My blog

http://www.ctnow.com/scripts/editorial.dll?bfromind=859&eeid=4578703&eetype=article&render=y&ck=&ver=2.8

Maybe people are off collecting pledges for our fundraiser? :)

Greetings Bill!
You wondered:
It's fairly easy, though a bit confusing to look at the message header
(usually something like FILE .. PROPERTIES ...). In this case it appears
HOTMAIL is attempting to save costs by bundling the email. Problem is not

Hi Steve,
Thanks for the update. I would love to call Anna if you can get the
number. Thanks!
Christine

Kathy,
When did you send this email??? The header says you sent it last
Monday at about 3 PM, yet we got it this morning at about 9AM.
Several people have been complaining about delayed or missing
messages, is it really this bad or is your computer clock and calendar
off? I have sent several messages and then watched to se when they

Hi all,

Dave had a swallowing study done this morning. He is aspirating but not when he eats or drinks. He is aspirating reflux. The speech therapist said she has never seen reflux that bad. He is on prevacid. When he swallows it takes him three or four times to get the food down then a few seconds later, the reflux starts. We have tried everything, blocks under the head of the bed, not lying down for an hour after eating and sitting upright in his recliner when he eats or drinks. I don't know what else to do. He has a doctors app. Wednesday and the therapist promised the results would be sent to him by tomorrow. I don't think any meds will help him if he has reflux that bad while being treated for it.

The therapist also said that it was extremely dangerous for him and that if he was to get aspiration pneumonia, she didn't think he would be strong enough to overcome it.

Please keep Dave and me in your prayers.

Take care, Kathy

Exactly first one for info. Go to heartinfo.com, they have ldl
lowering info with apheresis as part of their treatment. Many more. I
am not worried about being ignored as much as I want to help. I know
also what this suffering is.I feel the group pain and distress. I
know that some of you can get this help, if you are a candidate. It's
not a cure just a means to survive with some quality of life. Not to
exist from day to day in absolute pain.It is also infuriating to see
the medical community not readily help. I know "my girls", apheresis
techs went to a big medical conference in denver, where they were
told just how widely accepted this treatment is all over the country.
a lot to do with not informing the patient has to do with ignorance,
and money. BIG MONEY
surgery, etc.My triglycerieds were at 20,000+ and cholesterol stayed
at 1100*, glucose at 960. Dr.'s actually were yelling at me to stop
eating fats. Unless I could swallow gallons of cooking oil
constantly, what else could explain this? No one would help or
listen, until I found my angel of a Dr. By the way can anyone get so
much fat down? I don't think so. anyway I was given this treatment
under an emergency basis for 6wks, 3 times a week in 94.Then once a
month. I slowly recovered enough to be able to hold down a job for 2
years and with preventative treatment once a month, I had a life for
awhile. Paula

Shana,
Lord help you girl! What a story! Try "acting from - rather than reacting
to". Take care of yourself and don't bother yourself with your sister, who
obviously doesn't care very much about your feelings or what you have done
for her. Don't let her use you or screw with your emotions. From what you
said ,she is a user (or abuser) of your feelings. Live your own life with
your husband and friends and concentrate with your own wellbeing.People who
try to hurt you and put you down (family or not) are not worth considering.
Good luck and God bless you,
Wishing all a pain free day, Aloha,Rich.

Hi all it's Steve, it.s been a couple weeks since I have posted. Tam is out
of the hospital now, but that is not why I am posting. Tam talked to Anna
today and she is in the hospital with another attack, she went in last night.
I guess taking her gall bladder out didn't help. They are sending her back to
U of M. Friday to put another stent in. Prey for her !!!! If anybody wants
her phone # to her room let me know and I will get it from Tam. I will keep
you updated.
Your friends Tam & Steve

Dear Jerri,
Thank you for your reply. My husband also has balance problems but is not
yet using any type of assistance. He still works each day and works out
when time permits. I can, however see the disease progressing before my eyes
with each passing day. He started showing slight balance problems about 3
yrs ago and we thought it was age (53ys old). He is dropping things and his
speech is getting more difficult to understand. Although I thought my
husband was progressing rather rapidly, it seems that your husbands symptoms
have progressed even more rapidly. When did his symptoms begin? My husband
is taking NAC and COQ-10, which are over the counter. He is not taking any
prescription medication. He saw Dr. Gilman in MI in Jan. of 2001 and he
confirmed the diagnosis of OPCA, saying that 25% develop in to MSA. His
blood pressure remains normal and we are keeping our fingers crossed. We are
praying for a miricle and cure. God Bless.
Jeanie

This was a letter to the editor found at this website:
http://www.washingtonpost.com/wp-dyn/articles/A42020-2001May3.html
Take care, Bill and Charlotte

Hi all,
Many MSA, CBGD and PSP patients have dystonia. Dystonia is a neurological
movement disorder characterized by involuntary muscle contractions, which force
certain parts of the body into abnormal, sometime painful, movements or
postures. Dystonia can affect any part of the body including the arms and legs,
trunk, neck, eyelids, face, or vocal cords.
It is interesting that I ran across a brochure on it, on the grocery store
bulletin board today. One of the cartoonists for the newspaper comics or a
family member must have it. They have a meeting in Chicago over the Memorial
Day
weekend. I noticed that they have local support groups with exercise classes
just for that problem.
Check it out at:
http://www.dystonia-foundation.org/
Take care, Bill and Charlotte

Our fundraiser in honour of our 500th list member has now recorded $5,870 in
pledges to various MSA charities!
Do you think we can reach $10,000? Every pledge can help no matter how
small. We won't share the amount
you pledge with anyone. Several people are asking family, friends and
colleagues to donate as well.
If you'd like to pledge you can send a check/cheque to any of the charities
below. I've included charities in the UK,
Australia, Canada and the US, those in other countries may wish to donate to
the Parkinson's Foundation in your country.
If you want it to count in our total please send a note to one of our
volunteer pledge counters and let us know.
Thanks!
Bill Werre b.werre@...
Cindy Vargas cav285@...
Pam Bower pbower@...
UNITED STATES
Vanderbilt Shy-Drager Research Fund
Vanderbilt University Medical Center
AA-3228 Medical Center North
Nashville, TN 37232-2195
http://www.mc.vanderbilt.edu/gcrc/adc/sdfund.html
National Dysautonomia Research Foundation
PO Box 211153
Eagan, MN 55121-2553
www.ndrf.org/contributions.htm
Mayo Foundation
Development Department
200 First Street, SW
Rochester, MN 55905
www.mayo.edu/develop/give.html
SDS/MSA Support Group Inc.
2004 Howard Lane
Austin, TX. 78728
www.shy-drager.com/
(501(c) tax status pending)
National Ataxia Foundation
2600 Fernbrook Lane, Suite 119
Minneapolis, MN 55447
www.ataxia.org
Ataxia Clinic
University of Michigan Health System
1500 E. Medical Center Dr.
Ann Arbor, MI 48109
www.med.umich.edu/neuro/ataxia.htm
National Parkinson Foundation, Inc.
Development Department
c/o Marc Lichtman or Lois Heffernan
1501 N.W. 9th Avenue
Miami, Florida 33136-1494
www.parkinson.org/helpnpf.htm
National Organization for Rare Disorders, Inc.
P.O. Box 8923
New Fairfield, CT 06812-8923
www.rarediseases.org
Michael J. Fox Foundation For Parkinson's Research
Grand Central Station
Post Office Box #4777
New York, NY 10163
www.michaeljfox.org/flash/donations.html
The Parkinson's Institute
1170 Morse Avenue
Sunnyvale, CA 94089-1605
www.parkinsonsinstitute.org/index.html
AUSTRALIA
Parkinson's Australia Inc
c/o- Parkinson's New South Wales Inc
Concord Hospital,
Bld 64, Hospital Road
Concord, New South Wales, 2139
www.parkinsons.org.au/
CANADA
Parkinson Society Canada
4211 Yonge Street, Suite 316
Toronto, Ontario M2P 2A9
www.parkinson.ca/donating/donating.html
UNITED KINGDOM
Sarah Matheson Trust
Neurovascular Medicine Unit (Pickering Unit)
St. Mary's Hospital
Praed Street
London
W2 1NY
glaxocentre.merseyside.org/msa2.html
Adrienne Coles Memorial Trust
c/o New Information Paradigms
Manhattan House
140 High Street
Crowthorne
Berkshire
RG45 7AY
www.coles.org.uk/about.htm
Parkinson's Disease Society
215 Vauxhall Bridge Road
LONDON SWIV IEJ
www.parkinsons.org.uk/

In a message dated 1/31/01 9:19:02 PM Central Standard Time,
hominid2@... writes:

I have it due to a birth defect in the pancreas called a pancreatic divisum.

hi kimber. sorry to see another soul added to the list, but glad you have
found us. we will learn as much from you as you will from us. anytime you
want to just talk - we're here. debbie (ark)

Hi Christine,
Thanks for caring. I did get my GI doc to call me in vicodin. Then
the yeah-who (my special word for stupid) pharmacist said he had to
call my doctor back and "double check", because I had my script
filled on the 4th, and I should still have some left. I keep telling
these doctors that regular vicodin isn't helping, and I need to take
2 at a time, most of the time. The pharm. said that he OK'ed me 20,
but he was going to check with my primary doctor. I was so upset! I
had JUST talked to the GI guy, and he knew I was out, and he told me
he would call it in, so why does the pharmacist had to give me a hard
time. Why me? Thanks for asking. How are you? How is your week
going? I got called into work tomorrow. Yeah! Maybe playing all
day with the kids will keep my mind of my problems. Lets hope so!
Love ya too,
Linda

I was wondering if some one could tell me how many cases of MSA
there are now, if known. Also does's Medicare help pay for Oxygen if
it is a portable one that the doctor has ordered. Iris is needing a
little help with breathing some time during the day. She is so very
tired.
Thank you so much'
Earl

Earl,
Estimates run from 40,000 -150,000 cases in the USA. They know that MSA is
under diagnosed, but they do not know to what extent. It could be as hign as
10% of the people diagnosed as PD.
If your doctor prescribes oxygen - Medicare should pay for it - you must use
an approved Medicare vendor and they should help set up the Medicare
payment. However, your doctor needs to do the paperwork on describing the
medical need for the patient.
Take care, Bill and Charlotte

Are there any clues as to how long the attacks can last?

I don't remember anyone saying anything about this, but looking at a
bunch of different sites, trying, currently, to check by cross-
reference my wife's symptoms with typical ataxia symptoms (don't tell
me, I know that there could be crossover), I found something about
Myoclonus.
It defines 'normal myoclonus' as hiccups and sleep jerks (falling
sensation).
This is at
http://www.ninds.nih.gov/health_and_medical/disorders/myoclonu_doc.htm
if you are interested.

Teresa,
The nothing by mouth is normal, in fact, they usually don't even allow me ice
chips.
Anything in the stomach irritates that pancreas even more when an attack is in
progress. Sometimes,
people only have one case and sometimes they have repeated cases, eventually
becoming chronic. I don't
think the doctors know why most of the time. The two most common causes are
alcohol abuse, cystic
fibrosis and/or a high fat diet (lots of butter, fried foods and other fatty
things), which is why the
ER doctors frequently badger us about whether we drink or not. However, there
are plenty of us out
there who continually get it with no idea why. The pancreas is not a very well
understood organ,
unfortunately. There are also some medications which can cause it. However,
once you have a case of
pancreatitis, you are more vunerable to all the things that can cause another
case (basically, you
then become twice as likely to get it again than someone who has never had it
before.)
Happy to give you any help in any way we can, that's what this support group is
for.
Kimber

Pancreatitis-unsubscribe@egroups.com

Hi Carol,
My father tried Provigal. He has been taking Cylert for a couple of
years. It has been less effective lately, although this may be
disease progression. Cylert is most often used for attention
disorder deficit. The Provigal was not as good as the Cylert for
Dad. He slept most of the day while on it, so we went back to Cylert.
Everyone's different!
Jane Koenig

You know, you are so right. I took her, yesterday, to the hospital, and they
found the potassium very low. They are helping her for recurrent aspiration
pneumonia (she is septic, now). They don't hold high hopes, but I am
probably unreasonable in thinking she has been through too much to give in to
this thing -- she is way too tough, and I see many reactions in her, even in
the shock state.
I talked with her neurologist today and asked for a 'job' doing research for
him on OPCA. I suppose it would be better to have someone that knew all
about it (and I am looking into such a person), but it allows me more access
to search places I can't get to -- he is asking the hospital library for key
articles on OPCA. I certainly don't know, at this time, if this will get me
things I can't find for free, public use, online, but it is a try.

Click here: Home Page Menu debbie (ark)

In a message dated 1/31/01 8:38:42 PM Central Standard Time,
spldrinc@... writes:

Please read about APHERESIS treatments you are perfect cases. My
messages 11646 Let me know. i can't believe I've had this posted and
tried to implore any one of you seek some interest. This is a
preventative as well as an emergency solution for our pancreatitis
attacks. It is hard for me to realize that pain meds and iv's and the
inability to have help is chosen over some investigation into this.
I'm so puzzled. I must have 3 messages about this and not one
response I don't get it. Paula

paula - i don't know about any one else, but i just have not had a chance to
even read the information yet. it is not that i am not interested - but just
have not had the physical or mental state of mind to do anything about it.
don't think that everyone is ignoring you. we all have to do things in our
own time. debbie (ark)

John,
Thanks for the input. Rob tried ritalin for a couple of months and
found that it did not make any difference. We're hoping that the
provigil will be more effective.
Carol & Rob

Greetings Carol!
I do know many people (over at alt.support.sleep-disorders ) that find
benefit from use of ProVigil. It appears to be a better alternative to
Ritalin - the other drug used to help narcoleptics. However, like any
medication it's not for everyone. So, I would recommend Rob try it to see
how he does with it.
Regards,
=jbf=
John B. Fisher

Andy,
If your wife is unable to move anything be sure and have her Potasium
checked. My husband spent five days in the hospital with extremely
low potasuim. He was stiff as a board, unable to feed himself (his
hand and arms would draw up) and very difficult to dress him and move
him. Good luck,
Erma Dean

Julie,
feel free to ask any questions regarding diabetes you want, I've been diabetic
for 20 years. If I
don't know it, I can probably find out (working in the healthcare industry does
have it's
advantages). You may wish to join the American Diabetes Association, if you
haven't already. With
your membership, you get a subscription to Diabetes Forecast, which almost
always has something useful
in it.
Kimber

Sue,
Thanks for sharing your mother's experience with Provigil. I hope it
helps Rob to shake the cobwebs out of his head. That is one of the
few things he really complains about. Before he became ill he was
always very high functioning mentally, and he can't bear not being to
think and communicate clearly.
Carol & Rob

Hi Carol and Rob, My mother is on Provigil and she is alert for the
most part during the day. She's on 200mg 2x a day 7am & 1pm. Before
Provigil she was sleeping most of the day and at night too.
Hopes this helps.Sue

Hi gang,
Rob saw his sleep neurologist yesterday (she's the one who diagnosed
him 3 years ago) and she asked him about daytime sleepiness. He
doesn't really have excessive daytime sleepiness, but he
feels "foggy" a good bit of the time. She thought he might benefit
from a medication called provigil (aka modafinil) that is used to
treat narcolepsy. She felt it might be helpful with the "brain fog"
that he experiences, and mentioned that she has had some success in
treating Parkinson's patients with it for slowned cognitive process.
He'll start talking it tomorrow morning, and I'm just wondering if
anyone else has tried it. I don't recall seeing it mentioned here
before. In any case, I'll certainly report on it after he's taken it
for a couple of weeks.
Carol & Rob

Shana,
It definitely sounds like your sister is the type of person who cannot take responsibility for anything and is always blaming it on someone else, true or not.
I've known some people like that. It doesn't matter what the problem is, it is always someone else's fault.

The journal sounds like someone who's trying to get on one of the extreme talk shows like Maury, etc. you know, cheating spouses meet the the lover, etc. type.
Unfortunately, we can't pick our family. You hurt because you're a caring person and want to love her and so it hurts having that love thrown back in your face. The heart, I've learned, is ever hopeful and can often get trampled in the process.

Kimber

Pam,
I signed this when there were only about 500 signatures. It is amazing to me
that this news story was totally covered up by the news that Bush had promised
$200 million for AIDS research.
Take care, Bill and Charlotte

I am new here and am really just wanting some answers. My grandfather
was diagnosed with Pancreatitis about a month ago and has been in the
hospital (although not a very good one in my opinion) since then. The
doctor has not let him have anything by mouth since then (other than
ice chips to keep his mouth moist). Is this normal? What is the long
term prognosis of this disease?
I admit I am not helping with my grandfather's day to day care as I am
in Iowa and he is in Virginia, but I do want to at least understand
what is going on. From what my mother says, he doesn't seem to be
getting any better. The doctor has kept a tube down his throat to
pump acid and all from his stomach and they have been giving him some
sort of nutrition (intravenously I assume). The doctor has also been
doing CAT scans about weekly to check the condition of his pancreas.
There had been some improvement until the most recent one (done
yesterday I believe), but I really don't know how much.
Thanks in advance for any info you can give me.
Teresa

Forwarded from the Parkinson's Listserv:
Ilyce Randell (Canavan Mom)
posted May 09, 2001 12:35 AM

I know I signed this petition and I hope many of you had the opportunity
to do so as well. It was presented to US government officials last
week. It's great to see so many scientists are backing this research.
Regards,
Pam

Hey Teresa,
I have had thyroid problems since the birth of my second child, I was 24 at
the time.
The docs told me that I had to take synthroid for the rest of my life. I
didn't listen and I should have. Since I neglected to take synthroid my
pancreas took over when my thyroid stopped working and worked itself into an
attack.
Carmen

In a message dated 1/31/01 9:38:42 PM Eastern Standard Time,
spldrinc@... writes:

Please read about APHERESIS treatments you are perfect cases. My
messages 11646

Hi Paula,
I have searched for that message and I couldn't locate it. I was getting
ready to ask you if you still had it in your files to please forward it to
me. Sometimes I don't get every post.
Carole

Not sure how many of you are subscribed to 'ask the doctor' an email
question & answer list by Dr. Abe Leiberman of the National Parkinson's
Foundation. I got this in yesterday's email. Some of you may find it
interesting.
Barb K

Jean: Sorry nothing is helping. I hope the GP has something that will help
Chrissie. Will keep all of you in our prayers. Hugs, Judy

Hey Teresa,
It was a blood test when I knew it was my thyroid. I worked at both hotels,
the one where the van was found and the Holiday Inn where the escaped cons
were caught. I was security there awhile back before I got paralized with
this illness.
I used to guard heavy equipment and construction sites as well as a few
hotels and other private companies.
Carmen

Hi Judy,
Yes, I am trying the Acidophilus capsules. I am putting it in everything.
She has taken her last dose of Diflucan tonight and her mouth is still
terribly sore.
We have an app't with her GP tomorrow, I hope she has some answers.
Thanks for your help.
Jean and Chrissie

Please read about APHERESIS treatments you are perfect cases. My
messages 11646 Let me know. i can't believe I've had this posted and
tried to implore any one of you seek some interest. This is a
preventative as well as an emergency solution for our pancreatitis
attacks. It is hard for me to realize that pain meds and iv's and the
inability to have help is chosen over some investigation into this.
I'm so puzzled. I must have 3 messages about this and not one
response I don't get it. Paula

Bill when I send to the list it can now take a whole day before see it on
the list.
later and hugs,
cindy

Beautiful pictures Bill Thanks for sharing.
Barb [INLINE]

--
"The Amen! of nature is always a flower." Oliver Wendell Holmes

whats this over 5000 and pakinsons cant raise only 1000 o phewy...........bt

suppose it would help if I actually added the damn url's huh? My mind is like sieve.

the most recent one

http://www.opendiary.com/entrylist.asp?authorcode=A297373

older one

http://www.geocities.com/lolaland2000/journal.html

Dear Friends

Hello, Its just me again. I just needed to get some crap off my shoulders in rergards to my family, specifically my sister, again.

I don't understand how she has the power over me to keep hurting me. Generally, she doesn't it just seems like at times......

I found out my sister keeps 2 journals on line, on the internet, where anyone can read them.

One is older, back from when she was living here filled with rantings about what awful people were are, how we wasted our money, never bought groceries, ignored her....all the while she was living here for free because she had no job and had just fled an abusive relationship and had no where else to go.....

And there's a newer one, thats mostly ramblings about how unhappy she is. But there is one part in it blaming me for a lot of things that went wrong with our family like my parents marriage breaking up. I'll cut and paste it here for you to see.

But before i do i Just want to give you all a bit of history on my "family"

*My parents marriage ended because my father cheated on my mom for 8 years and lied to her about it the whole time, then just left one day and never came back.

*My sister ran away to the US with a guy she met online because I was going through a severe depression at age 15, due to the chaos our family was in because of my father and a past trauma of being raped at age 8, and "was making her life hell" for my sister. She left my mom with a 700$ phone bill and a maxed out visa my mom had co apllied for with her so she was able to get.

*My sister refused to come home the 3 months my mom was in the hospital dying of ovarian cancer, or even when she died, because her husband didn't want her too, and because she said she "Couldn't handle watching her mother die"

*She also refused to answer any phone calls for the last 2 month from me because "she couldn't handle hearing how much worse mom was getting"

*My father disowned me because I couldn't, for emotional reasons, make myself go to his wedding, and watch him exchange vows with the woman he had cheated with on my mom for those 8 year, after my mom had only been gone 9 months. Not without causing myself a lot of pain and feeling like I was betraying my mom. He said to me "I don't care what you do, just get the F*** out of my life."

*My sister agreed with my father and after the wedding moved in with him after she lived off Rich and I for 6 months. She then wrote me a letter saying I had caused my moms death with the 8 years of hell I put her through (I guess she means the years i was sick) That I was such a horrible child that I drove both her and my father away and broke up our family, that I was blind, selfish, manipulative, a liar, thief and would never amount to anything, that she loved her family but she just couldn't stand me, and that it was no wonder that the only person who wanted to be around me was a useless hideous troll of a man (my fiancee)

All this coming from a person who's 32, (10 years older than me) weighs over 400 pounds, is on welfare, never went to college, is living with her father and stepmother who (showing how much loyalty she has towards her own mother) she has called mom since she met her.

Her only relationships have been over the internet with men cheating on their wives, who are in their 50's. She met one once when she was in the hotel after running away from her husband and had a one night fling, after which he wanted nothing to do with her.

And she says she hates me becauses of the kind of person I am.

Anyhow, here is what she wrote in her journal about me. This is copied word for word.

*Been thinking about choices I've made in my life a lot too. Like my sister ... and the fact that we have shut each other out of our lives. It's hard to admit that having my sister in my life is a destructive thing for me. Her own problems cause a great deal of pain and chaos in the lives of those she tries to control. But I do miss her. She is my only sibling. I helped raise her as I was 10 years old when she was born into this world. I wish I could put my finger on when exactly she started becoming a "troubled child". I know that awful, tramatic things happened to her at a young age - but I remember her manipulative nature even before that terrible summer. It just got worse after that. My sister dictated the flow of our family. My mother gave up everything for her. Including her marriage and her relationship with me. My own health deteriorated trying to keep her sane and happy. I ran away into the arms of the first man who would have me just to escape the hell that was my
home at the time. *sigh* Then during my mother's death I was pulled back and forth between my sister's guilt trips and my husband's manipulations. Subseqently I lost the chance to say goodbye to my mother. Something my sister uses every chance she gets to remind me what an awful person I am. Still ... I miss her. Maybe someday I'll have the inner strength to re-establish a relationship with her on my terms. Until then, I think the healthiest thing I can do is keep the distance between us.*

When I read this it hurt like hell. It even made me cry, which it takes a lot to do these days. I don't know why. I guess just even the thought that i was responsible for breaking up my family, even though I know it's not true.....

I mean it is impossible for someone to MAKE someone else guilty. No one has the power to MAKE someone feel anything. There has to be some underlying reason that a person feels
guilty about something, and that reason only has to do with one thing. Themselves. Either something they did, or said, or a decison they made, or
regrets they have...but no other person can cause it.

Everyone I show this too says its obvious that my sister is just trying to blame the consequences of her bad choices on others. I know this-but it still hurts. What hurts most of all is just knowing my family hates me, and the fact that they are believing all this nasty stuff my sister is saying about me to them. My father even tells my grandmother and uncles this stuff. Thats what really hurts. That he's allowed one daughter to pit him against another, which I think was my sister whole plan all along.

But really, who needs a family composed of people like that in their lives? I have enough stress as it is.

I'm going to end here, but before i go, I wanted to add something. The url's of my sisters internet journals. Just in case you guys ever wonder if I am making this up, or if you're ever really bored. And I would love to know what you think. My sister tries to take her life and make it into a novel. A drama/fantasy at that, so it's never dull, I'll give her that. So if you ever have a bit of extra time, scroll thru for a bit and let me know. Everyone who has read so far has told me it definitly sounds like she needs mental help. Just the fact she chooses to keep a diary on the internet where ANYONE can read it is a tad abnormal.

Anyhow, Im off. Take care

Hugs

Shana

Dear Becky,
I was just wondering what happened? Is something wrong that you are
taking a sabbatical?? I hope that we will hear from you soon!!!
Elizabeth

Elizabeth,

Thanks for asking...... I am ok, I just have a million things going on with my life right now, including trying to buy a home, a new Rheumotologist appoinment, new health issues, church stuff.......ect. I just can't keep up with myself right now let alone the group and that is not fair to you guys. I miss half the posts and whne I go to write someone back I forget.........
I am not unsubscribing, just taking a break till I can be a better member. I am still reading posts.
I am so glad you are working again and doing better.

Becky

Hi Bill, I have been having problems sending emails for about two weeks. I recieved three status delay email notices in one night. Today, I have sent two emails and only one has returned to my email list.

Take care, Kathy

In a message dated 1/29/01 4:34:47 PM Central Standard Time,
sunflower6668@... writes:

Hi Deb,
No, I don't have one, but my hubby asked the same thing. Wow, that
might mean that would have to classify this disease as debilitating!
What a thought!
Be well,
Christine

i think i'll check on my state of arkansas pages and go through some things
and see what i can find out about how you apply for one & get it etc;.
debbie

Hi Andy, welcome to the group. I have been with the group for a few months. My husband has MSA. There is wonderful people here that has been a blessing to Dave and me. I have learned a lot from them.

I am sorry that you have to be here. As a caregiver, I know how heart breaking it is to see your loved one fight this disease. Just remember that life expectancy is longer that most research paper shows and the most important thing is to make the most of each day you have. We are all here for you.

Take care, Kathy

In a message dated 1/28/01 10:42:26 PM Central Standard Time,
liamhoha20@... writes:

Hi Anna,
Thanks for the info on paxil. A really good friend of mine also said
to ask my doctor for it. I already have it on my list of questions.
Thanks again. How are you doing?
Lots of Hugs, Linda

linda - they will have to find which particular thig is good for you. my
husband took paxil and something else before he went on the prozac and they
would not work for him - - it is different for all. they may have to try
you on several things. debbie (ark)

Note that the drug they are talking about is pramipexole which is marketed
under the name Mirapex. Is anyone on this list
currently taking Mirapex?
Regards,
Pam

high tri's and pancreatitis attacks PLEASE REFER TO MY MESSAGE
#11646 "APHERESIS" this is an effective treatment to help control
pain and damage to your pancreas. It is also an accepted form of
"preventative" treatment for pancreatitis and or high numbers. It
helps prevent burn out and aids in controlling diabetes and heart
problems. Most major cities offer this program. I go to west Penn
hospital in Pitts. University of Pittsburgh has an entire center. As
well as major hospitals. Get the right doctor or I will try to help
you. Most specialists are just that- specialists in their fields
ONLY
surgery, helps you to get off pain killers and cuts meds. etc Paula

Watch out for impaction. It is dangerous and miserable.

Barb in Arlington [INLINE]

--
"The Amen! of nature is always a flower." Oliver Wendell Holmes

Hi everyone,
Regarding publicity about cp did anyone else notice the Associated Press
obits today. In the Honolulu Advertiser it had a headline banner
"Bleyfary,1965 AL Rookie of the year, Dies at 57"
The story goes on to say that he died of chronic panc. after a long and
painful illness! According to his widow, Lana "It's good that his suffering
is now over!"
He lived in Pompano Beach Florida.
Anyway, although it is very sad for his family, maybe it will generate some
media attention (like Mantle's liver transplant did).
Hope everyone is having as good a day as possible.I'm in the middle of an
awfull
attack and must take some more meds and go and lie down.
Aloha Rich.

Bill - a couple of weeks ago I, too, was not receiving messages that others
were receiving. Then, two days later, there they were! I had not changed
servers, same computer, etc. Since then, everything has been fine...strange.
Yours will probably all appear at once - all 100 of them!!!! Frustrating, I
know. Thanks for ALL of your helpful advice!!
Elaine Grimmesey
Insurance Coordinator
Student Health Service
UC, Santa Barbara
grimmesey-e@...
805 893-2086

I think it is a great idea. Everyone else has been on with their situations.
I think it is a great way to get the word out about the disease.
Sincerely, Alicia

Linda,
Wow! How terrible for you to be in sooo much pain and no one wants to help
you! I can relate to you when doctors throw their hands up and say, We
cannot do anything else for you! You know what I did? I finally got mad and
changed my doctor. I am on my 3rd G.I. And I found a good one. However, he
is so good that he is leaving in February to be the Head of "Something" in
New York. Damn! Anyway, can you find another doctor who will listen? I am
also on my 2nd Internist who said he would be a part of my "team" of doctors
to help me out. I really think that with pancreatitis, one needs not only a
G.I. but also and Endocrinologist, because of the endocrine/exocrine nature
of the pancreas.
Also, this might sound stupid, but is there another E.R. near to you? I have
2 hospitals from which to choose. Maybe another hospital would treat you
more nicely?
I too am tired of people being blase' about my disease. Oh she is in the
hospital again. It pancreatitis again. It does get rather depressing when
you drive yourself to the E.R. and back. At least that is my situation.
Sorry for whining!
Well, start firing those doctors who do not treat you correctly! You deserve
better care! This is my battle cry! I hope it helps?!
Take care of yourself. And I hope you get good treatment soon. Especially
look after the blood in the stool thing - that you really need to look into.
Hugs to you, Staci

Hi all,
Has anyone else missed messages? I noticed that some people are replying to
messages that I never got. So I went on the website and compared messages,
since last Friday I have missed at least ten messages that the website got. It
is strange that I often do not get even a message I send to the list for as much
as 90 minutes also. I never remember it taking more than a minute or two to get
a message from the egroups server.
Has anyone sent me a note and not gotten an answer (granted I am not checking my
email as often right now so it may take 24 hours to get a response). I am
trying to figure out where the problem is as I changed to this ISP only weeks
ago.
Take care, Bill and Charlotte

In a message dated 01/30/2001 4:25:04 PM Eastern Standard Time,
hominid2@... writes:
<< Julie,
I'm a new member and I am also on Niacin for my cholesterol.
I think the severity of flush varies per person,plus how the doctor
starts the patient out on the medication. Originally, the doctor put
me on another medication (Zocor) for cholesterol and I had such a
severe reaction to it, I was told to stay away from the whole family
of medications (it put me in the hospital for 3 days with a pulse rate
of 140 along with every other side effect listed for the medication).
My doctor started me out on a really low dosage of Niacin and had me
build up to the minimum dosage over a period of 3 months so the rise
in flush was lower than starting out on the minimum dosage of 1500 mg
at the beginning. I started out on 100mg and built up from there. That
way,my body got used to it. I also spread my dosage throughout the day
so I'm only taking 500mg at one time. That also helps minimize the
flushMine have not been too bad, but I also think my body is kind of
used to flushes. I'm very fair skinned and I'm diabetic and when my
bloodsugar gets high,I get a very similar flush, so my body regards it
as normal, since I've been diabetic for twenty years. It's the kind of
medication I would only recommend for people who've had similar
flushes before and can handle it.
Kimber
Hi Kimber! Glad to hear from you. :) I didn't have much choice but to
start out hot and heavy on the niacin because my triglycerides were climbing
rapidly again. When I was in the coma, my tris were 4000 and at the time I
started all of these meds, they had reached 3000 again and we were really
worried. I am now on Zocor as well and seem to be tolerating it
okay.........so far!!! I was on lipitor before starting the niacin but it
caused me severe muscle atrophy and I had to stop taking it. I had just
learned to walk again after lying in a coma for nine and a half weeks and I
wasn't about to let something keep me from walking. I had worked WAY too
hard to walk again. :) I asked my doc about taking the niacin periodically
throughout the day, but she seemed to think that it would work its best for
me if taken at night. I am taking 2000 mgs a night currently and I think the
lowest I was ever on was 1000 mgs. So, we had to jump in with both feet!!!!
I was just recently diagnosed as diabetic and just finished taking my
recommended courses at our hospital. I flush too when my sugars are
high.........and here I just thought they were hotflashes all this time ha
ha ha ha ha
Thanks for your input though, I appreciate any ideas that I can get!!!!
I will probably drill you with diabetes questions now...........look out!!!!
hee hee
Again, it was nice talking to you!
Hugs,
Julie

Hi everyone: Since yesterday Bob is having a problem with his bowels. It
seems when he has the urge to make a b.m., a lot of water comes out &
just a few chunks of b.m. This happened twice yesterday & once so far
today. Is this another symptom showing up or an infection? I have a call
into the doctor. Thanks for your reply. regards, jerrie

Anna-
My doctor put me on Celexa. I tried to wean myself off of it and try
Wellbutron because Celexa causes painful joints (that is one of my symptoms,
someone else may not have this) But one of the side effects of Wellbutron is
seizures ( All the doctors say this is rare) My husband has seizures and I
am the only one in the house that can drive. It is a responsibility issue
for me. Also, when I tried to get off of Celexa, my nerves were so frayed.
So I just thought I would wait until the summer to change things.
Even though you might feel bad, things will get better! My doctor says that
it takes up to two weeks for the anti depressants to kick in. So hang in
there!
Good news for me - After a painful weekend, I went into the E.R. to get my
blood tested for pancreatitis. Well, my enzymes were only in the upper 500s,
so the kind doctor did an ultrasound on my gallbladder and THEY FOUND
GALLSTONES! Could this be the reason for my 20 years of pancreatitis. Plans
are in the making for taking out my gallbladder. I really hope this will
help..........
I hope you are feeling a bit better.
Love, Staci

Dear Andy:
I am also a new member of the group, and they are wonderful! Like Jeanne I
am at present a reader, as I work full-time, but I must have my fix (this
site) every day. I print everything, then give my husband Felix what I
think would interest him, and keep all the rest. One day I will write to
each of you who have helped me - I have already written to Jill and Kathy
(bless them!).
Is there anyone in the group from Miami or South Florida? What doctors do
you see. Very interested to know. Can tell you some hair-raisers when I
get the chance. MSA patients are sometimes treated like "throw-away" objects
- not worth the trouble to keep.
Thanks to all of you, and Pam, I will give you Felix's data soon, and I have
an idea for publicity which I will share when I have been given the
go-ahead.
God bless all of you - I'm glad I found you,
Ruby.

Hi Ruby: Welcome to the group, but sorry you have to be here. This
whole family is so amazing...i have learned practically everything i
know about msa from them. My husband, Bob, was diagnosed in Aug. 2000,
at Jackson Memorial Hospital by Dr. Koller. He also saw Dr. David & Dr.
Weiner. He has the OPCA form of MSA, so far. By the way , we live in
S.FL..near the Coral Springs, Pompano area in Margate. Where do you
live? Looking forward to your reply.....regards, jerrie p.s. you can
email me personally at: Deenzer@...

Hi all,
Got some news from downunder in Oz (Australia). Our Anne was riding her
grandkids horse the other day. Nothing can keep her down.
Great news this morning, in spite of her problems with her stomach, she
got a distinction (excellent) on the course she just finished. Pretty
good for someone who was given a year to live 22 years ago. She
graduated from college in 1999 with a degree in social work - you can
see her graduation picture if you go to my webpage at:
http://members.spree.com/health/bwerre/
and click on "Click here for more SDS friends!"
I will try to add the picture of Anne on the horse in the next few days
Take care Bill and Charlotte

We have seem a number of emails relating to Andy's recent arrival on the
list. As a relatively recent arrival myself in the MSA world, I would like
to offer a few observations.
Andy, I believe you said you were in a "panic" as a result of your arrival
into the world of MSA. I would suggest that "when you hurry up, it takes
longer." Try to back off and be cool. There are many resources on this
list and on the Internet. People here are incredibly helpful; their
empathy stems, in part, from their own personal experience with MSA. They
will help you; but, you can also help your self.
There are archives on the list and an incredible number of MSA sites on the
net. Research these sites and focus your questions on your particular
needs. You have already seen solid comments and suggestions from several
list members. Based on my experience, more will come
Believe me, I can appreciate your panic; I have also been there. I, too,
appreciate the "scientific manner" you like to follow as I was trained that
way in my professional career. MSA is a not a well structured problem that
can be solved with intense effort. Rather, it is a challenge to be
continually managed for a long time. There is no cure. As others have
pointed out, MSA's manifestations are different for each afflicted person.
And so, your situation is unique.
I am not a pessimist, but rather an optimistic realist. Ongoing management
will be helped immensely by ongoing learning by all of us and yourself.
The list has done a great deal to help me in my struggle up the learning
curve of MSA and I am sure I have a long way to go. I am certain you will
find it very helpful, but you can be your own biggest resource.
I wish you well in your efforts. Good luck and God speed!
Perry Sennewald 804-244-0018

Jean: Have you tried Acidophilus? Jack uses the flavored chewables that
could be crushed and mixed with applesauce. I hope you find something that
helps. Thanks for the wish for Mothers Day. I hope you had a good Mothers
day also. Hugs, Judy

Hi Everyone:
Haven't been posting lately, been really down and kind of
bitter.Guess it's caregiver burnout right now. So I'm doing what ever
American kid does when thing don't go the way they want, I'm running
away from home for a few days, but I'm taking Fred with me. Thing
haven't been going to well here the last few days and I think we both
need to get away. Fred told me that he has all these job's around
here going and only getting them half done, before he starts another
one because as long as he has all these things going and their not
done, he won't die. So I'm taking him to away for a few day, enjoy
something instead of just trying to work. So we're going to YES! Pam
you home away from home and what my Pastor calls Sin City Las Vegas .
Fred sister lives there and we haven't seen her in I don't know how
long. Driving always does me alot of good, and maybe the change will
help Fred out of his low mood. Anyway just wanted to let you all know
what is going on.
Kathy sorry I didn't get back to you on Dave, but I see that Barbara
Smith and Judy both helped you out about the UTI. JUdy also wrote to
me and tolded me I may have to use the cathater on Fred more then the
6 to 8 hrs. She was right, been having to do it as often as 4 to 5
hrs. Seem to be working good for us.Boy am I getting good.
Jerry Cash I agree on what you said about Johnny Cash 100% , but
don't tell anyone.
Barb thanks for the web's you put in, will look at them when I get
home.
Take Care everyone, will see you when I get home.
Hugs Vera

Hi everyone,
I just wanted to let you all know that I am still around. Thank you
everyone who asked about me, it means so very much.... As I said before, I am
back to work and then go to therapy on my off days. I work 13 hour days and
when I come home I am dead tired. Then on the physical therapy days I have to
do the laundry and household stuff that I keep getting behind on. I can't
tell you how tired I am...
I am still having the pain under the ribs on the right side. I am so
frustrated. I am a lot better since the gall bladder surgery. I do have to
admit that. I just wish this nagging pain would go away. I'm so tired of
being uncomfortable. On top of it I have the sciatic pain from my herniated
discs. I took some illegal Motrin the other day. It helped so much!! If only
I didn't have those dang ulcers from the Motrin!!! Things could be at least a
little better...
I am still trying to get caught up on emails. I can only read so many
before my eyes start to cross. Then, the next day I am back up to over 300
messages. Plus, I am afraid to respond to the older messages because I don't
know what has been said in the mean time. Does that make sense? See, I just
have to go to bed. I can't believe a person can feel this tired!!
Anyway, even if I don't post you are all in my thoughts and prayers!!
I try really hard to keep up! Thanks again everyone...
Elizabeth

Andy,
The exercises for MSA are the same as for Parkinson's or even arthritis.
They are range of motion to keep movement rather than aerobic exercises. If
the patient can still walk - that is good, but the range of motion exercises
can be done in a wheelchair or even in bed.
Here is a movement disorder place in Sunnyvale:
http://www.parkinsonsinstitute.org/movement_disorders/index.html
Bill

Dear Becky,
I was just wondering what happened? Is something wrong that you are
taking a sabbatical?? I hope that we will hear from you soon!!!
Elizabeth

Dear Andy,
My husband is newly diagnosed with OPCA. Please don't feel like you are a
pain because some of the questions you ask are the very same ones I want
answers to. I just don't write in that much. I'm more of a reader and
enjoy questions and answers. Thank you for joining our group.
Jeanie

I don't know if this page has been sent around. This is about low
blood pressure mostly related to the idea of fainting on positional
changes, but also has a lot on this problem happening in people that
are not doing a lot of moving.
http://www.med.jhu.edu/peds/cfs.html
There is information on what to do, such as making sure there are
enough liquids and exercise being done (I guess if the person having
this problem doesn't really move around, it would still be helpful
having someone help make the movements to get the 'blood flowing'.

If Ibuprofen is used by some people for raising their Blood Pressure,
does it have other side effects to worry about, such as stomach
upset? How much seems to work? I would guess that prescription meds
would do a better job, but maybe not enough to overcome RX side
effects or costs.
Sorry I am such a pain to everyone. I just thought about her BP
because I remembered she needed help in the hospital last time, so I
bought a machine. She is way low -- and of course she is still aware
enough to glare at me at any mention of the hospital (lest you think
I am using my own interpretation, she has been more coherent lately,
and has lately even told the doctor she doesn't want the hospital
again).

Seems to me someone signed on the list recently who said they had PR experience. Please contact me if you'd like to help us raise awareness about Shy-Drager/Multiple System Atrophy.

Regards,

Pam

pbower@...

Hi Alicia,
I just wanted to welcome you to our group!!!
Elizabeth

Hi Paula,
Thanks for the advise. I don't understand why these doctors do this
to me. I should have started keeping ALL of my records myself from
the beginning. I have about 8 years of stuff to start collecting.
Maybe that will keep me busy & my mind off of my troubles. I do have
a case manager through the insurance company and I have talked to her
several times about this situation I'm in. I really need to call her
again tomorrow. I'm just about at my wits end! Thanks again for the
advise. I really appreciate it!!
Lots of Hugs, Linda
P.S. And about this finding a new doctor? There are a whole 3 GI
doctors in this City. One I had seen in the past, and the other I
hear he isn't that great. Then I'm wondering, are any of them? And
the 3rd, of course, being the one I have now. I have been to Ohio
State, and now I see Dr. Lehman at IU, the only problem there is, he
really won't do much long distance. I see him in a couple weeks &
I'm going to be sure to tell him the problems I am having! Thanks.
By the way, how are you doing?

Andy,
We have tried polls in the past and found that EVERY MSA patient is
different. Sinemet works for as much as 45% of the patients to relieve
rigidity. Florinef and/or Midodrine works for most patients with orthostatic
hypotension (as long as you get enough water and salt along with it). Muscle
relaxers and antispasm meds like Baclofen may help with the muscles that
start tying you up in knots.
If you are going to try "natural supplements" on your own, you MUST be
careful as some will drop your BP and others may raise it. There is also a
great deal of problems with dosages on the supplements as not all all
standard measurements. I would read up carefully before trying them. On
vitamin E I would not go over 800 IU at this time - 1200 may be okay - but
3000 IU can be harmful. Another supplement turned out recently to have a
poisionous level of vitamin A in it. I saw a "not to exceed amount" of the
CoQ10 recently, but unfortunately don't remember what it was. A few people
have tried it and no one has said that it suddenly improved their life.
Smoking can help your orthostatic hypotension but harms you in other ways. I
don't think caffine woulf be good for you, since MSA already damages your
autonomic body functions. MSA often causes sleep problems and that would
also be a no-no for caffine. Prescribed meds help some specific symptoms -
which ones are you seeing? Prevacid or Prilosec work well for acid reflux in
most people.
Remember that brain cells have died. These supplements will not raise brain
cells from the dead. The supplements MAY help save the cells that are still
living. However, megadoses of anything can be harmful, so you want to use
care i.e. while 5000 IU of vitamin A may help you 30,000 IU may easily harm
you. I know that fish, choline and Vitamin E are supposed to help the heart,
but have not seen scientific studies which say that they definitely help the
brain.
There have been scientific studies that say exercise helps keep movement -
but you have to exercise every day. If you have swallowing problems - a PEG
(feeding tube) can help. Balance problems call for a wheelchair.
Take care, Bill and Charlotte

I put you on too. My screenname is sunflower6668 and I will
definitely chat with you! :-)
Christine

Jean and Chrissie
I'm so sorry Chrissie has not improved and is still having problems with
yeast. Once it takes hold, it can really be difficult to rid the system
of it. I'm not sure what Anne was using when she had her last bout with
it. I'll see if I can find it in my files. It may be what she is
already using now.
It is the acidophilus that works in the yogurt and it needs to be heavy,
constant doses of it. I know you can buy it in a pill/powder form.
Once again, I might suggest garlic. It is one of the few things that
does seem to attack this stuff. It's best in the rawest form but it can
be pretty rough on the stomach and it can also irritate and make some of
the reflux more of a problem. I guess that's the good, the bad and the
ugly of it.
Of course we know that yeast loves warmth and sugar so that makes it
worse. I'm not sure if anyone has tried to use more of an acid type
rinse or swab for the mouth.
I can't remember either what they use for babies with Thrush. This
would be very similar to treat. I'll see if I can find something that
might be helpful.
Hang in there, Jean. I'm sorry things are getting worse for Chrissie.
I understand your feelings of frustration right now more than you might
know.
Happy Mother's Day Jean
Sally

Dear Linda,
I am so glad you have found your angel. That makes it bearable.
Special even. Not the illness, silly. The relationship!
Denial. Is it a good thing or a bad thing? Well, I guess it could
be both. Good because we keep on fighting. Bad because we don't
deal with it when we need to? I dunno, I think when we get to that
point, we deal with what we are able to. It just sucks thinking that
we can never get back what we lost........................
Anyway, I hope you are having good days. Monday and Tuesday have
been pretty good for me. I am exhausted, but the pain is tolerable,
so that is counted as a good day! I am not eating much yet, but,
hey, take it as it comes.......
Tell your kiddos hello and to take good care of their sweet
mother. :-) (wonder how Amy will take that news:-)
Love you,
Christine

Andy,
That sounds like she has an infection! Infection can take any form with MSA
- urinary tract, blood, pneumonia or even a yeast infection. All will
totally wipe out a MSA patient. I have included my wife's story below and an
introductory email for your info. But get her to a doctor ASAP - if they
tell you she is not running a temperature - tell them her autonomic system i
fouled up and her normal temperature may be as low as 96 deg. Temperature is
not a good diagnostic tool in MSA.
Welcome to the Shy-Drager - MSA support list. In 1995 doctors decided that
MSA or Multi-System Atrophy was a better name for Shy-Drager Syndrome,
sporadic OPCA and SND. This email is to give you some introductory
information about the disorder only. It should also clear up some misleading
info on the internet.
First of all, don't believe everything you read about MSA or Shy-Drager
Syndrome. Our experience is that you could have 27 years yet. Many people
have lived more than 20 years with it. There are new research results
published every day. So much brain research has advanced since 1993, that
there is now some hope a cure could be found in as little as five years.
Concentrate on what you can do. Exercise does help keep movement. You need
to start a daily exercise program now (everyday). In particular, you need to
work on range of motion exercises (warm-ups or arthritis type). You must
also work on speech exercises. Your volume will probably go down slowly and
you will not know it, so get Rose's speech exercises and start them now.
They are on this site

Anna, when are they going to figure out why your counts don't come
down? Let us know if you can if you go in to the hospital. Know we
are praying for you my friend.
Linda, I am so sorry you are having such a bad time. If I were you-
but you don't have luck with the er either, do you? It's a cinch you
can't wait till the 16th to get meds. I would call until I get an
answer. Make yourself heard! Be the squeaky wheel! I am praying
for you!
Love you guys,
Christine

Hi Folks,
Not much time these days between trying to keep Chrissie hydrated and fed.
Things have not improved much since she was released from the hospital.
She was put on a mechanical diet with food no larger than a pea. The problem
is, she can't eat anything unless it is mush. Her mouth and throat are so
sore from yeast infection. She has been on the nystatin, swish and swallow,
five times a day. She is now on Diflucan after another trip to the ER and it
does not seem to be any better. She has been on it since Thursday.
Does anyone have any ideas? I know that yogurt is good for it, but she hates
it. I try to sneak it in a drink now and then. She can't have frozen yogurt
either.
I think the opinion of the doctor's is that her immune system is breaking
down, as she presented with the candida before any antibiotics were
introduced.
Once again I am asking for your help and so thankful that you are here to ask.
Happy Mother's day to all the mother's and to all the mother's that aren't
with us anymore.
Love, Jean and Chrissie

Not to sound negative, Andy, but who are you? What are your motives in
creating these polls? How will they benefit the list members? Being new to
the group, proper netiquette would dictate you contact the person in charge
before you start creating polls on your own -- or you could have asked
members to contact you via personal email if they wanted to participate in
your polls and then you could share the results.
I would suggest you contact Pam.
Barb K

Michael
Just take care of yourself and write when you can. you are in my
prayers my friend.
Christine

I would like to ask members to look at the Polls area of this group
area and take part in the polls I have started.
Being new here, I don't know where information on previous polls
might be. I would like to work at these polls, and maybe add more
questions, or choices, that allow us to get more out of this group.
If anyone can think of new questions, such as general opinions of
neurologists they have gone to, or a poll suggesting what people in
the group have found to be the best doctor (or type of doctor) to go
to for their problems -- or even something complex, such as "If you
have undergone DNA testing, what chromosome pair was found to be
affected and what ataxia/atrophy was this pair suggesting?"

Enter your vote today! A new poll has been created for the
shydrager group:
Has CoQ10 worked for you in any way?
o Greatly
o Somewhat
o Can't tell
o Don't think so
o Not at all
To vote, please visit the following web page:

Who set up this poll? It wasn't me.
Regards,
Pam

This is a wonderful site. It has everything in it. Well done.
Thank you,
Liz ( in El Centro, CA)

http://www.shy-drager.com

.

Anna,
Thank you for the welcome. My pancreatitis started out similar to
your brothers, but now that it has become chronic, I am starting
to have pain on a more regular basis, especially when I eat anything
over 6 grams of fat. I have a cousin who is starting to develop
chronic pancreatitis as well. It's nice to talk to people who really
understand what you are going through. Luckily, my coworkers are
really supportive. I work for Kaiser Permanente (Healthcare company)
and my coworkers are former nurses, so they are really good about
understanding that my health comes first. I am also diabetic and have
been for about 20 years. You might want to let your brother know that
his type of pancreatitis can become like yours, where the pain is
always there. Evidently, after a while the pancreas just stays
constantly inflamed, caused constant pain.
Kimber

PLEASE PLEASE call hospital administrater, document if you remember, copy
this letter, and send with complaint to your insurance co. My pancrease is
burnt out but most of time levels in some respect show, THEY just don't know.
Once you have a file on the condition that is YOUR condition when you go in.
I've been to hell and back with doctors and hospitals. I have first hand
experience in this baloney. The reason they need a particular number,
usually amalayse , is because your insurance co., whatever it is, has a fixed
number where they will pay for treatmento the hospital.You need to get it in
writing from them. My doctor finally agreed when I'm in er I'm there because
I need to be. what happens is sometimes, I call them rolling attacks, by the
time I would get care, the numbers start to drop, then peak a few hrs later,
so on and so on. Get a new doctor as far as I am concerned. I had 7 before I
found the right one. That 's the difference. good luck. paula

Thanks again, Jim for the promising and positive news. I never get too much
of it. You're a dear.
Jeanie

Julie,
I'm a new member and I am also on Niacin for my cholesterol.
I think the severity of flush varies per person,plus how the doctor
starts the patient out on the medication. Originally, the doctor put
me on another medication (Zocor) for cholesterol and I had such a
severe reaction to it, I was told to stay away from the whole family
of medications (it put me in the hospital for 3 days with a pulse rate
of 140 along with every other side effect listed for the medication).
My doctor started me out on a really low dosage of Niacin and had me
build up to the minimum dosage over a period of 3 months so the rise
in flush was lower than starting out on the minimum dosage of 1500 mg
at the beginning. I started out on 100mg and built up from there. That
way,my body got used to it. I also spread my dosage throughout the day
so I'm only taking 500mg at one time. That also helps minimize the
flushMine have not been too bad, but I also think my body is kind of
used to flushes. I'm very fair skinned and I'm diabetic and when my
bloodsugar gets high,I get a very similar flush, so my body regards it
as normal, since I've been diabetic for twenty years. It's the kind of
medication I would only recommend for people who've had similar
flushes before and can handle it.
Kimber

more like third degree burns....OH MY GOSH. It was absolutely awful
and it would last ALL DAY LONG too!! so, needless to say, I griped so
much that they switched me to a prescription form called Niaspan
because the niacin was helping lower my tri's and so far so good. I
still get some burning sensations and have broken out in hives a few
times, but it is more bearable now.
received your posting of Jan 21 today, January 30. Maybe its a plot
to make the post office look good :-
Niaspan, & taking the Niaspan at bedtime, will reduce the flushing
sensation. That works pretty well for my husband.

I don't know if Karyn can afford it but they sell a NET APPLIANCE for $100 at
circuit city or best buy. Just for e-mailing.Paula

Hi Paula,
I think it's a great idea for everyone/anyone to write to these shows
to try and increase public awareness/education about pancreatitis,
etc.
I'll check with Karyn tonight to see if she has any ideas/input about
doing something like this as a "group" from Pancreatitis Support
Network. In the meantime, if you'd like to draft some kind of cover
letter and e-mail to me at tull@... I can print it out
and take it to her as well.
Keep those cards and letters flowing! ;-)
Cheers,
--Tull
p.s. looks like the problems you were having posting have been
cleared up? Let me know if you have any further problems.

Patricia (pjd)
Yes it is entirely possible to get back all movement after an infection -
with work. Physical and speech therapy can bring it back, but you have to do
the exercises daily - three times a week will only help you hold what you
have. The biggest problem is keeping the incentive to do the exercises every
day.
Take care, Bill and Charlotte
=================================

Hi all,
While checking Karyn's e-mail today (she STILL doesn't have her PC
back yet! ;-( ), I read this message from a friend of Diane's
(who lives in Nashville). She's had another attack and is in the
hospital, and her pastor (who sent Karyn the e-mail) said he thought
she could use some "cheering up", and included her phone #. Any of
you who have time might want to try and give her a call. I know
she'd appreciate it.
Hope everyone is having a good day.
Cheers,
--Tull

Carole,

Yes, thanks alot. I'm not that swift when it comes to the computer.

Jim Campbell

Hi everyone.
As I have said earlier, I have been feeling really, really rotten. I
called my GI here in Ohio at 9:00 this morning, and his office told
me to go to the ER. I have been having increased pain, a fever that
has been running around 101 & the diahhrea is just awful! I mean,
several times an hour, then nothing for awhile, then it hits me
again. This has been going on for 4 days now. Sunday, yesterday &
today I have had ALOT of bright red blood in with my stool. It was
so bad I had some dime size clots! If this is too graphic, please
forgive me. Anyways, there was so much I was beginning to get
scared. So, when I called the docs office they tell me to go to the
ER. I tell the yeah-who (my special word for stupid) doctor, again,
I have chronic pancreatitis, and they tell me my pancreas has burnt
itself out, so my enzyme levels will not be elevated. They take
blood, didn't give me any fluids, because all the nurses in there
know I'm an extremely hard stick, and none want to try to start an IV
on me anymore! They took some x-rays of my belly, then the nurse
comes in and ask if I had a ride I was being discharged. The doctor
didn't come back in, and I ask the nurse if he called my GI. She
said, no, he didn't find any reason to. I ask to see him again, ask
again, why I was having so much blood in my stool, then he decides to
do a rectal exam to test for blood. By now I was boiling mad! He
said I could go, that if there was a "trace" of blood it wouldn't
change anything. Ok, now here is what made me the maddest of all.
There was a lady that came in after I did. I know her, we use to
play softball together. She has recently be diagnosied with
pancreatitis, they started an IV on her, gave her fluids, gave her
pain/nausea meds, and was calling her doctor. Know what the
difference between her & I was? HER ENZYME LEVELS WERE ELEVATED!!
So, because mine no long rise, I don't get the proper treatment? I
came home & called my GI back, and he is going to call me in
something for the pain. Heck with the diahhrea, heck with the
nausea/vomiting, and mostly heck with the pain that has now gotten so
out of control all I do is sit & cry & lay & wither in pain. My GI
didn't have much more to say to me. Just that the blood in the stool
had nothing to do with the pancreatitis. I know this. I blood,
because it is bright red, is probably from hemmroids (sp?) and that
is irritated because of the diahhrea, because of the pancreatitis.
Oh! I just get so pissed because these doctors in the ER doesn't
believe me when I tell them what is going on with my own body!! I
hate this. I hate this illness. I hate this pain. I hate this
feeling of helpless, where no one seems to want to help me. What do
I do now? Where do I go from here? My family doctor won't do
anything until he gets a letter back for Dr. Lehman, my GI doctor has
called me in pain meds, but what am I going to do now? Just wait,
and wait? I feel like I am in a deep hole and no one wants to help
me. Thanks for listening. I'm just so depressed. And the pain is
just so out of contol lately! I hope you are all having a better
day. Lots of Hugs, Linda

Please unsubscribe my e-mails. Thank you.

Hi Carole, When I signed on a message popped up that said you wanted
to add my to your list, and I had to click OK. See if it is on yours
now, you are on mine now, and I didn't even try! Are you magic on
that side? How am I feeling? I will type a post about my newest
experience in a few. Thanks for asking. I'm so glad to see you! I
have been worried because I haven't seen anything from you in a
couple days. Are you doing OK?
Lots of Hugs, Linda

Hello every one,

More promising, if not good news.

God Bless,

Jim Stark

I am willing to print out and send packet to these shows from our
group with letter stating our condition and ask for consideration. If
anyone disagrees with this and would rather I not, please send post
or E-mail me. if anyone thinks it's a good idea, let me know. Karyn?
Paula

I came across this question on the Parkinson's bulletin board at:
http://www.parkinson.ca/board/messages/729.html
Please forward answers on to smljmj@... as she is not subscribed
here.
Regards,
Pam
---
Posted on January 27, 2001 at 21:27:37:
by Sr. Marie Louise smljmj@...
I am a floor supervisor at a nursing home and one of our residents has the
diagnosis of MSA. she is having a difficult time finding an effective pain
medicine. She has tried Vioxx, Oxy-IR and Methadone but feels all of these
aggrevate existing symptoms such as lightheadness. Do you have any
suggestions?
Thank you,
Sr.Marie Louise

What about wrutung to them collectively, some sort of group letter which we
all endorse? Paula

Date: Sun, 21 Jan 2001 08:44:37 EST
From: Juliespets@...
They say "you may experience some flushing"........PLEEEAASE. Try more like
third degree burns....OH MY GOSH. It was absolutely awful and it would last ALL
DAY LONG too!! so, needless to say, I griped so much that they switched me to a
prescription form called Niaspan because the niacin was helping lower my tri's
and so far so good. I still get some burning sensations and have broken out in
hives a few times, but it is more bearable now.
Julie
Hi Julie. I don't know what's happening in cyberspace - I just received your
posting of Jan 21 today, January 30. Maybe its a plot to make the post office
look good :-
You may find that taking one Aspirin 30 minutes before taking the Niaspan, &
taking the Niaspan at bedtime, will reduce the flushing sensation. That works
pretty well for my husband.
jang

Here is a pretty neat little thing from Paul Harvey.
Paul Harvey Writes:
We tried so hard to make things better for our kids that we made them
worse.
For my grandchildren, I'd like better.
I'd really like for them to know about hand me down clothes and
homemade ice cream and leftover meat loaf sandwiches, I really would.
I hope you learn humility by being humiliated, and that you learn