*It's amitriptyline, or Elavil. Many of my Devic's members, use it for
fatigue.*
**
*Grace*
crossed on that one.)*
**
*Grace *
*Hi Linda,*
**
*Yes, Amantadine helps with tremors. That's one of it's anti-Parkinsonian
properties.*
**
*Grace*
yet.*
**
*Grace.Devic's Support *
---but was too
stubborn.) You absolutely have to protect the skin's integrity.*
**
*Love,*
*Grace*
Hi Sal and Sandy,
They always do everything whenever I go. Brain, C Spine, thoracic, etc.
They do one without contrast, and one with. I get one every 6 months now.
Grace
Has anyone heard from Natalie M.? I'm hoping that all is well. Please let
me know if you have heard from her---I've been concerned.
Grace
Jude, has asked me to forward this mail to you.
Grace
**
**
*Hi All,*
**
*Well, this is it. I am having major comp. problems and don't know if it
will be fixed in time for me to get back to you before I'm off to OZ.*
**
*I am going into a facility to build up my body, get good and strong
*I wanted to write and thank all of you who have sent me private emails re:
the Devic's patient from the Netherlands. Currently her neuros are
conferring with the Mayo Clinic and her present treatment has been
affirmed. Yesterday, she was put on a trach, and was able to speak for the
first
*Hello,*
**
*I just received this notification from NORD and thought that it might also
be helpful for people here at the TMIC List.*
**
*Grace*
-- Forwarded message --
From: NORD [EMAIL PROTECTED]
Date: Nov 16, 4:46 pm
Subject: Social Security and Rare Diseases
To: Devic's
*Although attendance at the hearings is by invitation only, telephone lines
will be set up in order for the public to listen in.*
*Grace*
right here
in our midst. (That would be you. :-) *
**
*Thank you,*
*Grace*
*Hi Sal,*
**
*Using contrast enhances the lesions. They usually do one with, and one
without, for me---then they compare them.*
**
*Grace*
. *
**
*Hugs,*
*Grace*
a heads up. Helping those
with this horrid disease is what I'm all about right now---it keeps me
going. *
**
*Hugs,*
*Grace *
that it's CNS.* and shipped
me off to Pittsburgh in an ambulance. Of course they found the cord
lesions and diagnosed it as idiopathic TM. Eventually, it turned out to
be relapsing Devic's. *
**
*Your experience is not uncommon, so don't beat yourself up over it.*
**
*Grace *
to the place that it needs to be to cope with the implications
of this disease. *
**
*Grace *
*What wonderful news about Netta, Barbara! Young and engaged..can I
even remember back that far? LOL.*
**
*Grace*
.
Frustrating *
*Grace*
not actually
done any real hopping. It is truly the oddest sensation. One's legs and
feet, actually feel like they have hopped whenever they haven't. I get so
frustrated!! One day, this old girl WILL hop, come heck or high water!!*
**
*Grace *
anytime soon. Just
managing to take off, it felt like my legs weighed 1000 pounds each, and of
course once I did *take off*, my skipping mechanism pooped completely out
and I had to make a quick grab for the couch. Sheesh!*
**
*Grace *
--
*Congratulations Marieke!!*
**
*Grace*
an
indeterminable number of new myelitis attacks. For recurrent TM and Devics,
immunosuppression or chemo is the rule.*
**
*Grace *
buddy to the left of me, a very personable young man, burst out laughing and
informed me that on his *good* days, he could do MUCH better than that!
It's a very special sense of camaraderie.*
**
*Hugs,*
*Grace *
. I
wear a Life Alert necklace, but will not use it unless I actually hurt
myself. *
**
*Grace *
*Hi Sal,*
**
*They keep my immune system suppressed also, so that it will make another
attack less likely. I'm not sure how that applies to ADEM, though.*
**
*Grace*
- Original Message -
*From:* sal r [EMAIL PROTECTED]
*To:* tm tmic-list@eskimo.com
*Sent:* Wednesday
them. Isn't it
just the oddest feeling? Kind of like *My legs! My legs! Where in the
world did I put my legs?* I've gotta laugh though, after all, it is just a
little funny. :-)*
*Grace*
removed and
will have to go the dentures route. I do know others who have used implants
with great success. *
**
*Grace*
and your
recovery are miracles---but I think that you know that. :-)
Grace
, if any of them had heard
from her. You are so very lucky to have an Aunt who treasures you so much.
:-)
Grace
in
quite the same way---and that's okaye. Jude was simply attempting to
protect some of the more vulnerable members. No harm was meant.*
**
*Grace *
about
all I eat anyways, but losing a few pounds is still almost impossible.
Sigh.it's so frustrating.
Grace
? There is
some speculation now, though I do not necessarily agree, that Devics is more
closely related to ADEM than previously thought. Of course, that would not
explain the relapsing patients.Hope this post helped.
Grace
medications, I will relapse again, and the hope is to minimize the damage of
the next acute attack. I'm just not brave enough to take the risk.*
**
*Grace *
solumedrol didn't work, so we did plasmapharesis and it halted it. I use
Rituxan infusions now. I've regained almost all of my vision except for the
left peripheral which is gone for good. I've never heard of nsytagmus being
a symptom, but I could be wrong. Let me know.
Grace
be wrong.) *
*Grace*
**
*Heya Ms. J,*
**
*Of course things fell apart!! Surely you did not think that your two
favorite cohorts would remain idle during your absence? It's time to get
back to business Sweetness.don't forget that you, Frank, and I have a
soiree to attend.;-)*
**
*I love you and miss you and
*Hi Patti,*
*I take my Cymbalta as soon as I wake up in the morning. I've never had a
bit of trouble with it. It's the only drug that has helped me with my
depression and it has the added benefit of helping with the neuropathic
pain.*
**
*Grace*
*Hi Ann,*
**
*I'm here and was wondering the same thing. Hope all are well.*
*Grace*
*I don't get flu or pneumonia shots either. Because my TM was a result of
relapsing Devic's, it's just not a risk that I am prepared to take. That
being said, however, I do have several friends with this disease who have
gotten flu shots with no ill results. *
**
*Grace*
exercise that I
am sure they must have special benches and what not. *
**
*GraceP.S.I'll start checking online for you and will let you know
what I find out.*
*Sal,*
**
*Sent you some good links for the type of equipment you mentioned. The
second one looks very promising. Am checking now to see if I can find any
used equipment.*
**
*Grace*
*Hi Cheryl,*
**
*No, I haven't received any via the TMIC list, but I do have to clean the
Devic's Support site's unmonitered msgs page every day, because it is just
filled with this garbage. I would die if any of that crap ever got
through and posted.*
*Grace*
in my
files (If I didn't lose it again.) If not, I know that someone else here at
the list will have it. And Sal, Welcome Back!!:-)*
**
*Grace *
*There is recurrent Transverse Myelitis. You can find info about it at the
TM Asosciation's message boards.*
**
*Grace*
--
Take the Internet to Go: Yahoo!Go puts the Internet in your pocket:
http://us.rd.yahoo.com/evt=48253/*http
to
go along with the disease.
Grace.
:
*Kevin Wolfthal [EMAIL PROTECTED]* wrote:
Regina,
Very good question! I wish I knew.
The last neurologist said I was on too many meds. I disagree. I'm on two
BP meds, xanax, and an 81mg aspirin a day. I saw a program recently,
discussing how
, and though
I have not had any drastic side effects, I have noticed a very insidious
increase in fatigue.
But hey, my friend, it's so good to *see* you. It'd be nice if you'd stay
in touch so that I don't lose track of you. :-)
Grace
an invitation (And that's fairly often.) they start buzzing about me being
*depressed*. Kevin, I'm not depressedjust incredibly tired the
majority of the time. Seems like I'm dam*ed if i do, and dam*ed if I don't.
*
**
*Grace *
*This is just beautiful. Thank you so much for posting it.*
**
*Grace*
it yet. Maybe if
we all bombard her with mail?*
**
*Grace*
**
However, it does say at Snopes, that using the number #77 is true in some
states, and false in others.
Grace
On 9/17/07, Rick B [EMAIL PROTECTED] wrote:
Please don't forward this stuff. Someone may actually believe it. It is an
urban legend and not accurate.
http://www.snopes.com/horrors
Hi Natalie,
I'm so glad that you are on the mend. Be sure to take care of yourself and
don't try to overdo.
Hugs,
Grace
srote:
s
--
Moody friends. Drama queens. Your life? Nope! - their life, your story.
Play Sims Stories at Yahoo! Games.
http
That's very good advice, Jude. Thanks for thinking of it. I often try to
stretch without even thinking of the possibility of injury---and here I sit
with osteoporosis. It scares me a little thinking of some of the physical
chances I have taken.
Grace
*Please, everyone, be careful
me to fall.
Grace
that
all went well.
Grace
--
See what's new at AOL.com http://www.aol.com/?NCID=AOLCMP0030001170and
Make
AOL Your Homepagehttp://www.aol.com/mksplash.adp?NCID=AOLCMP0030001169
.
**What? You two are whooping it up on your back porch whilst I sit down
here in lonely southwestern PA, without even a grape to sniff? Oh.the
cruelty of it all
Grace
On 9/11/07, Bob and Sue Mattis [EMAIL PROTECTED] wrote:
Someone looking for Phran3que? He's with me. We've
all going.*
*Your friend,*
*Grace*
Has anyone heard how Natalie is doing? I'm hoping and praying that her
surgery went well.
Grace
I think that they must have Ann. I already found him...;-)
Grace
, whenever I
turn around..the poor young fellas scream and make the sign of the cross
with their fingers. Go figure?*
**
*Grace*
Ladies,
Don't you think that it's more fun for all of us to just fantasize about
Frank's striking good looks? Think of itwhat's George Clooney for you,
might be an aging Clint Eastwood for me, and a steamy Brad Pitt for someone
else. Why burst our bubble? ;-)
Grace
I just spoke with her, and she asked me to let the list know, that she has
experienced an exacerbation that has affected both legs. She is in good
spirits, and will be having a meeting with her physicians tomorrow. Please
keep her in your thoughts and prayers.
Grace
*Hi Heather,*
**
*Thanks for asking about Chloe and her friend. They're both doing well.
School's started so they are both preoccupied with that. The little boy
won't be playing football too soon---damaged ribs and cartilage, but he's on
the mend.*
**
*Grace*
Frank,
I used to love Amways products. Soap, cleaning aids, just everything. Their
degreaser was fantastic. Bought it for years, But once we moved, couldn't
find a salesman. I'd buy it in a heartbeat if I knew where to find it.
Grace
.
Hi Gary,
I use Tegretol. 800 mgs per day. Works like a charm. I do have to get
regular liver function workups, though.
Grace
Several times since becoming ill, I have ended up being so constipated,
that it involved an extremely unpleasant *removal* process. Not fun. Now I
try to be a lot more careful with what I eat, drink etc. Been there, done
that, don't wanna do it again!
Grace
what can actually be considered TM, as in the regular sense. Devic's is a
totally different disease process. We know that for sure, due to the
actual pathology of the disease and since the discovery of the antibody.
Grace
They ended up having to life flight her, but all is well. Some heavy cuts,
lots of abrasions. I had a really hard time getting to the accident
scene---they told me *No*. I told them *YES!*, and my neighbor gunned the
engine and off we went. The car brought me to my knees. She's an
thought not to be the case, but the diagnostic criteria has changed to
include them. I believe the number for nonspecific brain lesions is around
60% now.
Grace
drugs stopped working, my neuro decided that it was my best
shot at lengthening the amount of time between attacks and also making them
more manageable wheneverthey do occur. Hope this helps.
Grace
directly Sorry
for posting this here, but I lost your address also. (No one has ever
accused me of being the sharpest knife in the drawer.)
Grace
wishes. It's so
appreciated.
Your friend,
Grace
and I
will be going down shortly. Say a prayer for them both that there are no
serious injuries.
Grace
Hi Frank, Kevin,
In my case, two lesions (Both LETM's) led to a definitive diagnosis of NMO.
There are several other factors to be considered whenever leaning towards
MS. One is the presence/absence of oligoclonal bands in the CSF.
Grace
.
Your friend,
Grace
Hi Hilded,
I got your mail. Did you get mine? I never see any of my initial posts
online so am not always sure if they go through or not
On 8/21/07, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote:
I get mail from the list all of the time but when I posted to the list, I
got an email saying I
buddies are hoping to be
offered that feature. That's good news about no infections!!
Grace
Hi Natalie,
I'm so sorry to hear that it involves another surgery, but am convinced that
it will indeed improve your life. I've heard some very positive things
about this procedure. Try not to worry, and come back to us as soon as you
can.
Love and prayers for you. always.
Grace
into a brawl. I don't want to see your mug shot on CNN!
Love you much and will miss hearing from you.
Grace
. 8/@yahoo.com
,
[EMAIL PROTECTED] wrote:
Hello Natalie,
You will be in my thoughts and prayers. Please let us know when you can
about your condition. Or, you can have your
The bands are great. I've got them in all different colors and
strengths. If you use them faithfully, they do help with strength.
Grace
Thank you so much. That's the map that I was looking for. You're a
Sweetheart.
Grace
to mail.
Grace
--
don't.
Grace
On 8/9/07, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote:
I GOT A E-MAIL FROM SOMEONE CALLED ANTI-FAN. I HAVE NEVER SEEN A POST
FROM THAT PERSON BEFORE.
SHE OR HE SAID I HAD NO CLUE ABOUT INSURANCE. WELL I TOLD HER WHAT I KNEW
AND I AM ON COMMITTES ABOUT INSURANCE. THAT I WORKED
and
assume that I am (Either a drunk or mentally deficient.), whenever they
don't know me, or my circumstances? And no, I will never forget lying on
that floor in the local Walmart. You're right, people are generally
insensitive to our inner pain.
I love you.
Don't forget to mail.
Grace
--
Immediately following my NMO diagnosis, my PCP totally educated herself re:
the disease. She explained to me that during her neurology rotation, they
only took a cursory look at it---the professor told them that they would
never see a case in their practice. She's been great.
Grace
to a compromised
brain stem. The goal is to lengthen the time between attacks, and to
minimize the severity whenever the recur. It's no picnic. :-(
Grace
*Grace M. [EMAIL PROTECTED]* wrote:
Hi Natalie,
The most important thing that we can do for ourselves---is to educate
ourselves
a disease with a
more predictable course, maybe it would be easier for me to wrap my head
around it. Ah well, life goies on.
Grace
.
*Grace M. [EMAIL PROTECTED]* wrote:
Hi again Natalie,
It's a chemo infusion. My TM and blindness episodes were caused by
Devic's disease. I
Oh my gosh, Frank. I am so thankful that I didn't stay in Canada. I came
pretty close to it---had planned to get married and apply for immigrancy.
Came back here because of my kids, and also to be near my old neuro. I'm
glad that I did.
Grace
.
Grace
breakthrough
spasms. I've learned my lesson about trying to do things that are beyond
me.
Grace
!---and also
two emergency pull cords, so I guess that I have some little measure of
safety.
Grace
Grace M. wrote:
Oh Priscilla, tell me about it!!! I looked just like a big ol
middle aged Raggedy Anne (Or an elderly Bette Davis) lying there
in the bushes. And you know
if he had managed to
hold onto me and I had pulled him out of his chair? It really could have
been a catastrophe. I would much rather have taken my chances at dodging
traffic than to have caused him any additional pain.
Hugs,
Grace (In PA)
and look
right now.
Grace
PeoplePC Online
A better way to Internet
http://www.peoplepc.com
Hi Natalie,
Sorry to hear that you're having such a time of it with the pain. I hope
that things will be resolved for you soon.
Feel better,
Grace
--
Got a little couch potato?
Check out fun summer activities for
kids.http://us.rd.yahoo.com/evt=48248/*http
Me either.
Grace
On 7/24/07, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote:
Havent received mail in 3 days. Whats up??
--
Get a sneak peek of the all-new
AOL.comhttp://discover.aol.com/memed/aolcom30tour/?ncid=AOLAOF0002000982
.
Hi Heather,
It's rainy and cool here. The dog and I are just lazing around, enjoying
the coolness. Of course, since I have been alerted to the occasion of
Frank's vacation, it will be hard for me to go on, as I am sure that it will
be for others. ;-)
Grace
Hi Kevin,
My reflexes are off in my right leg. Brisk is the term that the neuro used
for it. For a long time after the onset of illness, I had missing
reflexes. It's my understanding that this is all part and parcel of the
disease.
Grace
I'm not sure that my mails are getting through to the list. Some personal
ones that I have written are now lost in cyberspace. Please let me know if
this goes through.
Grace
was
at. Getting up onto that stool was just plain STUPID! Well, I'm gonna go
lie down for awhile. My entire arm is throbbing.
Grace.
into a 75mg? At any
rate he told me not to panic as for the time being I can uses samples.
Grace
On 7/13/07, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote:
Hello,
I also take different dosages at different times of the day, but it's the
Neurontin. In order to satisfy the insurance company
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