I think scientists need to hear about this!!!! How wonderful.
Janice
From: Dalton Garis
Sent: Saturday, September 08, 2012 8:03 PM
To: Janice Nichols ; Bridget Skinner
Cc: john snodgrass ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com
Subject: Re: [TMIC] Looking for input.
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. Garis
Flushing, Queens
New York, USA
Mobile: 718-838-0437
Landline: 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 our
bladders 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 PM
To: 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
