerve pain goes I take Neurontin. Has anyone been on
Neurontin and Lyrica at different times and can try to give a description
as
to how one works better than the other.
My problem is that the Neurontin takes care of most of nerve pain but
my hands continue to twitch and when I wake up in the morning my feet and
ankles have such a horrible sensation that I feel like I need to go to the
hospital - it's that bad (i would not go to the hospital again unless I
ABSOLUTELY had to after the time I spent there - a month was long enough
for
me) Has this happened to anyone.
Another question: Has anyone had any convulsions or seizures when they
wake up? Not sure what to call them but whenever I wake up, no matter what
time, My head thrashes forward than back a few times and it almost
seems I have no control over my body. I have to hold onto the ceramic part
of the sink so I won't hit it. I have already hit the bridge of my nose and
chipped a tooth in doing so. I don't know what to call this but I have made
an appt with my neurologist but can't get in until August 1 and am really
scared.
Also, I have a problem urinating. I have to push really hard no matter
how bad I have to go.
In conclusion, I would really like to know what works best for nerve
pain, whether Neurontin or or Lyrica. Neurontin works other than the bottom
bart of my legs. I should be grateful that it works that well, it is much
better than what I went through before the scripts were ordered. But am
curious about Lyrica. My neurologist mentioned it as an alternative but as
I
said the neurontin was working so well(other than the lower half that I
didn't want to change anything.)
Thank you for listening - I know we all have different experiences with
our own Transverse Myelitis and I appreciate your time. Wish I could
find a support group nearby. While I can't donate just yet I will be able
to
do so in September and it will be very worth it.
On Mon, Jun 25, 2012 at 6:50 PM, Janice Nichols <jan...@centurytel.net>
wrote:
I would start with Baclofen first - I think
it works great. You need to take all through the day,
morning, noon and night. It really does help a
lot.
Janice
From: Elizabeth
Clark
Sent: Monday, June 25, 2012 2:36 PM
To: 'Janet Dunn' ; tmic-list@eskimo.com
Subject: RE: [TMIC] Looking for input.
Coincidentally,
someone from a different TM support group recently expressed similar
difficulty and here’s a response that may be of
help…
>
> “Hi all,
> I am new to this
group and was hoping you folks could give me some advice. I am recovering
from transverse myelitis. I was unable to walk for six months and had
complete paralysis from the waist down for three months. I am now able to
walk again, but have severe hypersensitivity to hot and cold and get
stabbing pain in my legs particularly at night. What do some of you do for
the pain? I am looking to avoid narcotics and habit forming medications.
Any advice you have would be greatly
appreciated.”
-----------
“My relief came from flexeral (sp) which helped
the spasms and cymbalta, which helped with the neuropathic pain. When I
get localized brutal nerve pain in my spine (rare), only tramadol
helps.”
From: Janet Dunn
Sent: Monday, June 25, 2012 12:29
AM
To: tmic-list@eskimo.com
Subject: [TMIC] Looking for
input.
Hello Everyone - not
sure who is on here anymore.
I have written in before, several
times in fact, bemoaning the issues that I have with the cold cold
winters
that we get up here in northeastern BC.
Now, it is the heat.
My question is this: does excessive heat cause issues like the cold
does? I have never noticed it before, but this year I quit taking
Lyrica, and I cannot get the spasming in my leg to stop, no matter what I
try. I am wondering if stopping the lyrica has contributed to the
increase in pain, or if it is heat related?
Thanks for your
input.
Janet
