My blog

There are two options if you cannot handle the amount of email coming
through the list:
1. Switch to the "digest" version.

I have been taking synthroid for many years due to the fact that I had a thyroidectomy. No problems with it. But I do not take sinemet either.

Where did you hear about it being taken off the market?

I will ask my pharmacist nephew.

Have a rest filled night and a great tomorrow.

Barb in Texas

[INLINE]

--
"The Lord's blessing is our greatest wealth; all our work adds nothing to it." Proverbs 10:22

Lori it does sound very similar except I had my gall bladder out. I
had 2 ERCPs and sphinterotomys it was after those 2 that I was
throwing up bile continuously and in severe pain on a fentanyl pain
pump.
My amylase was all normal etc. But pain got worse and worse and TPN
was started first then jtube. The jtube needs to be fluched a few
times a day and does get infections round it I got a few.
hmm get them to do a fecal elastase test. That was the only test that
shpwed a positive for pancreatitis. BUt I have hadd all my nerves
severed in other operations the one s that they commonly do for
pancreatic cancer patients a permananet celiac block. This sdidnt
work for me and I take daily MST and morphine and a host of other
things. I am a mystery here in NZ. No one has any idea what
happened . I just know eating anything causes me pain and without
morphine I would be lying on the ground writhing unable to eat and
stop thowing up.
Actualy I am too scared to try and lower my dose as I always feel
pain anyway and the mere thought of letting it coem back full forse
scares me shitless
Debs from NZ

anyone else take synthroid and sinemet.....any troubles as in news today
re FDA considering removing synthroid from market? nancy spires

Thanks Christine, I will let you know how it goes next Friday. You are

in my prayers also.

Hugs,

Debi

Hey Bonnie,
It feels like I got kicked in the gut and the pain shoots all around the
same area
Sometimes hard and painful enough it knocks me to my knees,
Carmen

Dear Colind,

Your message helps a lot in more ways than one! The doctors are also perplexed in Mike's case and your symptoms seem similar. Today Mike had an ERCP (forgive me if I have the term wrong) where they use a scope to look at his pancreas. The ERCP seems normal and they seemed to have ruled out everything including gall bladder and growths. His tris are ok. Yet he continues to have intense pain and vomiting whenever he eats. He says the pain feels like he's laying down on a baseball. I am so relieved that his doc sees that Mike is a straight-shooter because they are baffled. His enzymes are not above normal. I feel sometimes like I'm mentally working with an algebra problem - well if you rule out a, b, and c what is the unknown x? But I see that there is some mystery and that doctors can't always offer an instant answer. Tomorrow they are attempting to put a feeding tube down through his nasal cavity into his duodendum (I don't even know what the hell a duodendum is,
excuse me). If he is unable to tolerate the tube, I think they will try J tube next and last resort tPN that as people have noted runs a risk of infection.

I really like our current doctor - the previous doc is on vacation for a week - Mike is thinking about asking this current physician to be his case doc. He asks good questions, seems concerned, and listens. I do feel a relief in getting to talk to an MD today - finally had a day off to do so.

I want to send my love to Linda L., Debbie in Arkansas and everyone on the loop. You guys are great and I am sharing e-mails with Mike. He knows he's not alone.

Tomorrow I am getting a perm and haircut for my birthday. My birthday is Feb 19. I know this is whiny, but it's such a bummer with our first Valentine's day and my birthday coming and Mike being sick. His birthday is March 12 and maybe by then we can really celebrate. I know it's not like illnesses go on vacation for our convenience. Anyway, I am trying to take care of me too. Friends brought dinner again tonight. You know I really have nothing to complain about.

God bless you all and thank you for sharing with me. It means so much.

Lori Karns

Hi people,
Please!!!! can someone find out why the posts are being sent to a"download"
mode.
This is not helping me! I can't read them without a major computor workout (I
am not a computor expert, to say the least).
Maybe it would help if someone replying to a posting didn't include the
entire text of who they were replying to - it's not necessary. Everyone who
reads the posting knows what they said and doesn't have to be reminded.
Sorry to vent but this is getting old, I hope everyone is having as good a
day as can be expected (or better).
Aloha Rich

Doug,
A P.S. My clue was that this could destroy your hard drive. An email virus can not destroy your hard disk - An attachment file can be a program file and do nasty things to your hard drive - so not opening attachments can save you. While .jpg and .gif files can not hurt you - there have been a few viruses that have been disguised as this type of file.
Your BEST BET is to get one of the leading virus checkers (Norton and McAfee are top-rated). You can usually get them for around $20 per year. I use Norton and it has caught about a dozen viruses off this list alone in the last two years, one was only 24 hours old. The new Norton that I use (and I think McAfee does too) checks every time I log onto the network for updates and installs them all by itself. Once in a while - it tells me that I have to reboot, but mostly it just does it's thing. I only notice the hard drive accessing and see a little computer with icon (Live-update).
$20 per year is a small price to pay for protection on a computer that cost you $800 or more. If you have ever had to repair your programs after a virus hit, you will know that the many hours of work is well worth the peace of mind. The virus checker helps in more ways - if you get a disk from a friend or even your kids bring one home from school - it could easily (especially from school) have a virus - the checker will spot it and deny it access.
Take care, Bill and Charlotte
A virus hoax usually differs from a genuine virus warning in most
of these ways.
1)Information will be vague. A real email virus warning will tell
you what to expect to see in the subject line, the name of the
attachement, and so on. A real virus warning will specify the
types of computers and operating systems and email software
that are vulnerable. E.g. Windows 98, Windows 2000, Outlook
Express etc. Virus Hoaxes are often overbroad claiming the same
virus can infect all Microsoft Windows, all Machintosh, all Linux
etc etc.
2) A hoax will not include any references to webpages, nor to any
recognized security authorities or anti virus vendors. This makes
sense, if the hoaxter puts up a faux webpage it'll get zapped pretty
quick and if he makes a false reference to McAfee or others he will
be pissing off some people who have the net-savvy to hunt him down!
and prosecute for trademark infringement, defamation etc.
3) Exagerated reports of damage like "this virus deletes all your
files from your hard drive, crashes your computer, explodes your
monitor and sterilizes everone in a 3-mile radius." Real virus
warnings will tell you something like "attaches itself to the
foobar.dll file and may corrupt data files saved from Excell.
Also, in general hoaxes of all sorts are characterized by:
1) LOTS OF CAPITAL LETTERS AND EXCLAIMATION POINTS!!!!!!!!!
2) Adhomitions to take immediate action.
3) Ask you to send a copy of the warning to every email address
in the Universe. No legitimate virus warning is going to be sent
as a chain letter.
4) Usually say 'This is not a hoax' or 'THIS IS NOT A HOAX!!!!!'
(this one didn't, it was a bit more clever than most)

Hi Diane,
I'm so sorry, I didn't know you were in the hospital! I feel so
bad! I'm glad you are doing better. Yeah, the drugs can do a number
on your memory, huh? I'm glad you got away with not having to have
the TPN. Now that you are home, please take it easy, so you won't
have to go right back, k? Please, keep me posted how you are doing.
Lots of Hugs, Linda

A virus hoax usually differs from a genuine virus warning in most
of these ways.
1)Information will be vague. A real email virus warning will tell
you what to expect to see in the subject line, the name of the
attachement, and so on. A real virus warning will specify the
types of computers and operating systems and email software
that are vulnerable. E.g. Windows 98, Windows 2000, Outlook
Express etc. Virus Hoaxes are often overbroad claiming the same
virus can infect all Microsoft Windows, all Machintosh, all Linux
etc etc.
2) A hoax will not include any references to webpages, nor to any
recognized security authorities or anti virus vendors. This makes
sense, if the hoaxter puts up a faux webpage it'll get zapped pretty
quick and if he makes a false reference to McAfee or others he will
be pissing off some people who have the net-savvy to hunt him down
and prosecute for trademark infringement, defamation etc.
3) Exagerated reports of damage like "this virus deletes all your
files from your hard drive, crashes your computer, explodes your
monitor and sterilizes everone in a 3-mile radius." Real virus
warnings will tell you something like "attaches itself to the
foobar.dll file and may corrupt data files saved from Excell.
Also, in general hoaxes of all sorts are characterized by:
1) LOTS OF CAPITAL LETTERS AND EXCLAIMATION POINTS!!!!!!!!!
2) Adhomitions to take immediate action.
3) Ask you to send a copy of the warning to every email address
in the Universe. No legitimate virus warning is going to be sent
as a chain letter.
4) Usually say 'This is not a hoax' or 'THIS IS NOT A HOAX!!!!!'
(this one didn't, it was a bit more clever than most)

Hi Henry,
Are you doing any better yet? What are the doctors saying about
you? I was so happy to see you post! You have been in my thoughts
daily, worrying how you are doing! I have a question, if you don't
mind? Do these J-tubes of G-tubes have a high risk for infections
like the lines for TPN do? It seems like everyone who has had a
central line has had a line infection sometime or another. But, I
have never heard anyone say their J or G tube had gotten infected. I
was just wondering about it. Thanks for any info. It just a
personal question, I have never had a J/G tube, and was courious.
Lots of Hugs, Linda

for those who can .....
if this works ... whata message .. THE BIG WAVE .... lol
cheers
sheila

Hi all,
After a 2 week hospital stay, I have returned. What fun. Will fill
y'all in at a later date. Thanks for the phone calls Karyn and
someone else I think too. Can't quite remember...you know how drugs
are! Had some med changes and lots of bedrest. Almost got to the
point of needing TPN...but I slipped by unnoticed. Hope to chat with
y'all soon.
Diane
Beav62 on AOL Instant Messenger

John,
I have gone in and set the defaults to send the messages in both text and html, so you should be able to read them. If not ask again.
Bill
Bill
I haven't been able to read your messages for 2 or 3 days now. Even
since your message saying it should be ok (see below), it isn't. If I

Debi,
I have never had any trouble with lactose intolerance. But, again,
everyone is different, and leave it to me to be against the odds!
Thats just how I am, I guess. lol
Lots of Hugs, Linda

Subject: The Sign
A lady about eight months pregnant got on a bus. She
noticed
the man opposite her was smiling at her. She
immediately
moved to another seat.
This time the smile turned into a grin, so she moved
again.
The man seemed more amused. When on the fourth move,
the man
burst out laughing, She complained to the driver and
he had
the man arrested.
The case came up in court. The judge asked the man
what he
had to say for himself.
The man replied, "Well your Honor, it was like this;
when
the lady got on the bus, I couldn't help but notice
her
condition. She sat under a sign that said, "The
Double Mint
Twins are coming" and I grinned.
Then she moved and sat under a sign that said,
"Slogan's
Liniment will reduce the swelling" and I had to
smile.
Then she placed herself under a sign that said,
"William's
Big Stick Did the Trick" and I could hardly contain
myself.
BUT your Honor, when she moved the fourth time and
sat under
a sign that said, "Goodyear Rubber could have
prevented this
Accident...I just lost it."
"CASE DISMISSED"

In Kentucky, you don't see too
many people hang gliding. Ol' Zeke decided to save
up and get a hang glider. He takes
it to the highest mountain, and after struggling
to the top, he gets ready to take
flight. He takes off running and reaches the edge.
Into the wind he goes!
Meanwhile, Maw & Paw Hicks were
sitting on the porch swing talking about the
good ol' days when maw spots the
biggest bird she ever seen!
"Look at the size of that bird,
Paw!" she exclaims.
Paw raises up, "Git my gun, Maw."
She runs into the house, brings
out his pump shotgun. He takes careful aim.
BANG... BANG... BANG... BANG! But
the monster size bird continues to sail
silently over the tree tops."
"I think ya missed him, Paw," she
says.
"Yeah," he replies, "but at least
he let go of ol' Zeke!"
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Coach Bobby Ross had put together the perfect Detroit Lions team.The only
thing he was missing was a good quarterback. He hadscouted all the
colleges, and even the high schools, but he couldn'tfind a ringer
quarterback who could ensure a Super Bowl win.
Then one night, while watching CNN, he saw a war-zone scene in Bosnia.In
one corner of the background, he spotted a young Bosnian soldierwith a
truly incredible arm. He threw a hand grenade straight intoa 15th-story
window 200 yards away -- kA-boom!
"I've got to get this guy!" Ross said to himself. "He has the perfectarm!"
So, he brings him to the States and teaches him the great game offootball,
and the Detroit Lions go on to win the Super Bowl for thefirst time in history.
The young Bosnian is lionized as the Great Hero of football, and whenRoss
asks him what he wants, all the young man wants to do is tocall his mother.
"Mom," he says into the phone, "I just won theSuper Bowl."
"I don't want to talk to you," the old woman says. "You deserted us.You are
not my son."
"I don't think you understand, Mother!" the young man pleads."I just won
the greatest sporting event in the world. I'm here among thousands of my
adoring fans."
"No, let me tell you," the mother retorts. "At this very moment, thereare
gunshots all around us. The neighborhood is a pile of rubble. Yourtwo
brothers were beaten within an inch of their lives last week, andthis week
your sister was kidnapped in broad daylight."
The old lady pauses, and then tearfully says"...I'll never forgive you for
making us move to Detroit.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Ole and Inge were driving to Minneapolis when Ole put his hand on her knee.
Ole, you can go a little further if you want, she softly whispered.
And thats how they ended up in Duluth.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
How to save your ass if you plan to visit Wisconsin this summer.
Issued by the Wisconsin Tourism Bureau to ALL visitors:
1) Don't order filet mignon or pasta primavera at Al's Lodge. It's a
diner. They serve breakfast 24 hours a day. Let them cook something
they know. If you upset the ladies in the kitchen they'll kick your
ass.
2) Don't laugh at the names of our little towns (Sheboygan, Menomonee,
Nekoosa, Prairie du Chien, etc.) or we will just have to kick your ass.
3) Don't order a bottle or a can of soda here. Here it's called "pop".
Accept it. Doing otherwise can lead to an ass kicking.
4) We know our heritage. Most of us are more literate than you. We
are also better educated and generally a lot nicer. Don't refer to us
as
a bunch of hicks or we'll kick your ass.
5) We have plenty of business sense. You have to make a living here.
Naturally, we do sometimes have small lapses in judgment from time to
time, but we are not dumb enough to let someone move to our state in
order to run for the Senate. If someone tried to do that, we would
kick
her ass.
6) Don't laugh at our giant fiberglass fish and cows. Anything that
inspires tourists to buy 50,000 postcards can't be bad. And don't
laugh
at our love and pride of cheese or we'll kick your ass.
7) We are fully aware of how cold it gets here in the winter, so shut
the hell up. Just spend your money and get the hell out of here or
we'll kick your ass.
8) Don't order the vegetarian special at the local diner. Everyone
will instantly know that you're a tourist. Eat your steak well done
like God intended and have some potatoes with that, for heaven's sake!
Also, don't ask what a hot dish is or we'll kick your ass.
9) Don't try to fake a Wisconsin accent. We don't have an accent.
That
will incite a riot and you will get your ass kicked.
10) Don't talk about how much better things are at home because we know
better. Many of us have visited big-city hell-holes like Detroit, New
York, and Chicago, and we have the scars to prove it. If you don't
like
it here, Interstate 90, 94, and 43 are ready when you are. Move your
ass on home before it gets kicked.
11) Don't complain that Wisconsin has too many mosquitoes and farm
land.
If you whine about OUR scenic beauty we'll kick your ass all the way
back to Chicago.
12) Don't ridicule our mannerisms. We only speak when spoken to. We
hold doors open for others. We offer our seats to old folks because
such things are expected of civilized people. Behave yourselves around
our sweet, little gray-haired grandmothers or they will kick some
manners into your ass just like they did ours.
13) So, you think we're quaint or losers because most of us live on the
farm or in the woods? That's because we have enough sense to not live
in filthy, smelly, crime-infested cesspools like New York or LA. Make
fun of our fresh air and we'll kick your ass.
14) Oshkosh B'gosh is NOT a joke. Your ass WILL be kicked.
15) Last, but not least, DO NOT DARE to come out here and tell us how
the prairies should "go back to the buffalo." This will get your ass
shot (right after it is kicked). Just mention this once and you will
go
home in a pine box. Minus your ass.
Now enjoy your visit and then go home.

Linda,
I noticed you said you were going to IU. Is that Indiana University? My
sister works in Bloomington Indiana as a med. transcriptionists. She works
with a GI doc in Bloom. he told her there was one of the greatest GI Docs in
the world at IU. I was just wondering if you were going to Indiana.
Sincerely, Alicia

Dear Marion,

I have written to Phil a couple of times off list as we have the National Neurological, Professor Mathias and Catherine Best of The Sarah Matheson Trust as a common experience. I know Phil was having trouble back in the summer, but I was saddened and shocked to hear of the latest developments. Needless to say you are both in my thoughts and prayers.

Jill Lucas (in the UK)

Debs,
I am lactose intolerant. I have been for years. I can have skim milk
approx. once a week. I have to take calcium supplements. I can have certain
cheeses, but not a lot of that.
I do not know if it has anything to do with pancreatitis, but I know I have
not been able to take lactose for years.
Sincerely, Alicia

Alicia -
I have noticed the same in the last 2 years of my pancreatitis "suffering"
My hairdresser says that it might be due to lack of enough nutrients like
protein and the like. (because we many times drink our meals) When I can
eat, I make sure to pack in the protein. If I'm drinking smoothies, I put
protein powder in them. If I'm on clear liquids - OH WELL!! :)
It is scary for me because I come from a family of proud redheads!
Good luck and God bless!
Staci

In a message dated 2/12/01 5:58:42 PM Eastern Standard Time,
shirlf3542@... writes:

Dear Dave, I have had my pancreas removed and the islet cells transplanted
into the portal vein in my liver.
Dear Shirley, while reading your posts I don't think I have responded. I
just wanted you to know that I hoped for you to have the best results from
your surgery and it looks like you have. God Bless You and your courage. I
am so happy that you came through well and continue to improve. I sincerely
hope you continue to grow well and I hope you know you are an inspiration
to all of us.
Best wishes
Poncho

Pam,
Gee - how did I miss the Tom Chelimsky web page? This site has some great info - FROM a real doctor (and an expert in this field). The question of the month page has some good info :o) and I submitted a question :o)
http://mediswww.cwru.edu/dept/neurology/autonomic.html

Take care, Bill and Charlotte
MSA Booklet by University of Minnesota Movement Disorders Clinic
http://www.clinical-services.med.umn.edu/movement-disorders/msa.htm
Multiple System Atrophy: Information from the Parkinson's Foundation
http://www.parkinson.org/atrophy.htm
University of Minnesota Movement Disorders Clinic
http://www.clinical-services.med.umn.edu/movement-disorders/index.htm
Multiple System Atrophy : Information from the Parkinson Institute
http://www.parkinsonsinstitu!
te.org/movement_disorders/multiple_system.html
Multiple System Atrophy : by Horacio Kaufmann. Note you need Adobe
Acrobat
Reader to view this file.
http://www.mssm.edu/neurology/autodis/disorders/msa/msapaper.pdf
Multisystem Atrophy :
http://neurologychannel.com/msa/
Autonomic Disorders and their Recognition : 1997 editorial by Dr.
Christopher J.
Mathias, Imperial College, London
http://www.nejm.org/content/1997/0336/0010/0721.asp
Differential Diagnosis of Parkinson Plus Disorders : 1995 article by
Drs. Mark
Stacy & Joseph Jankovic, Baylor College, Texas
http://www.parkinsons-information-exchange-network-online.com/archive/091.html
MSA Information for medical students and neurology residents : 1998
article by
Dr.Timothy Hain, Northwestern University, Chicago
http://www.neuro.nwu.edu/meded/MOVEMENT/msa.html
MSA Shy-Drager Mini Information Sheet : June 2000 information published
by
the National Institutes of Health, Bethesda, MD
http://www.ninds.nih.gov/health_and_medical/disorders/shydrger_doc.htm
Multiple System Atrophy Information : June 2000 information published by
Worldwide Education and Awareness for Movement Disorders ( WE MOVE), New
York
http://www.we!
move.org/msa.html
Multiple System Atrophy Information : June 2000 information published by
National Dysautonomia Reseach Foundation (NRDF), Eagan, MN
http://www.ndrf.org/MSA.htm
Multiple System Atrophy Information: A lay guide for patients and their
carers
May 1998 information published by the Sarah Matheson Trust for Multiple
System
Atrophy, London
http://glaxocentre.merseyside.org/msainfo.html
Multiple System Atrophy Update : May 1999 article by Laurie Swan and
Jerome
Dupont published in "Physical Therapy"
http://www.apta.org/pt_journal/PTJournal/May1999/May99/v79n5p488.html
See Charmayne's MSA/Shy-Drager Pages for more links :
http://freepages.health.rootsweb.com/~charmayn/index.html
See Jeff's ShyDrager Page for more links :
http://www.wenet.net/~ccjm/shy-drager/
See Tom Chelimsky's Autonomic Laboratory page:
http://mediswww.cwru.edu/dept/neurology/autonomic.html
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com

My husband has big problems seeing. The neurologist says shy-drager may be
involved, but we do know that he had a massive hemorrhage in his left eye
from wet macular degeneration, and that immediately cut the heads off
people, and the other eye is not good. Lasers are not an option, as the
retinologist said more damage would result. What I'd like to know is how
much does msa affect the eyes--is it a problem with the slow focusing of
the eyes due to muscle weakness, or what. We see the opthalmologist again
in a couple of weeks. We had been to the Wills Eye Hospital in
Philadelphia a couuple of weeks ago, and now see the general opthal. in our
area who was recommended, and while he knows something about shydrager, he
doesn't know an awful lot. We find that whenever we see a doctor, Sam is
the only patient that they have or have had with shydrager. We like our
neurologist, who did his residency at Vanderbilt under Robertson. Thanks
so much, everyone. I do get some tips for working with this disease from
the group. Mary Lou Reynolds

Betty,
The BP machine is never a waste of money, Charlotte and I both use it often, but my daugthers use it also and now even the grandkids :o) My son-in-law discovered he had hypertension and is now on medicine. The funny one is that the seven year old saw us using it so much that he takes his BP with it and told his doctor what his BP was :o)
What has your husband been diagnosed as having? MSA is difficult to diagnose at best, but many symptoms you mentionare those of some brain disorder. With MSA - sudden changes for the worse are often related to infection. MSA patients are more susceptable to infection for several reasons:
* They do not swallow as well as normal people which leads to food or liquid getting into the lungs which leads to aspiration pneumonia
* Since swallowing is more difficult - they tend to stop swallowing liquids (the hardest thing for MSA patients to swallow) and save their swallowing for soft foods which are easier to swallow - this leads to dehydration and UTI's (urinary tract infections
* If a UTI is not treated, it can get into the blood stream and turn into a blood infection
Is he on Medicare? Is he even on SSDI (Soc. Sec. Disability)? If he has a diagnoses of MSA and is having the BP drops he should not be driving (especially if he can not remember how to get somewhere) and should be elgible for SSDI - then two years later, he can get Medicare.
Take care, Bill and Charlotte
Hi again, and Thank You from the bottom of my feet for all your
information. Bill, I feel so silly, sorry to make you work so hard
to figure out what I meant. It was $89.00 for the BP machine. That's
why Ken threw a hissy fit. Now it that had been an $89.00 dress, or
shoes or sheets, or whatever, he wouldn't have said one word. In
fact he wouldn't even have asked the price. But because this has to
do with the disease " he doesn't even have", he just couldn't believe
I "would waste money like that"...
Hugs to everyone..will try to catch up with you folks later. It's
funny. It's difficult to get on the computer at the present time,
because the minute I leave the room he comes to look for me, and if
I'm on the computer, he "knows I'm talking to those people who are
filling my head with nonsense and he tells me to get off the #@&*
thing!...LOL
!
Hugs
Betty
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com

Tull,
no problem. I'm always willing to help whenever I can in whatever way I can.
Also, regarding Karyn, I had something similiar happen once, but on a lesser
scale.
My whole hand went numb, but I could still move it. It took about 2 weeks for
me to regain all of the
feeling, the thumbs took the longest. Let her know that as long as the nerves
haven't been completely
severed (major trauma to cause this, so I doubt that they have been) the nerve
WILL regrow, it just
takes time. They've found that even if the nerve only has a tiny portion
connected, it will regrow,
though in that severe a case it took two years to begin growing. If the doctor
says it should be
better in about a month, then he's probably right. Compression of the nerve it
just doctor speak for
massive pinched nerve. (Can you tell I spend a lot of time reading science
magazines? Eek).
If it takes longer and Karen really wants to see getting around not typing, she
could look into some
voice recognition software. DragonSystems has some really nice programs called
NaturallySpeaking. We
got one of them for one of my coworkers who had surgery on her hand and couldn't
type for six weeks.
It takes a bit to orient to the way you speak, but it can run your whole
computer system for you if
you want it to, or you can get a limited version that does only dictation. One
of the IT guys who
installed it says his cousin who's quadroplegic uses it to run his whole system
for him. The bells and
whistles version can be pricey though and I'd recommend buying it from someone
other than them as you
can get better prices elsewhere.
Kimber

Dear Christine,
I am glad to hear that someone has found something. Well, I'm not
glad that you have another problem but, you know what I mean, right? I am
hoping that with treatment you will feel better and be able to eat!! You take
care and keep me posted.
Elizabeth

Hi again, and Thank You from the bottom of my feet for all your
information. Bill, I feel so silly, sorry to make you work so hard
to figure out what I meant. It was $89.00 for the BP machine. That's
why Ken threw a hissy fit. Now it that had been an $89.00 dress, or
shoes or sheets, or whatever, he wouldn't have said one word. In
fact he wouldn't even have asked the price. But because this has to
do with the disease " he doesn't even have", he just couldn't believe
I "would waste money like that"...
Hugs to everyone..will try to catch up with you folks later. It's
funny. It's difficult to get on the computer at the present time,
because the minute I leave the room he comes to look for me, and if
I'm on the computer, he "knows I'm talking to those people who are
filling my head with nonsense and he tells me to get off the #@&*
thing!...LOL
Hugs
Betty

From: M Bruner <mjwb1@...

Debi,
have you tried cutting the Vicodin in 1/2? I found that I could function decently at work on 1/2 (of course, I don't drive, so I'm not sure how much help this will be) and still have some relief from the pain.
Kimber

Shana,
when Spirit's leg bone has fully healed, try giving her some Glucosamine Sulfate
(yes, they do have
it for dogs and cats). You should be able to buy it at any pet food store or,
if you have them,
Safeways. It should help her leg be less stiff and if there is any residual pain
from the break (ie.
mostly in the winter when the cold can make it ache).
I have a 7 year old kitty who was trapped in a car engine compartment when she
was only 6 weeks old.
The owner of the car drove around with her in there and knew she was there. My
mother rescued her,
but her back leg was smashed (not just broken but shattered into pieces), her
wiskers on one side
singed off and had lung damage (developed into asthma).I found a wonderful vet
who repaired her leg by
wiring it together and only charged me $150 for the office visit, surgery, etc.
(I was in college and
have very little money). I have been giving her the glucosamine for a couple of
years now and she
doesn't seem to be as stiff in the mornings and loves to run. She only has
asthma attacks now about
every year or so, so she's doing very well.
Kimber

Pancreatitis-unsubscribe@egroups.com

Actually, La-Z-Boy makes a true lift chair. It has to
be special ordered. It's a little more expensive than
the ones from the medical supply store, but better
looking and higher quality, according to my mom.
Thanks for the temp tip. As I said in an earlier
message, I hadn't even thought about the high temp.
issue.
Melanie in OK

Thanks, all of you who posted info so quickly about this hoax. We had a
call at work yesterday from one of the department heads who'd received this
"virus" and had deleted the file according to the instructions in the
email. <sigh
do. We referred him to some of the same pages you listed.
Here's another good page to
check:
http://antivirus.about.com/compute/antivirus/library/weekly/aa051601a.htm
It's best to check out the warnings against these pages before circulating
more misinformation. I certainly hope this isn't the start of hoaxes which
recommend deletion of Windows system files. <sigh
Barbara

http://www.ddc.musc.edu/

This is a good one too!

Debi

Hi, Guys, Nice to hear you've help with Charlotte and can scoot out for playtime. Bad that UTI and contracture trouble. Have you any sound/action toys ? Jan used sports slammers that talked when dropped on his sliding board and fuzzy animals that roared and squealed when squeezed. I put him to bed nights with something that feels familiar in both hands. Musical huggies and luv bears or bunnies comfort as well as brace. Jan's eyes have pinpoint pupils. For months I've been worried about him staring into lights. Today's worry involves power outs via destructive straight line winds from Texas. Play hard and win! LA Louise in Springhill where doctors won't make housecalls to us but the dentist will.

Hi again Christine,

Well, I guess I'm confused... You said your sphincterotomies didn't last long?

I thought that was when they opened up the CBD? I thought the stents they

are putting the accessory duct were the things that didn't last long.... Do they

have to go in and take them out, or do you pass them? Ouch...

I had an ok day today, but I haven't eaten too much. When I take the Viokase,

I feel the same as if I don't take them, so I haven't had any today. How are you

doing today? You always sound so chipper!!! I think that is great! You may

not feel chipper, but you sound like it. I try to keep a "happy" persona while

I am awake, just for the sake of others. I think it is best for everyone around me.

Well, keep your fingers and toes crossed for me, and I'll do the same for you.

When are having the other tests done? Will it take long to get the results? You

must have a good doctor for her to test the glands. I haven't heard of that

before. I hope the medicine you are taking for that will make you feel better!

Best wishes, and lots of hugs,

Debi

Paula,
I don't even know what to say. Truly. How horrible for you. Please
don't be embarrassed. What you have dealt with would have put a
lesser person in the mental ward for sure. Please know I am praying
for you. I don't know what else to say.
Christine

I'm re-posting an old post I put up regarding your question. Hope
this helps.
From: George Relles <grelles@h...
Date: Mon Oct 30, 2000 4:48 pm
Subject: Re: [MSA] Lift Chair
Yes, absolutely. Medicare has a standard amount that
they cover for the mechanism in the lift chair, about $350 if I recall
correctly. You need to get your doctor to agree in
advance to "prescribe" the lift chair. And Medicare will not cover
it
if youhave already used Medicare to qualify for a wheelchair.
Anyway, if you call the regular Medicare phone number, they will give
you a different phone number to call for apparatuses and
appliances (they may call it something else.) When you call the
proper number, you should tell them that you need the proper
forms to request reimbursement for a lift chair. As I recall there
are 2 such forms. You can also confirm with them the exact
amount they allow for the reimbursement of the mechanism.
Since reimbursement is all they cover, you then have to find the
right chair, buy it and pay for it yourself.
What I did was to look around locally and find the brand, model,
size,
and material that I wanted. Here are 2 hints: Make sure the size is
right, and not too large. Get the person this is for to try it out
if
at all possible. And since MSA often comes with urinary
incontinence, consider paying a bit extra to get Naugahyde. Urine
will soak into cloth and leather, even if the material is
treated with Scotchguard or some other repellent.
When you know what you want, comparison shop on the net. I am going
to provide you with some sites and you will find that regardless of
the number they quote you, if you tell them of the other prices you
were quoted, they will come down. The place I started with wanted
$900 for an inferior chair and when I told them of the better model I
wanted that I'd been quoted a price of$535 for, they immediately
offered to sell it for $525, delivered and set up, with no additional
sales tax or delivery charge!
Here are some sites to check out:
http://www.spinlife.com/home.cfm
http://www.majorsmedical.com/majorsmedical/default.asp
http://www.galaxymall.com/furniture/liftchairs/
http://www.ElectropedicBeds.com/Lift-Chairs.html
http://www.electroease.com/
http://www.accessusaonline.com/davismobility/index.html
I can recommend the first one for top notch service but I can't
guarantee they'll have the best price.
Anyway, after the chair arrives, you need to fill out the forms, as
far as you can, and have the remainder filled out by your
doctor. When you have them all filled out you need to submit the
forms and the receipt for the chair to the folks who sent you the
forms. I believe we were reimbursed (for the lift mechanism only)
within 90 days.
I must say it was well worth the trouble. The lift chair is
comfortable and helps my mom recline so she can rest in a place other
than her bed. And it helps her get up.
Hope this helps. Contact me if you need any clarification.

refuse
to do things that

Janet,
Sorry you have to be here but welcome.
Don't hesitate to ask any and all questions of the family you have. Let us
know a little more about why you are here.
God Bless,
Jim Stark

Dear Dave,
All I can say is thank you. Your words and prayers are touching. I
hope you are well.
Christine

Dangerous HOAX!!!!!
This file mentioned is a Windows Utility - if you delete it you will NOT be able to restore long file names.
For info and directions on how to restore it if you have deleted it look at:
http://www.symantec.com/avcenter/venc/data/sulfnbk.exe.warning.html

DO NOT PASS THIS ON!!!!!!!
Bill

This appears to be a Hoax and not a real virus. See the following:
http://www.symantec.com/avcenter/venc/data/sulfnbk.exe.warning.html
David
- - - - -

Jim,
I an still sending it as both text and html. I have reset it now.
Hopefully this entire message will go through.
Bill
Bill,
Your messages are no longer coming through in the digest. See below. Have
you switched to a Web based e-mail that doesn't use text?
Jim from Guam

Hi Debi,
Sorry I am just getting home from Ann Arbor and am catching up with
the posts. I had two sphincterotomies done, within six weeks of each
other. The first was no big deal(other than the ercp itself) and was
only in four days. It hurt while it was in, but not excruciatingly
so. When it came out, I was in pain with my first meal once again.
The second one was a bear. I came home in pain (which the nurse said
was definitely not pancreatitis)-mind you we drive three hours. The
next day I went to the local ER and they sent me right back to Ann
Arbor where i stayed for two weeks with pancreatitis. So there it
is, from one extreme to the next, eh? How are you these days?
Feeling well?
Be well,
Christine

In a message dated 2/11/01 8:04:14 PM Eastern Standard Time,
mayer@... writes:

Dear Anna,
I'm sorry your gall bladder operation did not help you as much as
you expected. I've been wondering about the stages of this disease and if
there are any operations or treatments, if done at a certain time, would
help. Like some have had the operation to remove the pancreas and save the
parts that make insulin in the liver. If this works, why isn't it done for
everybody

Dear Dave, I have had my pancreas removed and the islet cells transplanted
into the portal vein in my liver. The islets are transplanted to prevent
diabetes. The reason it is not done for everyone is because so many people
don't know anything about it and so many people are reluctant to have the
surgery. I can understand that but I came to a place in my life that I knew
I couldn't live with pancreatitis any longer. I knew that there were no
cures for the disease and I could see my life getting worse everyday. I
realized that my future was bleak. I had had everything done that could be
done and nothing helped. I only got worse. In fact the more doctors did to
my pancreas while trying to help me only made me so much worse. When I heard
about the surgery and thoroughly understood all about it I knew that this was
my chance at a normal life again. I had to take action and have the surgery
before I became a diabetic since when one is a diabetic the doctors cannot do
the transplant.
Another reason chronic pancreatitis patients do not have the surgery is
because their doctors do not know anything about the surgery. Many have
never heard of it before. If they do know about it they will discourage you
to not have it because it will take business away from them. I was going to
a famous pancreas doctor who I asked about the removal of my pancreas and he
was strictly against it. He wanted me to have another surgery that involved
him. He started his program on me by stretching my small duct every two
months with stints to make the duct very large then he wanted me to have a
peustow surgery. During the stint part of the procedure I found out about
the pancreatectomy and stopped the stint placements and made my decision to
have my pancreas removed. Good thing I made that decision since the stints
were not working for me. I couldn't eat with the stints and I was on tpn.
I have learned so much from this support group and one thing that has really
been obvious to me is that cutting on the pancreas doesn't help. Those who
have had peustows and whipples continue to have a lot of pain and are no
better. I am so glad that I held off on any other surgery other than the
pancreatectomy.
Mn and Dr. Sutherland have been doing the surgery since 1970 and he is very
good at it. I feel so blessed that I found out about the surgery and decided
to have it done. I had pancreas pain since 1985 and have been unable to eat
since 1994. I spent six and one-half years starving or on TPN. I was
operated on Dec. 8 and now I can eat a full and complete meal. It is so
wonderful to be able to eat again after starving for so long. I just can't
tell you how blessed I feel. I now don't have to worry if I am going to have
a pancreas attack, if I can go to a function or family get together. Every
time I was with my family on Holidays while they ate I went to another room
in the house and cried. It was hell living like that and now I don't have to
do that anymore. So, Dave I have had the surgery and for me it was the right
decision and I am so happy I made that decision. What ever anyone else
chooses to do about their pancreastitis I wish and pray for the best for
them. I pray every night for all my friends in this support group and that
God will give us a cure for this terrible disease. A cure that will be more
acceptable for all. Your friend, Shirley

Do you feel the PICC has helped any?
Hi Alicia,
Yes, I think it has helped some, just because it allowed the pancreas
to rest longer than just the time I was in the hospital. Has it
helped overall? I am not sure, but I got some interesting info
today. My adrenal glands don't work. Now the endocrinologist wants
to do some more testing to find out why they don't work, whether it
is the adrenals themselves or the pituitary gland not sending the
message to work. They say that nausea, vomiting, weight loss can be
caused by this.............it will be interesting, yes?
Be well,
Christine

Thanks Carol. I never even thought about that. That's
what I love about this list! I suppose we could turn
the temp down and it might not be so dangerous. Thanks
again.
Melanie

Dear Lori,
Hey! I'm Henry with the group. I've been sick and back in the hospital recently so I haven't posted much recently, but youasked about Jim and the bowel feeding tube and if anyone had had it. I've had this done twice, and I can tell you what I know. The tube I have is called a J-tube because it goes into the Jejunum part of the small bowel. It is a short tube that is to my left of the belly button a few inches above it. It doesn't hurt me and I had a pump with liquid food being pumped through it off of my I.V. pole. It's really simple and youu just have to keep it clean and flushed when not in use. I've had this one in since November and the one before I had for a year and a half. Please feel free to ask me any more questions that you may have about the J-tube. Thank's!
Your Pancreatitis Pal,
Henry

Bill,
Your messages are no longer coming through in the digest. See below. Have
you switched to a Web based e-mail that doesn't use text?
Jim from Guam

I was reading on another board that 90 percent of people with
pancreatitis also suffer from lactose intolerance. I thought this may
be interetsting and helpful for us all. I know that when I eat ice
cream ,ow fat it causes me problems almost immedicately. Does anyone
else notice this?
Debs

Melanie,
Unfortunately 73 deg F seems to be an ideal temperature for MSA patients. As everyone says above that can be a disaster. A hot tub at 73 will feel cold, sorry. Have they tried him on something like Baclofen or Neurontin(sp)?
On the lift chair, the medical supply house can probably get Medicare to pay for the lift mechanism, but not the whole chair. I doubt that Medicare will pay a cent toward the La-Z-Boy as it is a recliner and not a true lift chair.
Take care, Bill and Charlotte
Hi All,
My parents are looking into getting a lift chair for
my dad. My mom's not crazy about the looks of the ones
from the medical supply place. La-Z-Boy has some that
she and my dad like better. Does anyone know if
Medicare will pay for part of such a chair? If so,
does it have to come from a medical supply place?
BTW, my dad continues to improve. His neck is,
according to him, "way up" and he's getting around
much better, probably because he can see better while
walking and is more sure of himself. His big problem
now is a *very* sore back. He says it hurts all the
time. Suggestions? Has anyone tried using a spa/hot
tub for muscle pain?
Thx!
Melanie in OK

Lorie I hope Michael feels better I know what hes going through. I
couldnt eat ot stop throwing up bile for 3 months.
They are still perplexed as to what is wrong with me.
I had IV TPN for a while no problems approximately 3 weeks. They had
to put in a new line every day though. An Anesthetist did this as I
was hard to get lines in.
Then They did a lapratomy to open me up and see what was wrong. They
inserted the J tube in then. They put through stuff called jevity
funnily enough there are different flavours but you cant taste it.I
was in hospital 2 more weeks and when I could stand up for a minute
or two I decided I was leaving.
I took the trolley that the food comess through home and changed them
myself. The down side is that they are hooked up for 16 18 hours a
day in order to get 2000 calories. I had the tube in long after I
tried eating. I have a mark on the left side where it used to be just
under my ribs.
I still have terrible pain whenever I eat and take morphine for it
everyday.I tried tramadol but was taking 24 a day and it didnt help.
Ultram I think you call it.
hope this helps

Thank you Barb for your recommendations to Bill. I am sure he will be able
to use them.
For me, they were a window into what the future might bring for Terry and
myself. Your comments were extremely credible and sensitive. Clearly, you
have been there. And, you have survived with the help of the Lord.
Perry Sennewald 804-244-0018

Linda,

Wish I would have known you were coming to Indy. I could've cleared my schedule, and met you and Karyn in town somewhere. Let me know if you will be back this way again. It only takes me 3 hours to get to Indy.
I will be in Indy Feb 24 and 25 for the Baptist Womens Convention @ the Marriott Down town.
Doubt that I will be able to visit much, but let me know next time and I will come down.
Good luck with your appoinment.

Becky

Tull,

Thank you so much for taking such great care of Karyn. And thank you for keeping up with us! Tell Karyn i will be glad to help her with anything she needs, just give me a call!
I am keeping her in my prayers. I will try to call her later this week, after things slow down here.

God Bless,

Becky

Hi Linda,

I am having a local dr do the ERCP stent & sphinc. What (where) is IU?

Yes, I should have learned by now not to get my hopes up on dr appointments....

I wish I could just stay home for the next 2 weeks, but I have to work. Thus,

I can't take the vicodin at work... But, I just keep telling myself that it could

be a lot worse...

I hope everything goes well for you on Fri. What do you think Dr. Lehman will

say or do?

Hugs,

Debi

Melanie,
Be careful about your father using a hot tub or even a long hot
shower - the heat can cause the blood pressure to drop and he could
faint.
Carol & Rob

Hi all,
It was a busy weekend around here, so I didn't get a chance to check
the board for messages for several days. Y'all have been busy!
First, an update on Karyn. She's SLOWLY adjusting to not having the
use of her left arm/hand. It's pretty frustrating for her at times,
and a LITTLE "scary", since know one can tell her for sure when or if
she will "get it back". But we have good reason to be optimistic
about that, so she's just trying to maintain a good attitude.
Karyn did get her PC back, although we need to re-load some of the
software, including AOL. I've just not had a chance to get out and
get another disc to do that yet. She probably won't be able to type
for a while yet, but she's anxious to at least get some way to start
reading the posts herself again.
Yesterday (Sunday) was her birthday, and it was also the day that our
church had scheduled its annual Health Fair. Karyn and I set up and
manned a booth representing the Pancreatitis Support Network. It was
amazing how many folks who came by took some information for friends
and/or family who are afflicted with this condition. It's just not
as "rare" as the medical profession makes it seem sometimes!
Paula,
Karyn said to let you know that she recently was switched from
"regular" insulin to "humolog", and from syringes to the "NovoPen",
so she has some unusued/unopened vials of regular insulin, and a bunch
of unused/unopened syringes she would be glad to send you as well.
Just let us know how to get them to you. (E-mail me directly at
tull@... ). Hang in there and Keep Posting! As you've
already found out, LOTS of folks on this board can relate to what you
are feeling, and how exhausting/draining it can be just to do the
things you need to do to "stay alive" from day to day. But you have
a wonderful resource/support group in this message board, and we all
care, and want to help in any way we can. Don't give up!
Becky,
Karyn had an appointment last week with the State office of small
business/non-profit organizations, and got lots of information. The
rep was impressed with the Constitution/By-Laws you worked on. She
came home with another large stack of paperwork/forms she needs to
fill out in order to get non-profit status for the Pancreatitis
Support Network. With everything else that went on this week, she
hasn't really had a chance to sit down and start plowing through that
yet. But if/when she needs more help with that, this is the first
place she'll come. She does want to get going on that so she can
start working with the Pharmaceutical reps on this year's Symposium,
and maybe a couple of other projects she has in mind.
Lorrie (C.),
I think the problem with constipation is a common problem with any
patients who are on these kinds of pain meds for a long time. They
tend to put "smooth muscles" to sleep, which unfortunately often
includes the digestive tract/intestines, etc. One product that Karyn
has found that seems to help her is Miralax, a prescription laxative.
You may want to talk with Jim's doctors about that.
Lori (Karns),
I think you've already gotten some good info re: J-tube vs. tpn. Lots
of folks on this board have had experience with both. Karyn was on
tpn for a while, but she's not had a J-tube. The J-tube was going to
be her next option if she was not able to eat anything after they
removed the tpn. IV-access has a couple of drawbacks. First, they
are very prone to line infections, and since it is a direct route to
the heart, this can be very dangerous. Even Karyn, who is a nurse by
training, was unable to prevent that from happening. Second, like
most other systems, the digestive tract will atrophy over time from
disuse, and so even if her pancreas finally did "settle down" to the
point where she could start eating again, she might not be able to
digest anything. re: nausea - I'm afraid that seems to be about the
most common symptom of this disease. That's why patients have to take
the oral enzyme supplements (Viokase, Creon, etc), but it's difficult
to figure out exactly how much of that to take, and how soon before
eating, etc, to match what the pancreas is no longer able to do.
WIthout the right amount of these digestive enzymes, the body simply
cannot break down/metabolize foods, and they have no where to go but
back where they came from. Karyn routinely takes anti-nausea
medications prior to eating (along with her enzyme tablets) at this
point. Phenergan is a common one, but can cause severe drowsiness in
some patients. Karyn currently uses Zofran, which is effective, but
quite a bit more expensive.
Shana,
Sorry to hear about Spirit's accident, but glad to know she is "on the
mend". I tried accessing her "guest book", but the first one was
full, and the second one was "temporarily unavailable". I think
that's a testament to the fact that animals are all about
"unconditional love", and so elicit that kind of response. Great job
with the pics on your web site, btw!
Linda,
Let us know what time your appt with Lehman is on Friday, and maybe
Karyn can arrange her schedule to meet you at IU before or after if
you like. Or maybe you two could at least connect by phone while you
are in town.
Finally, thanks to everyone for "keeping the board going" in Karyn's
absence. Hopefully she'll be back with you soon. Sounds like most of

Melanie,
Spas & Hot Tubs are definitely out!!!! Our patients can't take the heat!
Best regards,
Don

--- In shydrager@y..., bparrott2001@y... wrote:
This part worries me a bit:
Yes, I think the general agreement is that any quick turn for
the worse, including confusion and memory loss is possibly a
sign of infection or other secondary cause acting in concert
with the patient's already weakened state. According to the
literature SDS patients usually develop obstructive sleep apnea,
and often central nervous system apea too. When that
happens I think most patients feel the effects quite quickly--
especially increased fatigue.
Just from a layman's perspective here (the term 'ignorant' layman
would not be an exageration in my case) it seems that if Ken is
still ambulatory, still walking about and engaging in most normal
activities, it would be unusual for the SDS itself to be the
immediate cause of cognitive difficulties.
I think that SDS tends to spare the cognitive functions until
late in the illness. Each patient is different, but it would
not hurt to go over with his doctors any differential diagnosis
independent of the sds for his memory loss and confusion.
Also, you can ask your pharmacist for UTI test strips that can
be dipped in his urine to check for infection. It won't hurt
to do that regularly along with the records you keep of his
temperature and BP.
Doug in Greenbelt, MD

Linda,
I am sorry you are not feeling well, I hate that my favorite place since
this disease is the bed... I work at our local hospital here in dietary, I
run the cafe when I am there I do love my job just can be busy busy at times,
but so far so good...
I have some diarreha today which always scares me... not eating well either
so maybe that is it.. hopefully..
I hope you are feeling better today..
Hugs and kisses
your pancreatis pal Anna from Michigan

Hi All,
My parents are looking into getting a lift chair for
my dad. My mom's not crazy about the looks of the ones
from the medical supply place. La-Z-Boy has some that
she and my dad like better. Does anyone know if
Medicare will pay for part of such a chair? If so,
does it have to come from a medical supply place?
BTW, my dad continues to improve. His neck is,
according to him, "way up" and he's getting around
much better, probably because he can see better while
walking and is more sure of himself. His big problem
now is a *very* sore back. He says it hurts all the
time. Suggestions? Has anyone tried using a spa/hot
tub for muscle pain?
Thx!
Melanie in OK

Dave,
Hi thanks for the post I to am sorry the gallbladder removal wasn't more of a
relief for me, I think if they knew more about the disease that different
things might work better, I to wondered about the surgery Shirley had done if
I had it early like now if it would be a better relief, but none of My
doctors think much of the surgery they tell me that it has be done now for 10
years or so and not great sucess, but then I think sometimes they don't want
you totally better cuz they lose business and since they don't do the surgery
they don't benifit.. make since??? I don't know I just sit and wonder...Hope
you are feeling better..
Hugs and kisses
your pancreatis pal Anna from Michigan

Ah Debi,
I'm so sorry they had to postpone you for a whole week! This stinks,
because I know you were really looking forward for this to be over.
Where are you having it done at? I go to IU this Friday for a clinic
visit with Dr. Lehman. Please, take care of you.
Lots of Hugs, Linda

Hi To all of you out There !!!

I'm Changing My Email Address - From now on : itzik_now@...
Update Your AddressBook/Memory... :-)

I will use my previous Email (the_itzik@...)
for a While (Like 2 Weeks) and then I will Stop...

Keep In Touch...

Me.

[INLINE]

In additional to what Barbara stated, don't forget that simply
drinking a glass of water before standing will aid in maintaining a
good standing blood pressure and ease the sensation of fainting.
Standing with the legs crossed at the ankles will also drive the
pressure up and prevent the dizziness with standing. One may also
tighten the calf muscles to get the same effect.
DON'T forget that extremes in temperature will allow people with MSA
to become dizzy and syncopal. Try and schedule activities to avoid
being out in extreme heat or cold.

Hi Debi,
Oh, your welcome. I'm just happy I can finally do you people some
good for once. How are you doing? I'm still coughing my head off,
but the vomiting has finally stopped. My temp isn't as high as it
was over the weekend. I think I'm on the uphill now! Please, take
care and I hope you have a wonderful week.
Lots of Hugs, Linda

Steve,
That's possible. We keep the house temperature about 70-73 deg F all year. But going outside in extremely hot (or cold) is rough on MSA patients.
Take care, Bill and Charlotte
Hi folks
Based on your experience does "normal" temperature change through the
seasons and/or over time. I take my temperature every morning upon
waking and over time (the winter months) established a "normal" of
96.6. The accuracy of the thermometer was checked against my docs. I
recently had or have a uti and/or other infection where my
temperature reached 99.5 or approximately 3.0 points above normal (a
non-MSA equivalent of 101.5).
After two weeks of treatment with Cipro and then with Bactrim the
morning temperature dropped to 97.3, and has stayed there. The other
signs of a uti (urine-color,aroma,frequency) have disappeared. The
only evidence of a uti is temp. I may get another urine test
although self-cathing always shows some bacteria. Also the infection
may not be confined to the bladder. Since the weather has changed are
we subjec!
t to increases in normal body temp?
Thanks
Steve
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In a message dated 2/12/01 7:12:13 AM Central Standard Time,
dvdsterritt@... writes:

I was just diagnosed a few weeks ago? Have you had any surgeries or anything
yet? I'm having a stent and sphincterotomy done on Friday. Everyone thinks
I'll be all cured! Hopefully it will help....
Well, I hope you have a good day, and keep Happy Thoughts,
Debi

good luck on the spinc. & stent. i have not had these procedures done, but
many on the site have had. is there someone that can email us to let us know
how you are doing? when do you have to go in? your friend, debbie (ark)

lori - mike is blessed by having you love and care for him. be sure and let
him know that we are all praying for both of you. be sure and let us know
what they decide to do for him as far as nutrition is concerned. your
friend, debbie (ark)

These are definitley tried and true techniques of when anyone feels like they are about to faint. Also, deep slow breaths or massaging the artery on the left side of neck. It is so important to learn how to fall, just incase. My friends and family are aware of the look I get before hand, which is usually more pale and clammy. Forward or sliding down is best. Also, let someone know before it gets out of hand.

I get faint when I eat as well as when I don't (ha!ha!) but my doctor suggest grazing throughout the day, and eating highly digestible foods like simple carbs and low saturated fat - fruit juices etc. I drink Spirulina protein shakes in Soy milk at least once a day and keep power bars around. that way I don't have to get all my nutrition in large portions. I also take florinef atleast a half hour before meals and drinks tons of coffee with sugar and soy milk.

I totally agree that the confusion is often a sign or infection or stress (even from a simple fall). I also increase my prednisone when I notice it is getting harder to control any of my symptoms. My doctor keeps on top of me daily as do I ; ) The absolute worse is having an infection, not being able to get enough fluids in, getting completely lethargic and sleeping for hours upon hours which makes it only worse. the answer is truly nipping it ahead of time. I usually get shaky chills with any sort of inefction, also without much raise in temperature and often a very low one. Tylenol is always at hand as is cipro or bactrum.

waverley
From Barbara Woodford.
So many people complain about fainting or passing out during periods of
Low Blood Pressure. My husband, Chuck, gets very, very low BP upon
standing or walking up a hill or getting out of the car, but he has never
passed out (many thanks).
I don't think anyone has mentioned the technique he uses when he gets
dizzy. He bends his knees a bit, leans down, with his head as low as
possible and holds his body by putting his hands on his knees. Another
technique is to cross one's legs while standing, but he prefers appearing
to be looking at the ground rather than needing to go to the bathroom.
Of course, now that his balance is getting a bit bad, he tends to fall
over on his head, but using a cane should help that.
I hope this is helpful for those whose BP nosedives.
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Hi folks
Based on your experience does "normal" temperature change through the
seasons and/or over time. I take my temperature every morning upon
waking and over time (the winter months) established a "normal" of
96.6. The accuracy of the thermometer was checked against my docs. I
recently had or have a uti and/or other infection where my
temperature reached 99.5 or approximately 3.0 points above normal (a
non-MSA equivalent of 101.5).
After two weeks of treatment with Cipro and then with Bactrim the
morning temperature dropped to 97.3, and has stayed there. The other
signs of a uti (urine-color,aroma,frequency) have disappeared. The
only evidence of a uti is temp. I may get another urine test
although self-cathing always shows some bacteria. Also the infection
may not be confined to the bladder. Since the weather has changed are
we subject to increases in normal body temp?
Thanks
Steve

From Barbara Woodford.
So many people complain about fainting or passing out during periods of
Low Blood Pressure. My husband, Chuck, gets very, very low BP upon
standing or walking up a hill or getting out of the car, but he has never
passed out (many thanks).
I don't think anyone has mentioned the technique he uses when he gets
dizzy. He bends his knees a bit, leans down, with his head as low as
possible and holds his body by putting his hands on his knees. Another
technique is to cross one's legs while standing, but he prefers appearing
to be looking at the ground rather than needing to go to the bathroom.
Of course, now that his balance is getting a bit bad, he tends to fall
over on his head, but using a cane should help that.
I hope this is helpful for those whose BP nosedives.

Good Morning Dave,

Yes, learing Mandarin puts me to sleep. I was studying at lunch, but I found I

was getting sleepy. So, I also, study at night.

I was just diagnosed a few weeks ago? Have you had any surgeries or anything

yet? I'm having a stent and sphincterotomy done on Friday. Everyone thinks

I'll be all cured! Hopefully it will help....

Well, I hope you have a good day, and keep Happy Thoughts,

Debi

Hi Lorrie,
Hey, you hang in there girl! Please, oh please take care of yourself
and watch that diabetis (sp?). I'm worried that you will run
yourself ragged. It sounds like Mike is in pretty good spirits? I
don't know much about the G or J tube you spoke of, but I have been
on TPN several times. The last time, Sept. - Nov., I gained over 20
lbs. They say that was a good thing, but I'm still thinking it was
not. I am already overweight, so I really didn't need the extras!
Since I have been sick the past month, I am losing some. Anyways,
TPN is just a big, heavy bag of milky looking stuff. Mine was ran
24/7 and it had alot of good nutrients & vitamins. I also had to add
insulin, zantac & vitamins. I had to check my blood sugar every 6
hours. I had a black backpack and a little tiny pump so I could go
anywhere & everywhere with it. It is given through IV, either a PICC
line, in the top of the arm, or a groshong, placed in the chest. The
last two times I was able to do this at home. The first time I was
hospitalized at Ohio State for 6 weeks, that was with my first attack
of pancreatitis. This is my experience with it. As we all know,
everyone of us are unique. Tell Mike good luck for me, and I'm
thinking & praying for him. We miss him! I hope he gets home to you
soon. Please, keep us updated? You are such a wonderful person,
Mike is so lucky to have you!
Lots of Hugs, Linda

Bless your heart. You really have a lot on your plate
right now. This disease is so frustrating. I don't
have a lot of answers for you because I'm not involved
in the day to day care of my father. However, I can
tell you that my father has lost so much weight in the
last year. He is terribly thin. The doctors say it's
not directly related to MSA, but they can't find any
other reason for it, either. He just doesn't have much
of an appetite. I think some others on this list said
their loved ones with the disease lost weight, too.
As for the memory loss, I can tell you that my
father's doctors have said that confusion and memory
loss are often signs of an infection. They say that
MSA typically affects the "non-thinking" parts of the
brain, so those are not often major, on-going
symptoms. I'm sure there are exceptions.
Try to take care of yourself. It's so important.
Melanie in OK

Betty,
Lot's of stuff here, so if I miss something ask again. Yes, most of what we learn has been from doctors, but we have the advantage of having the experience of hundreds of doctors all over the world. Experience is also a big help and there again, we have about 500 others on the list to learn from. Between the knowledge of all our doctors and the experience of all our caregivers and patients, we have a great tool for fighting the effects of the disorder.
One prime example is that people on this list can spot an infection from 10,000 miles away :o) Catching an infection a day or two early can be the difference between life and death for the patient. We have learned that if a MSA patient has memory problems, it is time to check for infection in spite of a low temperature - confusion and memory loss are NOT normal symptoms of MSA (but can be especially in late stage). We have also learned that a MSA patient can come back from an infection with physical and speech therapy, but they must be done every day to be most effective. Most of this knowledge came from doctors through our (and their) experiences.
Anne had bad experiences with anesthesia until a doctor told her that she needed to be hydrated before going under. Jim Todd's doctor put him on Baclofen (a MS medicine) and that was the first I had heard of it. Someone else mentioned their doctor put them on Amantadine. Charlotte's present neurologist has been pushing exercise for PD patients since before Charlotte was dx'ed as PD in 1990 and actually has a weekly exercise program set up which is paid for with a small token fee, but no one is turned away. The list of doctors that have helped us through our communication goes on and on, but one more to thank is Dr. Robertson of Vanderbilt who set this list up originally and allows us to share this knowledge.
There is a wealth of info on the internet - some good BUT some bad. You must use common sense to interpret the info. This list has had a lot of common sense available, both patients like Jim Todd and Anne (they were around before I came on the list - there are many more. And caregivers who are so numerous I won't try to list them. Then we have Pam who is our resident fact finder, she is the fasrest web searcher I have ever known :o) and I though I was fast at searching the web :o)
BUT A WORD OF CAUTION! Don't EVER be afraid to ask a question like the BP or thermometer things. We don't remember to memtion them as we have been using them so long that many of us are on the 2nd or 3rd one. You can NEVER ask a dumb question :o) you may get a dumb answer :o)
Before I forget, the readings of BP sound like acceptable MSA readings. This paragraph has me a little confused - what is "89.00" in the paragraph "
I forgot to tell you that while at K-mart I bought an automatic blood
pressure device. I honestly didn't know there was such a thing. I
kept wondering who taught you folks to take a blood pressure, but was
too embarrassed to ask you, even though you keep mentioning the blood
pressure of your loved one was this or that. It was 89.00 and Ken
hit the ceiling, telling me there was nothing wrong with him, just
not feeling very well the last couple of days.
If that is temperature it is low for even a MSA patient, if it is heart rate it is slightly high for most MSA patients and if it is BP - I think you mistyped it :o)
How often to record the info - that is a good question - sorry I don't have a real good answer. I do it at least once a day first thing in t!
he morning to have a baseline resting immediately after giving her the first set of pills and before they have a chance to work - this may raise her BP as she gets about 10 ounces of water with that set of pills (and a florinef). Generally I take the resting BP and temp. within 5 minutes of giving her the pills. The sitting BP is about 15 minutes after the pills as that is when the Sinemet begins to work and I change her brief. I no longer do a standing BP as she can not stand unassisted. I attempt to keep her sitting BP in the range of 100-120 over 60-80. If she feels warm or cold, I sometimes take temp and BP as much as every three hours.
MSA does breed a symptom of uncooperative patients :o) John, Fordy and Anne are you listening :o) In Charlotte's case, she is German to boot (like me :o) so we have our problems there too.
Asking questions is an intelligent thing to do. Both on the list and with your doctor. Do NOT be afraid to ask. Especially if !
I did not answer all your question :o)
Take care, Bill and Charlotte

Dear family,

Just a report on Mike. Thank you for all your kind words and explanations so far. Mike is still unable to eat without "losing his lunch". Today was one month without any solid meals. Tomorrow they are looking at one of two options. They may attach a tube to his lower bowel in order to feed him and still avoid the pancreas. This would require a surgical procedure of some sort. The second would be to start tPN. I will be so relieved when he gets some nutrition in him. So far all he's had has been glucose water via IV. If anyone has any experience with the procedure I described with the lower bowel, I would be interested in knowing. Also, if anyone has gone through a time where their triglycerides were lowered, blood sugar under control, but were still unable to keep food down. I am just trying to make sense of something that is very mysterious for me. They haven't found any abnormalities other than a slightly enlarged gall bladder which they say is not atypical
for someone going without food.

I visit the hospital every day. Ironically, Ben and Jerry's is making a mint off of me, whereas my sweetheart can't eat! (I don't get the demerol or morphine though) I need to lay off the stuff - I am diabetic myself. I have a good friend who brought a gift for Mike to the hospital and brought me some veggies (bok choy) 'cause she figures I might not be eating so good. What a sweetie. Mike is very calm in spite of it all - he's had chronic pancreatitis for 10 years.

His mom called me tonight. I feel so bad because I can't provide the answers I would like to. I never know when the doctors will show up - I'm scared they will do some procedure and I won't even know about it. I work weird hours and don't meet up with them usually.

I read some of your shares and I wish I had "Midas touch" to heal pancreas's. I had no idea before I met Mike about how painful this condition is and how misunderstood. You are some of the bravest people I know. I pray God's blessing and peace to each one of you on the loop tonight.

Lori Karns

Dear Marian,
Please let Phil know that we are thinking of him. He has been a great source of
strength and encouragement to others with MSA over the years. Please keep us
updated on how he's doing.
Warm regards,
Pam in Canada

Becky,
Your information and advice was right on the money! Paula, don't give up!!!!!
Life's tough but we have to hang in there. Please don't feel embaressed (I
cant spell) about putting down your feelings on this forum, we all have our
crosses to carry and we all have bad days. Be strong,I know this is sometimes
difficult, but life is to important to give up on. Hand in there and take
advantage of the addressess and numbers posted.
It is worth following up on. You go girl! Start living again - it's worth it!
Hope everyone is having a painfree day.
Aloha, Rich

Hi Alicia,
Thanks for the suggestion about the state insurance. I live in
Ohio. I have never heard of state insurance, so we much not have
it. I do get the phone cards all the time, they are pretty nice to
use. Honestly, I don't miss the long distance. The only time I use
it is when I have to call Dr. Lehman. How are you doing this
weekend? Thanks again for the info.
Lots of Hugs, Linda

Barb,
Thanks for the note :o) it will take me a while to organize all the thoughts into my outline :o) I had not included some of the thoughts you mentioned in the outline yet.
Speaking of caregiving, what are you doing about your knee? You can't coach Little League with a bad knee :o) How is the grandson with the bad wrist?
Shane had to miss his last game, as they are all down your way (well actually in Monroe, LA) for a wedding this weekend.
Take care, Bill and Charlotte

Hi Bill and Charlotte, and Carol...hope I didn't miss anyone. I have
certainly missed you folks. Our son has been back home for oh...about
a month, and Ken was doing great, and so life had settled enough that
I hoped I can enjoy your posts more often. Remember I used to soak
up every word like a sponge?..LOL I still will.
I read your posts at 9:30 last night, so I flew out the door to K-
mart to get a new thermometer, just make sure it read correctly. Ken
is so very certain that I've lost my mind and so has the doctor and
that he will be fine.This is not delerium talking. He has always
been a head in the sand type of guy. If he ignores it, it will go
away..ever known someone like that? LOL He is in such denial. I
really gave him a soft talking to hoping to both educate and
encourage him. I'm learning about this disease as well, but I
explained that He had shy drager, that he wasn't going to get over it
like the flu, that it involves brain cells that die, and they die in
a place that controls muscles, and that one has muscles all thru the
body, not just the arms and legs. I explained how the bladder and the
sphincter work, and that he could either go thru life with his head
in the sand, or pay attention and do what he could to help himself
and live a longer and hopefully more satisfying life. I likened it to
diabetes, which several in my family have/had and that there is no
choice about being involved with ones care. You care for yourself,
or you die.
I forgot to tell you that while at K-mart I bought an automatic blood
pressure device. I honestly didn't know there was such a thing. I
kept wondering who taught you folks to take a blood pressure, but was
too embarrassed to ask you, even though you keep mentioning the blood
pressure of your loved one was this or that. It was 89.00 and Ken
hit the ceiling, telling me there was nothing wrong with him, just
not feeling very well the last couple of days.
Long story short, I don't have a cooperative patient!I will call the
doctors office today to get a history of his temps, and BP's just for
my record. Last night his temp was 97.8...BP sitting 122/70 and
after a walk around the coffee table it was 86/53. His pulse was 82
sitting and 85 standing. I know you're not doctors, but you folks
have many miles of education on this topic than I do. Does this sound
right? It is close to the readings he's been having, but I just
can't remember exactly what they were. As I mentioned, it's been a
rough year...no self pity,..just explaining.
How often do you folks record your loved ones BP and Temp? You
mentioned it could be uti, that I understand the dynamics of, but I
think Carole mentioned pneumonia. If Ken isn't sick with a cold or
flu or the like, how could he get pneumonia? Is it from the mucus he
constantly clears from his throat? And, if I understand the
underlying theme of most posts, it's that MSA patients can get very
sick, very quickly, and the slightest upset in his system can reak
havoc. Correct? If so, why aren't his symptoms more dramatic. I'm
just so confused. Or is the dramatic part the fact that the last two
weeks, he's been weaker, and not really confused, so much as
forgetful. And his appetite is waning.
Like last night we went to pick up our son's truck from the shop(he
works until after 10 PM, needed a helping hand) and we've taken that
back way a gazillion times and Ken had to ask me which way to go at
every turn.
Are you telling me that even though the neurologist said the
confusion/memory loss was due to the progression of the disease, that
I should be more aware, and realize it's a medical change more than a
neurological change, since it's so sudden?
Got a notice in the mail that Ken's primary doctor is no longer a
participating member of his BC/BS, so it's off to another doctor, for
what, the 3-4 time? There just aren't any doctors within an hours
time that are on his plan, but he will have to see one of them as a
primary, in order to be admitted to the hospital, should it come to
that someday. No doctor, absolutely no doctor, seems to have much of
a clue about this disease. His neurologist keeps his thoughts close
to the cuff, if he has any, the internist thanked me for bringing him
more info from the net than his school books had, and I ran into his
urologist the other day, and mentioned the new diagnosis and he said
he remembered studying that in school, and that there is a particular
urinary problem shy drager patients have, but at the moment the name
of it wouldn't come to mind. He would look it up. He is a vandy
graduate! These doctors have all been in practice ten years or
longer. If I didn't have you folks, I don't know what I'd do. Have
you learned by trial and error, or from your doctors, or who?
Again, thank you so much. My heart is so heavy I think I can't
breath. Ken can't tolerate much more than walking to the bathroom or
bedroom or just around the house, and he insists on going with me to
help me clean the last remaining income producing cleaning accounts
we have. It was a big biz until January,doing both commercial and
residential with a full staff, and now we've reduced it to this.
There is no one working for us now, employee turnover was great, just
part of the biz, and I couldn't juggle that any longer with Ken's
health. I couldn't stay on top of things, and well, that's another
story. Ken had his own route with his own crew, just two years ago,
even less that that actually, and now....If he tries to vacuum, he
becomes so weak, he must sit down, his face is ashen gray, and his
nose if purple. He is losing weight like crazy. But he is so tickled
that he's lost his "milk" belly..LOL He doesn't drink so it's not
a "beer" belly. His legs, which I've always envied ..lol are now two
toothpicks, but yet he thinks he's fine. Oh, I called the
neurologist, there's absolutely nothing open until his regularly
scheduled apt. in July. All the doctors here are that way. The
doctor, a dermatologist, that I work for is now booking into August,
and I mean he is double booked every day!
Well, thanks again....guess I had more bottle up than I thought.. If
you've made it to the end of this post, thank you...you're a real
trooper!! If you can remember I asked about how often to take the
temp, and BP, or any other daily vigils I should keep, please let me
know.
Hugs
Betty