As if I didn’t have enough problem with the residual stuff from MS, the neuro
is now checking me for myasthenia gravis. Weird symptoms affecting my eyes.
Difficulty in focusing, droopy one lid, etc. Would like to hear from some of
you who live with this diagnosis, and how you handle it.
Provigil never worked for me.
Hi everybody,
I visited a friend who had surgery Monday on her hammertoes and bunions (both
feet).
She told me that she has no patience to wait before she recovers, drives again,
and gets to wear her designer shoes. The waiting is driving her nuts, she said.
In response, I said
Any advice regarding these gadgets.
Thanks!
, heyjude48...@aol.com heyjude48...@aol.com wrote:
From: heyjude48...@aol.com heyjude48...@aol.com
Subject: Re: Returned mail: see transcript for details
To: regina...@sbcglobal.net
Date: Thursday, September 8, 2011, 2:55 PM
Hey Regina,
Did you receive my last entry? If not, I am still here, but do
Who is this Laura?
Have you also been getting this email?
R
--- On Tue, 5/31/11, laura.beau...@gmail.com laura.beau...@gmail.com wrote:
From: laura.beau...@gmail.com laura.beau...@gmail.com
Subject: [TMIC] Hey
To: tmic-l...@eskimo.net
Date: Tuesday, May 31, 2011, 11:59 AM
Hi I just wanted
Hi everybody,
Please check the Vanity Fair article of JANUARY 11, and read the Deadly
Medication piece. It is scary and we should all be aware that the
pharmaceuticals' clinical trials are a joke. And that the FDA doesn't seem to
care. We are constantly exchanging our experiences with a
Did anyone ever hear of this therapy?
Okay, you guys ...
I've been reading all your OTs wondering when Frank would send you one of his
funny no, no reminders.
And here I am doing it too.
Anyway, consider the following a cerebral exercise, devoutly to be needed by
many of us, especially me. Do it when you have not much
I met a woman at the gym also afflicted with TM. The pain she suffers is close
to a ten and yet, she walks with a cane and can do Tai Chi (sp?). I tried, but
my balance is so bad, I just cannot do it, and dropped out of that class. The
point I'm making is how differently TMers function. My
I live exhausted every day from the moment I wake up to the moment I go to bed.
I've tried all the meds my doctors suggested to no use.
Came to the conclusion that it makes no sense to subject myself to side effects
when pills are useless.
Bottom line, we live with the residuals of TM's
Hi everybody,
I just read the post I sent this morning and must apologize for it.
It's more depressing than I meant it to be.
Surely, there is lots we can do to help with fatigue.
Seriously, I'm sorry.
R
I haven't heard anything about the Austin, TX symposium.
Any comments? Was it productive? Can we access any reporting online like we
did before?
Does anyone take Marinol for pain?
And what's the difference between Marinol and Sativex?
And, if Marinol is approved in the U.S., how come I never see it on the list of
meds you list that you take from time to time.
Just curious.
R
Please send some of that heat you keep talking about my way. I am FREEZING!
July was the coolest month since I'm not sure when, but I know it's been a long
time.
Speaking of meds., I only take Neurontin for the pain. I know Frank doesn't
think much of it, but I don't want to take Lyrica and
Anyone familiar with this company?
I've been taking Oscal +D for calcium supplement for many years. At Costco
last week, I was told their pharmacy discontinued the product. A few days
later, I read of warnings that they have caused heart attacks. Is anything
safe to ingest anymore!
Two
Frank,
Do you know why Sativex is only available in England?
luck!
Regina
Hi Jill,
I took it years ago for depression and OMG, it was awful!
The best way I can describe it is that I felt stoned. It was called Elavil
then. In those days, they gave it to people in nursing homes to keep them
quiet. But everyone reacts differently, so try it and let us know what
Hi Barbara,
I reread your answer to Randy with interest.
You were told you had TM and then that you didn't.
But what puzzles me is that your neuros tell you that the lesion isn't there
anymore.
That must mean that you had it in the first place, doesn't it?
Lesions in the spine from my
Linda,
I don't like the sound of recurrent TM.
Frank explained some time ago that one ocurrence is TM, the second one
indicates MS. Perhaps I misunderstood.
Did your doctor tell you that you had recurrent TM?
How can we tell that we have it without an MRI?
Caring for you, Linda and always hoping
Linda,
Ever since I was diagnosed with Sjogren's, I had had to use eye drops often and
regularly. I wonder if it causes more than just dry eyes.
You say that you are glad that you didn't know the condition could lead to TM.
I wouldn't even have known what TM was. But as I noted earlier, I
My doctor suggested I take alpha lipoic acid.
Anyone in the group taking it?
I had never heard of it and am curious to hear your comments.
Many thanks!
R
yourselves? Doesn't matter. Enjoy your birthday!
Regina in Marin County, CA
More interesing comments about conquering constipation.
What do you thing?
- Forwarded Message
From: The Washington Post newslett...@email.washingtonpost.com
To: regina...@sbcglobal.net
Sent: Tuesday, September 15, 2009 8:18:01 AM
Subject: Lean and Fit: Flavorful Ways to Get Things
I guess Frank isn't sending his grandmother's prune souffle recipe,
so..
To anyone interested in baking one, I just googled how to bake a prune
souffle and the recipe popped up. I feel less and less inclined to bake but
if anybody does and tries it, please share your
Good morning everybody,
There was a lot of discussion in our group regarding vaccines a couple of years
ago. It had been suggested that among other things, TM could be caused by the
flu, a virus, whatever. Some of us were convinced of that and refused to take
the vaccine. I haven't had one
Jim,
I watched the video in awe. The next step is to move more than the thumb
without pain. I hope so for you and more. Thanks for sharing the good news.
R
I Googled Glucosamine yesterday and found it interesting. And then, I ran into
a recent article in the Los Angeles Times www.naturaljoint.com stating that
well, I think it's best your read the article if you are interested. It's
about a natural product that gives relief naturally,
Please ignore my comments/question regarding the spinal cord.
I just realized I must have been in a state of ___ I can't even think
of an adjective to describe the dizzy state I've been in today.
It's been a strange day. This morning, instead of adding milk to my cereal, I
poured it in
Dearest Jude,
As you well know, my faith is shaky. I'm not sure anyone is busy listening to
our prayers.
But your belief is strong enough to rub off on me a bit, and I promise to do
as you so sweetly request.
Take care dear friend.
R
Did I read correctly?
Is it possible Dr. Kerr will prescribe Rob medication for constant fatigue?
and that it may work?
If it does, I'd jump for joy if I could do it without falling.
I've accepted getting up in the morning just as exhausted as I was when I went
to bed for too many years.
Anyone overweight tried ACAI (prononced ah-sa-ee)?
Supposed to reduce hunger, and raise energy levels.
In my case, devoutly to be wished.
Hey Jude, so glad you're out of the hospital.
Love you bunches.
Regina
Oh! Frank, I am so sorry you you got so badly hurt when you fell. Take care of
yourself and heal quickly.
My wish for you.
R
Hi Everybody,
I don't write much but I read everything. Unfortunately, I don't have answers
to your many questions as some of you do, or I would put it my two cents, trust
me.
I have a problem and need a sounding board. It goes like this:
I felt I was getting worse, and having decided
Am going over the MRI report of the brain before seeing the neurologist. One
notation in particular concerns me and I quote The FLAIR study demonstrates
multiple bright T-2 lesions in the deep white tracts of both cerebral
hemispheres, etc...
Frank explained at one time that 1 lesion is TM,
My neuro now tells me that my symptoms are caused by much more than TM. Namely
vasculatis. She put me on Lyrica and I woke up this AM with a pretty nasty
headache. Should I put up with this and it will pass? What were your problems
or successes with Lyrica?
R
Years ago, the doctor prescribed LACTULOSE to my mother after she had a stroke
leaving her with major problems including a horrible case of constipation. He
said that it doesn't irritate your bowels.
Wondering if any of you even heard of it.
Kevin, I would like to hear more about the herb
Check out today's San Francisco Chronicle (Jan. 13)
Stanford researchers have isolated powerful stem cells from human testes and
say the cells could ultimately yield a wide variety of human tissues including
cells of the nervous system, the liver, heart, skin and blood vessels...
etc.
Sorry everybody, the article was on yesterday's S.F. Chronicle (Jan. 13)
Oh Grace, I am so sorry to hear you aren't doing well.
On this Thanksgiving day, I wish with all my heart that your doctors can do
something, anything to help you feel better.
Know that my thoughts are with you.
R
So what conclusion does that new information leave us with?
Do we continue taking it, or not?
Why is it helping us if it's not supposed to help us?
Frank, you take it, don't you? Will you stop taking it? What would you
replace it with?
I'm confused. Think I'll go smoke a joint
R
... that Frank thinks caused his TM.
I never heard of it and looked it up.
Oh my! Reads as follows: Coxasackie knows as enteroviruses transmitted orally
(by ingestion of contaminated food) through what is known as the faeco-oral
route.
One more reason to be suspicious of eating in
I cannot have toe surgery because the surgeon was concerned about the
vasculitis. Don't we all TMers have vasculitis with all that numbness going on
in our legs and feet?
My rhumatologist and neuro nixed foot surgery.
I find it very difficult and painful to walk with these crooked things
What is the email address to access our support group.
I just met Tony who is interested but I can't remember
Thanks!
R
I don't trust it.
I stopped taking flu vaccines four years ago. That's when I was diagnosed with
TM
Haven't had a cold nor the flu since
My co-workers who have taken the vaccine haven't been so lucky
Before beeing hit with TM, I was taking the vaccine yearly regularly
I wouldn't be
Every year, for may years, he raises amazing amounts for research. What has
that money accomplished? If these many millions can't eradicate the disease,
what does it take?
And what about us with TM, why can't another celebrity learn from Jerry and
help US? Am I jealous? Maybe,
Frank,
What did you mean in your comment on Marinol when you say Marinol did decrease
my central pain.
Please explain. I will feel oh so stupid if I'm the only one who
wondered. Ouch lf I am.
Incidentally, all this talk of Marinol, Sativex, Pot, etc. reminds me a an
incident in the hospital
Saw my neurologist today. I told her about the problem with my right eye
(can't focus), about the intense fatigue, the constant pins/needles sensation
that have traveled to my lips and the tip of my tongue.
I have a prescription for a head MRI and some blood tests that may show or not
what's
I just read with interest the following Key Points:
. All TM patients should be investigated for signs, symptoms and serologic
evidence of systemic autoimmune disease (don't we already have an autoimmune
disease?)
. Sjogren's syndrome, sarcoidosis and lupus should always be considered in a
Grace,
I just watched the presentation (so well done) that Jim made so easy to
access. Thank you so much Jim.
Grace, thank you and your family also. I still don't understand if Devic's is
a disease of its own, or is it a complication of TM, or both.
Best wishes to you, a remarkable and brave
The throbbing, itching, sort of numbness that has plagued me on the scalp,
ears, left cheek... has now moved to my lips and tip of my tongue. This
morning, coffee tasted weird. I've never heard anything like that mentioned
anywhere from the group. My left leg is also getting weaker; I don't
A mouth spray for neuropathic pain and spasticity.
Reduces the use of opioid meds, improves quality of sleep and relevant aspects
of quality of life, etc.
Used in Canada with no problem from what I understand. And TO BE
RELEASED FOR CLINICAL TRIALS IN THE U.S. IN EARLY 2008.
Sounds
I saw the neurologist yesterday. She suggested we increase the Neurontin to
900mg 3 times a day for a week, then increase to 1200mg three times a week. I
asked about Lyrica in spite of my concerns since some of you didn't do well
with it. She said Lyrica was similar to Neurontin, may work
I noticed weird bruising in my feet and ankles recently. I thought at first
that my shoes were responsible and started wearing a size 7 instead of a 6 1/2
and a wide instead of a medium. My feet seem to be getting bigger. The
bruising remained.
Then I saw a very good foot specialist who
I'm traveling with you vicariously. You make it sound awesome. Wish I had
your guts.
Have a great time and let us know more about your adventures in Brazil and
Chile.
R
Hi Rob in N.J.,
It's a very personal decision. Your commute is quite a deterrent and certainly
a source of frustration. Would you feel the same way if you worked close to
home?
I am retired and now only work on Tuesdays and Saturdays, close by thank
Goodness. Not that long ago, I could work
What's kept me from traveling since TM is having to go to the bathrom.
How do you manage it?
I don't think I would drink all day which is a bad idea, but then.
R
It's a shame Jude had to put up with poor help in the nursing home, but I was
not surprised to hear it. When my mother was moved in one after her stroke, it
didn't take me long to realize that they are money making businesses who pay
their help next to nothing, many of them illegals with
Dear Sal,
You're certainly entitled to vent. I know I've done it big time and this group
has been wonderful and supportive. I was diagnosed with TM four years ago and
my symptoms are nothing compared to yours, but still, at times, I do feel sorry
for myself. I don't think there is anything
I increase Neutontin intake about three weeks ago. I'm always tired but I
think fatigue has increased somewhat. Any of you found that Neurontin incrases
fatigue?
Can't stand the soreness in my throat. I hate handling cigarettes.
Any of you ever tried the laced cookies or brownies. What's the difference?
Thanks!
R
Re: San Francisco Chronicle of March 6 in the Business section
Researchers unlock secret of producing specialized cells
In a scientific first, a reserch team at the Gladstone Institute of
Cardiovascular Disease and UCSF demonstrated that small regulatory molecules
called micro RNAs can
Is there anyone in the San Francisco going to attend? I would love to go but
can't get anyone to go with me. If the answer is yes, please let me know.
Regina
Trudy,
Progivil didn't do anything for me.
Oh! Rick,
You are so kind. I can't tell you how touched I am reading the emails posted
by this wonderful group. And I can't tell you how much your concern and
encouragement means to me. I'm around, all right, not going much anywhere
anymore. I have my good days and my bad days like the
Best idea is seeing a new neurologist. Zanax (for anxiety and nervousness) and
81mg aspirin? That's it! I'm no doctor, but sounds like you're not taking
anything for pain.
Good luck and let us know what the new neuro. has to say.
R
Kevin,
Why can't you get a doctor to give you anything for pain?
R
The more I read our emails, the more amazed I am at the challenges some of us
put up with and still manage to retain our sanity. To be hit with this at 33,
well, it's too young... But children get it too... That you feel strong
enough to consider going on with your studies is a good sign,
Candy,
Why does your doctor recommend Provigil?
I once complained to the neuro about being so tired all the time. She
thought Provigil would help. It didn't. I think that the fatigue is part of
our neurological disease, I can't imagine why Provigil would help. It didn't
help me and I
I'm so disapointed that the AVM surgery made no difference in my condition.
Five difficult weeks in the hospital... and what for? For nothing. I'm
sorry I said yes when the surgeon asked if I were willing to let him get into
my spinal cord and... I think it meant untwisting tangled up
Never mind his looks...
Good looks wouldn't hurt, but It's that amazing sense of humor I'm attracted
to.
My hunch is that he is short, balding, slightly overweight, piercing blue
eyes. Sorry to burst your bubble, ladies.
Grace,
What is LETM's and what is MNO?
Hi Grace,
Yes, your answer helped very much. In fact, I just read all about it in the
Mayo Clinic website. You have 3 segments (lesions) affected in your cord you
say, and yet you have neither TM or MS. It's all very complicated but in my
simple understanding, all of these
Natalie,
I'll be holding good thoughts for you tomorrow.
Good luck!
R
Obama said when he challenged Clinton regarding her failed efforts in reforming
health care in 1993:
The insurance and drug companies spent $1 billion in lobbying over the past
10 years. They're not spending that because they're contributing to the public
interest.
Greed always seems to
I was diagnosed with Sjogrens in the mid-80s and that's when I started seeing a
rheumatologist regularly. After that, I understood why I had dry eyes and have
been using eye drops ever since. I subsribed to the Sjogren's newsletter and
joined a group. Many in the group were in bad shape,
Tomorrow is my daughter's birthday and we're having Black Forest Cake with all
that oozing whipped cream and yummy cherries. For one day, I will ignore my
bulging thighs, the curse of TM the Dark One blessed us with, and I intend to
gorge myself with my favorite of all desserts.
I sincerely
Frank,
You say you take the small aspirin dosage. I take 81 mg. Is that the
smallest? I, until my March surgery, took Aggrenox.
Thanks.
R
I had a follow up visit with the neurosurgeon who did the AVM surgery on my
spinal cord in March. This very delicate procedure was a big success, and he
was obviously very proud of the result, except that.. I don't feel any
better... I can't tell that the surgery has made any
I really enjoyed the fun, quirky, witty, etc. comments regarding... I can't
remember what. Oh yes, it all started with Phran3que's name. Strangely
enough, seems like I (we) learned more about who we are, capsules of
background, from just that one email. My goodness, we are an interesting
Some of the physical therapists I work out with wear Keen shoes. They swear by
them. I noticed that the front is wide and round which would give toes lots of
room to breathe. I don't drive and have to wait for my daughter to take me to
the store that carries them. In the meantime, I
I read many of your burning, weird feet sensations. I get that too, but
what about the scalp?
With me, it started slowly after I was diagnosed with Sjogren Syndrome 15
years ago, but it was nothing compared to what I experience now:
I don't get colds, I get flu like symptoms, like sneezing
When your doctor writes an order for blood work, ask that she notes your name
on the order for a copy of the result be sent to you. The lab will send you
the results directly.
R
I wonder why some of our emails are sent (or just received) at leat twice.
Comments
R
Did any of you notice this article in the New York Times (by Nicholas Wade
published June 6, 2007?
It's about an easy-to-use technique for reprogramming a skin cell of a mouse
back to the embryonic state. It raises no serious moral problem, because it
creates embryonic-like stem cells
This is the warning I received:
Someone tried to send you a potential virus or unauthorised code. The
messageLabs Email Security System discovered a possible virus.
The message title was Re: (TMIC) Hi, I sent you an e-card from AOL Greetings,
etc.
The message sender was: [EMAIL
On a Memorial Day barbecue at my daughter's, a neighbor asked me the usual,
what is my problem walking? My favorite question, right? Well, to be
polite, I gave him a simple explanation and he really seemed interested and
with some knowledge of autoimmune disorders. Told me of someone he knew
After reading your intersting comments on this drug, I looked it up and can
only find DEXTROMETHORPHAN.
Comments, please
I am so scared!
I AM VENTING. THERE IS NO ONE ELSE I CAN SHARE THE FOLLOWING WITH:
Just a few weeks ago, it became obvious that I am getting gradually worse
every day. I felt vulnerable using the cane and started using the walker.
Following are the latest symptoms:
The
I'm interested in knowing what kind you take.
Thank you.
Regina
.
Regina
I have tried and tried and even had someone yesterday help me again. For some
reason, I have been accessing your group for over a year and am not allowed to
participate.
Please advise at what I am doing wrong.
Thanks!
Regina
Re: Stem Cell Research (HR3 discussed in Congress today)
I wanted to email all the congressmen (women) who refuse to vote for HR3.
Having suffered the consequenses of TMIC for the last 3 years, and having been
dismissed by a neurologist considered one of the best in the county if not the
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