*Oh Naomi, I just hate it that you've had such a tough time. :-( You're
pretty darned amazing to cope as well as you do. Please know that you're
thought of often.*
**
*Hugs,*
**
*Grace *
Hi Roger,
I used Imuran for over two years for NMO. It's an excellent
immunosuppressant. What is your target dose? Mine was to be 200 mgs but
unfortunately, whenever I would try to titer up to 200 mgs from 100 mgs, I
developed projectile vomiting.
Grace
Hello Dalton,
I have many MS friends and among them are those who have experienced TM.
Some prior to their MS diagnosis, and some after. I myself experience
episodes of relapsing LETM (Longitudinally Extensive Transverse Myelitis)
but as a result of having NMO.
Gracie
All right. People who experience a life changing illness, do not all reach
a point of acceptance at the same time. It is a process and there is no
specific time limit or gauge that can determine when that time of acceptance
will come. Asking for *understanding* does not mean that one is
Hi Jeron,
I hear you. Before I was hit with NMO I was a distance walker. It was my
absolute passion and I always did between 6-10 miles every day. It was my
medicine, my high. I hiked, rode horses, worked with animals both domestic
and wild. In one fell swoop it was all over. Very tough
Hi Jim,
If you don't mind, I'm going to post this at the NMO site also. We have a
lot of TMA members there and I'm sure that there are some who would
definitely like to donate.
Yer a peach!
Gracie
Hi Jeff,
I'm not sure, but I think that if the impulses to the pudendal nerve are
intact, that it is possible.
Grace
Gunny, I'm so very sorry to hear this news. Prayers and good thoughts
coming your way.
Grace
Hello Sue,
I've looked at the website and it appears to be just another snake oil
cure. If there were a drug or herb that was guaranteed to treat myelitis
and resolve symptoms, the medical community would have jumped on it.
Respectfully,
Grace
I used 2400 mgs for two years. In the beginning it zombified me and
made me bloat a little, but with time those effects wore off. It helped me
a lot.
Grace
*Kevin, *
*I have been thinking of you today and sending up prayers for your
eventual healing. If you need to talk---pick up the phone and call me. You
and I are old time buddies and I'm always here to lend an ear or a
shoulder. You're not alone. Every single one of us are here for
*I was also told that TM itself is not familial. The verdict is still ouit
on NMO. (Which I have.)*
**
*Gracie*
*Kevin, *
*I am so sorry. There are no words that can ease such a loss. Please
know that we are all thinking of you. *
*Love, *
*Grace*
* *
*Hi Kevin, *
**
*Hospice is a wonderful organization. I think that it would be well worth
your while. *
**
*Gracie *
*It is very possible that she is suffering from recurrent TM, which is rare,
but does happen especially in the context of diseases like NMO, Sjogren's,
SLE. We don't have quite enough of her history to make any assumptions. As
for her spasms, they appear to be tonic Not your usual run of the
OMGosh! Your little Grand Daughters are gorgeous!
XO
GracieP.S. Your son is very handsome, also. :-)
*After nearly four and a half years, I regained patchy spots of feeling on
the bottom of the foot and calf of my right leg. The majority of my trunk
and legs are still numb, but this is a definite improvement. I attribute it
to my use of Rituxan (For NMO), as late improvements are not unknown
*Kev, *
**
*Don't feel bad. Some idiot went and turned me into an unknowing spam-bot a
while back. My alternate email was sending Viagara and sexual aids crap all
over the place. I actually received an add for a bunch of gross stuff from
MYSELF here at my GMail. That's how I found out. It
*Hi Akua, *
*My last Vitamin D test result was only at 4, so I took one 50,000 pill per
week (It's a prescription.) for three months until it was back within normal
parameters. *
**
*Gracie*
*Avonex is interferon beta-1a, one of the CRAB drugs that is used for MS.*
*Hi Barbara,*
**
*I'm another one. My relapsing LETM (Longitudinal Extensive Transverse
Myelitis) is caused by NMO, which is a neuroimmunological inflammatory
disease. Although I have experienced LETM many times, my official diagnosis
is NMO. For me, TM is a symptom of my underlying disease
*Hi Iris, and welcome to the Group!*
**
*Grace*
*Hi Janice, *
*One has to remember that the term Transverse Myelitis, means exactly
that. Transverse: Across or crosswise. Myelitis: inflammation of the
spinal cord. Inflammation of the cord can be caused by several different
disease processes, but it can also be idiopathic, meaning
*Hi again Janice, *
*I'm firmly of the opinion that a patient needs to be educated re: their
own disease process, in order to take a proactive stance re: treatment
protocol and disease management. The best thing that one can do for
themselves is to start pulling up the research. I
Hi Janice,
No offense taken. Just wanted to make sure that Randy doesn't leave us.
He's been a really good friend to all of us and has always been very
positive and supportive.
No harm. No foul.
Grace
*Kevin, *
*We'll all be keeping your Mother in our prayers and thoughts. *
*Grace*
* *
*HAPPY BIRTHDAY EVERYONE!!!*
*I too learned a meds lesson the hard way. A year or two ago, I became
concerned due to my daily Tegretol dose. (1200 mgs per day for paroxysmal
tonic spasms.) So..I decided to cut back my dose on my own without
input from my neuro. Well, I made it to 800 mgs, or so I thought. While
*Where is everyone? The last msg that I got was from Frank, looking for pie
recipes.*
**
*Anyone out there?*
WASHINGTON - Researchers have transformed ordinary mouse skin cells directly
into neurons, bypassing the need for stem cells or even stemlike cells and
greatly speeding up the field of regenerative medicine.
The experiment could make it possible to someday take a sample of a
patient's skin and
*ATLANTA -- *Tests of the first two oral drugs developed for treating
multiple sclerosis show that both cut the frequency of relapses and may slow
progression of the disease, but with side effects that could pose a tough
decision for patients.
Two experts not involved in the studies said the
I took 2400-3200 mgs per day for several years and did fine with it. After
a while, my body adjusted and sleepiness wasn't a problem.
Grace
Hello Janice,
Medical marijuana is just that---marijuana that one smokes. Marinol on the
other hand, is pill form, and Sativex is a mouth spray. Many MS patients
smoke to help them deal with pain and spasticity, as do many in the NMO
Community.
Grace
On Tue, Jan 12, 2010 at 10:26 PM, Janice
Hello Lori,
I don't need much either---just a few hits if it is of good quality.
Grace
On Tue, Jan 12, 2010 at 10:37 PM, Lori Biehler lbieh...@earthlink.netwrote:
In a pill form it is called marinol. That is basically synthetic THC and
I was prescribed it in ’99 and it didn’t really take
*Kevin, *
*I am aghast that they are still badgering you and your Mother about
going into a nursing home. It makes me so angry. Kevin, you are lucid and
in control of your faculties, and as long as you and your Mother are able to
take care of your physical needs (Be it on your own, or
know what he was
talking about! I don't know, maybe ignorance was bliss at that time...
Regina, did you read the articles and were you a bit surprised?
Linda
- Original Message -
*From:* Grace M. grace...@gmail.com
*To:* regina...@sbcglobal.net
*Cc:* tmic-list@eskimo.com
*Sent
*Hi Irish, *
**
*I dug these out of my files for you. There's a lot of info re: Sjorgen's
and TM. Hope they're helpful. If you want any more, let me know. I've got
a ton of papers stashed away in this old computer. If you would like to
research further, just search for Sjogren's and TM
*Hello Regina,*
*Recurrent TM is not *always* indicative of MS. There are very rare cases
(And Linda is one of them) of people experiencing relapsing TM. I myself
experience relapsing LETM (Longitudinal Extensive Transverse Myelitis.) as a
result of Devic's NMO. Linda also has Sjogren's, which
*Hi Frank,*
**
*I love you dearly but I beg to differ. Although a second episode of TM
*can* be indicative of MS, it is not always. Recurrent TM occurs in NMO,
rare cases of Sjogren's, rare cases of Cogans, in conjunction with LUPUS
(Which usually but not always indicates NMO) There are
*Hi Irish, *
*Y**ou've already done methotrexate both oral and injections, haven't
you? Has your doctor conisdered CellCept? (Mycophenolate Mofetil) We do
have some members at Devic's Support that have used it while also using
Rituxan. Are you on a full gram of Rituxan per infusion?
*Found some more shoes that are really comfortable. Go to the *Shoes for
Crews* website. My daughter has a pair of these shoes and I've actually
tried them out and worn them a few times. They're designed for people who
are on their feet a lot, and really *grab* the floor---no slipping and
*Hi Regina, *
**
*They've actually identified the autoimmune antibody that is a marker for
Devic's NMO. Although one can have a concurrent diagnosis of NMO AND
Sjogren's (Which is extremely rare.), I don't think that they are related
with the exception that both are autoimmune diseases, at leat
*Hi Regina, *
**
*They've actually identified the autoimmune antibody that is a marker for
Devic's NMO. Although one can have a concurrent diagnosis of NMO AND
Sjogren's (Which is extremely rare.), I don't think that they are related
with the exception that both are autoimmune diseases, at leat
*Hi Janice, *
**
*I'm still out here. Have just been hibernating---it's a combination of
having eaten too much junk food over the Holidays, and also the cold snap
we're having. How have you been doing?*
**
*Gracie*
Consider it done, Barbara.
Gracie
*Neve pain or neuropathic pain, refers to the type of pain that is being
experienced, not a particular location. *
**
*Neuropathic Pain
*Neuropathic pain results from injury to nerves in either the central
nervous system or the peripheral body. It can be described as burning,
tingling, shooting,
*Oh Bill, I am so sorry to hear this, but am relieved that it was caught
quickly and that they did a stent. Please tell her that I'm praying for a
very speedy and uneventful recovery. Lynn holds a very special place in my
heart, and always will. There is not a day that goes by that I do not
*April of 2005. I was 52.*
On Wed, Dec 16, 2009 at 1:11 PM, Jim Lubin jlu...@eskimo.com wrote:
21 - 20 yrs ago
At 09:35 PM 12/10/2009, Janice Nichols wrote:
Hey!
I have a request. I was talking to my neuro and he was curious to know
the ages
that my website friends were when they
*My MRI's are very long also (Usually about 3-3 1/2 hours.) The length of
time is determined by a lot of factors---how much of the cord is done, what
the doctor is looking for, and radiologic parameters. I always have the
brain, C cord, T cord, and L area done, with and without contrast.*
*Re:
*I too love Facebook. Finding Krissy was great because for the first time,
I've actually found someone else who likes my music. Dare I say that I'm a
*Tool* fan? (Yeh, yeh, I know that I'm too old and should be listening to
Lawrence Welk recordings instead.) Not to mention that Krissy and I
On Fri, Oct 16, 2009 at 8:24 AM, Grace M. grace...@gmail.com wrote:
*Hi Deb, *
**
*Re: Tysabri. I go to a very large teaching and research facility for my
Rituximab infusions, and have a lot of MS friends that are using Tysabri.
Many have had really good results, including a reduction
*Janice, I believe that Deb is talking about her MS symptoms. *
**
*Gracie*
On Fri, Oct 16, 2009 at 7:44 PM, Janice jan...@centurytel.net wrote:
What symptoms are we talking about? Janice
- Original Message - From: Deb Monteleone aiki...@optonline.net
To: TMIC
*Mindy, *
**
* You have a beautiful voice! *
**
*Hugs, *
**
*Grace*
.
*Hi Linda,*
**
*I wear garden shoes year round, rain, snow, sleet or hail. Mine are called
Sloggers and are relatively inexpensive, and come in a lot of different
colors. I've stocked up on them to make sure I've always got a pair. They
are like walking on Memory Foam, and don't aggravate that
:
*Hiya Irish, *
*The dishwasher, LOL! I either throw mine in the washer on gentle, or
wear them into the shower and scrub them while I'm in there. I've got
several pairs of each color. :-) *
*XOXO *
*Gracie*
*Hiya Kevin, *
*Yes, Gunny's a great guy and, as you can see, a BUSY guy, but he always
takes his time out to help, if it's needed. He's been instrumental over the
years in helping several of our NMO members to get into Hopkins quickly, and
it's most appreciated. I'm looking forward
*Hi Jill, *
**
*I have a friend with Systemic Lupus. She does chemo--Rituxan (Rituximab)
which I also do, though for NMO. Yes, she has had multiple TM attacks, but
her case is severe. Not all cases progress like hers has.*
**
*Gracie*
*Grace Mitchell SW PA Devic's Support *
On Wed, Sep 16, 2009 at 12:54 PM, Cindy McLeroy
cindymcle...@socal.rr.comwrote:
Cindy McLeroy
Support group leader for Southern CA
Reply direcly to me if you are interested in joining our group. We've been
going strong for almost 7 years.
*I've taken it for years and no it doesn't make a difference. MS is a
totally different disease process than idiopathic TM, though MS patients can
certainly present with TM. *
**
*Grace*
On Sat, Sep 12, 2009 at 7:53 AM, Jill Z jillybean60...@yahoo.com wrote:
I wonder if this could work for
*Hi Gilly. *
**
*Isn't it a great feeling to meet someone else who has TM face to face? I
got to meet two of my NMO friends in the flesh, and it was wonderful.
Someone else actually *gets it*, you know? *
**
*Many hugs, and see ya at Facebook, *
*Gracie*
G'day All,
It's been such a
*Hi Janice, *
**
*I think that we have to remember that just because one has TM doesn't mean
that one is immune from all of the other diseases and disorders that are out
there. Hypertension, diabetes, cancers, sudden illness, accidents, etc.
Then too, we age, and with aging often come other
*I am so sorry for your family's loss. *
**
*Grace*
On Thu, Sep 10, 2009 at 12:06 AM, cjb...@aol.com wrote:
Jim left his earthly pains and frustrations behind yesterday evening
about an hour after being transferred to a hospice house in Davison
Michigan. Our children and grandchildren
*I think that our treasurer should set our club dues at the rate of at least
four BM's a month. Nothing less. Let's run it past our President, Doc
Frank.*
**
*Gracie*
*Hi Frank, *
*I have significant differences in nail texture, growth and thickness. I
believe that in my case, it's attributable to all of the meds that I take
including chemo. Hopefully, someone else will have some input for you. *
*Grace*
*Prayers and good thoughts are coming Carol. Stand strong. *
**
*Grace*
*ROFL! Janet, you're a hoot!*
*From:* Patricia Cooley [mailto:patticoo...@wi.rr.com]
*Sent:* September 8, 2009 6:53 AM
*To:* 'Janice'; fr...@franksheldon.com
*Cc:* tmic-l...@eskimo.net
*Subject:* RE: [TMIC] BM'ers Club
JANICE AS A MEMBER OF THE BM’ers WELCOME ABOARD. ONE OF OUR
*Hi Janice, *
*I**t will be placed in my chest, and will be totally under the skin, so
I'll be able to bath, swim, and the whole nine yards. I've managed to find
a good number of people who have one, and all of them seem to like it.
Thanks so much for the input. *
*Hugs,*
*Hi Robert, *
**
*I took 60 mgs of Cymbalta per day for about two years. It didn't really
help with the banding, pain, or sensory symptoms, but it was great for
depression. I didn't have any side effects.*
**
*Gracie*
*Hi Guys, *
**
*My infusion nurse discussed the possibility of having a port inserted for
my Rituximab infusions. Does anyone here have one, and if so, what has your
experience been? My veins are a really hard stick and blow easily. I've
read about using a port, and it sounds quite innocuous
*I'm joining too, Pattie. Do you think that Frank would agree to be our
President?*
**
*Gracie.A BM'er since 2005!*
*Guys, I was just so happy to see that others have to use the digi-stim
method. It gets real lonely out here. We gotta start a club! ;-)*
-Original Message-
From: Janice jan...@centurytel.net
To: tmic-l...@eskimo.net
Sent: Tue, Sep 1, 2009 2:04 am
Subject: [TMIC] Digital
*I'll be sure to remember her and send up some prayers for the family.
September 9 is also my son's birthday, so I know that I won't forget.*
On Mon, Aug 31, 2009 at 11:52 PM, Barbara H. barbara...@gmail.com wrote:
As I was preparing the birthday list for this month, I saw that Sept. 9 was
Pam
On Tue, Sep 1, 2009 at 11:19 AM, Grace M. grace...@gmail.com wrote:
*Guys, I was just so happy to see that others have to use the digi-stim
method. It gets real lonely out here. We gotta start a club! ;-)*
-Original Message-
From: Janice jan...@centurytel.net
To: tmic-l
*Hi Lynne, *
*Stewed prunes sometimes work for me also. Whenever I am hospitalised, I
usually have them twice a day. Since I'm now mobile and out and about
though, I don't use them quite as often as I tend to have accidents. If I
can be sure that I will not have to go out, and that
*Hi Regina, *
**
*I won't be getting it as I attempt to avoid anything that is invasive, even
a simple shot. I've been kept in an immuno-compromised state for the last
four and a half years. Luckily, I've only been really ill twice, both
times with pneumonia that responded well to oral
*Actually Ella, clipping relaxes the tendon. I previously took care of a
cerebral palsy patient who had developed horrible contractures of her legs
and arms. Eventually they did clip her leg tendons, which helped to prevent
the contractures from becoming even worse. *
**
*Respectfully, *
Definition
Tenotomy is the cutting of a tendon http://www.answers.com/topic/tendon.
This and related procedures are also called tendon release, tendon
lengthening, and heel-cord release (for tenotomy of the Achilles
tendonhttp://www.answers.com/topic/achilles-tendon
).
Purpose
Tenotomy is
*Jim, this is absolutely awesome! What did your Mom say?*
**
*Love,*
*Gracie *
On Mon, Aug 24, 2009 at 11:48 PM, Akua a...@artfarm.com wrote:
ALLPRAISES!
This give me hope, Jim Thank you for sharing!
Akua
The past two weeks I started feeling a tingling in my right lower back.
I'm so sorry to hear this news. You're in my thoughts and prayers.
Gracie
Jude,
TM is the result of spinal cord insult , and being a quad can be the
result of TM. Our own Jim Lubin is a quad. There are other quads here at
this site whom I count among my friends. I am aghast at your statements and
extremely offended. I myself do not have TM either, but
*Dearest Lynn, *
*Thank you so much for your most kind words. You know, several months
before you helped me, I had totally given up the advocacy effort, leaving it
all in the hands of our founder, Tim Mulvihill. (Deceased since March of
2008, and now the angel on my shoulder.) I was
*Hi Frank, *
**
*Your presentation was also Brown Sequard, wasn't it? Or am I mistaken? *
**
*By the way, how is that hand and wrist?*
**
*Gracie*
*Hi Janice, *
*There are no fast and hard set rules about how much of the body is
affected by any lesion. In my case (NMO) my lesion encompassed almost the
whole of my Thoracic cord. I presented with Brown Sequard paralysis (Often
referred to as Hemicord.) and I have been hit not
*Hello Alton,
NMO is an autoimmune CNS disease that causes relapsing LETM (Longitudinal
Extensive Transverse Myelitis) in 90% of patients, relapsing ON (Optic
Neuritis), and in 62% of patients, eventually brain lesions. It's a very
serious disease and the prognosis is poor. Within five years,
Mindy,
Technically, Frank is correct. Many neuros do not like to use the term TM
but refer to it as simply myelitis instead. Yes, you are correct that an
attack can be acute, or sub-acute.
I suffered from acute myelitis, however my lesion was not Transverse (It was
Brown Sequard) and thus
Hi Janice,
In my case, the lesion was more pronounced on one side than on the other,
which left me paralyzed and without feeling on one side, and paralyzed with
minimal sensitivity on the other. To this day, one side is much weaker than
the other. The lesion began at T2, and as is often common
*Hello Janice,*
**
*Yes, a small lesion can affect a relatively small part of the body.
Myelitis simply means inflammation of the spinal cord. Transverse, means
*across*.*
**
*Grace*
*Hi Regina, *
**
*I use Amantadine for severe fatigue. It's an anti viral that is also used
for Parkinsons patients and neurological fatigue. It works like a charm and
is so much cheaper than Provigil. *
**
*Gracie*
*It depends on the underlying cause of her TM. If it is something like NMO
(As in my case.) then immunosuppression via chemo would be something that a
neuro would definitely consider. If it is idiopathic---then, no.*
**
*Respectfully, *
*Grace* *(NMO since 2005)*
*Your paintings are beautiful Wim!*
**
*Gracie*
*Happy Birthday Everyone!!!*
**
*Gracie*
*Todd did not intentionally do anything wrong. He wrote an extremely
supportive post to Naomi. He in no way disparaged this list, or anyone on
it. I've known Todd since I first became ill and he has never been ANYTHING
but good to me, and I have never seen him post anything negative to anyone
*Jim, *
**
*You have me laughing so hard now. :-) I'm the same way, though with me
it's Mahjongg and the strategy games. If your Mom ends up being too late
with dinner, just call me and I'll send over a Pizza.*
**
*You're a peach!*
*Gracie*
On Sat, Jun 27, 2009 at 7:40 PM, Jim Lubin
*Hi Jim, *
*I'm afraid to even start Farm Town---I KNOW I'll get addicted...as it
is, I already need to start attending Mahjong Addicts Anonymous
meetings ;-) Gracie*
*I can't believe that I am going to reply to this, as it's an issue that I
just try hard to avoid, but. okay, so here goes. During my first NMO
hit, I lost all feeling *there*. At first I was hopeful that it would
slowly come back, but my second bad hit sealed the deal. I can remember
lying
*Gunny, *
**
*I always knew that you were a wild-man. ;-) *
**
*Hugs, *
*Grace*
Great idea, Trudy! I would also like one! I have one of Barbara
Mandrell, Elvis (I'm sure is from his fan club and a copy), the middle boy
from Father Knows Best, and Andy Griffith. Does that show my
*Hi Naomi, *
*Very well said. It's like that for NMO patients also. Although we too,
suffer from non traumatic SCI, our needs are very different than the typical
TM patient. Our treatments differ greatly---many of us are on heavy duty
anti-rejection/immunosuppressant drugs, and many
*The Transverse Myelitis Network is another great way for patients to
communicate and compare notes. Many of the TMIC members participate there.
Our own Marieke is one of the administrators. I advocate for NMO, and work
with Sandy Siegel and the TMA crew, and I also have my own site, of
*It's just a feature of mail programs that notifies the sender that their
mail has been received and opened. I only use it for business
correspondence. *
*Grace*
* *
*Still praying for Jim, Carol. Keep us posted.*
**
*Hugs,*
*Grace*
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