Anything new with you re your impending surgery?
How is Jim? How are the kids? Seems like forever
since I've heard from you... I'll send you an email
soon with info on changes in my life.<br
Angel... Ray
Hello to everyone..My name is Pete and I have been diagnosed with
sleep apnea and narcolepsy....I happened to stumble onto this list as
I was doing some research about Narcolepsy. I am almost at my wits
end with this...no one seems to really understand. I have recently
relocated to Alberta and I finally got to see a specialist recently
for a second opinion..I had my studies done while I lived in Ontario.
The Doc here would like to do another study but it could take many
months before he can, In the mean time I just suffer. I have been on
Ritalin for sometime and just switched to slow release Ritalin hoping
it would help, But I am finding that the effectiveness of this
medication is wearing off and I'm basically back to square one. I
have also been told and have noticed mood swings. Does anyone have
any suggestions or stories on the success of their medication? I am
also open to suggestions on achieving some quality of life. My days
consist of sinus problems,yawning,struggling to become active. Well
thats enough bable for this time I look forward to hearing from
others affected as well...Pete
Please keep us posted on your results with this. Has anyone else
tried this?
I got talking to this one person and they said, the cause of rosacea
has to do with your colon, and to drink 50ml of aloe vera juice a day
and use aloe vera cream on your rosacea, and said its garunteed to
get rid of rosacea, thats the bit that got me 'garunteed'. I have
tried this for one night so far and it seems to have already made a
difference. I have tried so many things, whats one more gonna hurt.
=)
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Hi, Angel, long time no hear from you. I'm glad
the surgery is scheduled, no matter WHAT time it is.
And what's up with Jim? Why are you missing him?
Can't you two be together right now for some reason?
It's ironic you should post today... on the way home
from work, I had decided to write and ask you what
happened with the special arrangement you were working on
for a car. Did that come together the way you hoped
it would for Jim? If so, was he surprised?? Or
hasn't it even happened yet? Boy, I sure miss seeing
your posts in the various clubs. I'll be really glad
when that surgery is over and you can get back to your
old self. How are the kids doing? And you quit
smoking! I'm proud of you!! Hang in there, the craving
will pass in time. How about Jim? Did he quit too,
maybe as a sign of support for you? Naw, he probably
didn't !<br
again soon. And I too want to welcome the newcomers to
the club.<br
I was diagnosed with N just before I started college. What I found to work
for me is to only one (1) class that had any amount of reading to do. I took
one (1) or two (2) other classes at most. I tried not to have to many
reading classes. I listened well in the non-reading classes. I took fewer
classes each semester. I went to college year round in order to keep close
to my class. Finishing college is possible, I completed my Graduate program.
To get through the rough reading times I took ritalin and pumped the
caffeine. Remember any worth having is worth working for, you will just have
to be creative in getting the job done.
Hi to all my members, I cant believe it...They
just called me today..and my surgery date is so
far...sept 8th in the afternoon...but my doctor doesnt want
that time...so if they cant get the morning time. It
will then be either sept 14 or 15.<br
breath away....Thats soon...I'm scared and an emotional
reck!!!!!!! I quit smoking cold turkey doctors orders if I
want bone from bone bank...So this isnt helping me
much either...I dont sleep anymore..pain is ok..just a
slight tingling down lefthand fingers.. I miss my
baby...my boyfriend for those who dont know me..<br
someone just write something soothing, I'm a bundle of
nerves... well I'm going on...sorry got to
go...Thanks..love angela
Ed Modestino at the University of Pennsylvanin is looking into possible
connection between ADD and narcolepsy. His address is : Research Assistant,
Dept Neurology,
University of Pennsylvania,
School of Medicine
3817 Spruce St., #603
Philadelphia, PA 191044-6101
e-mail ejmodest@...
Hi,
I recently went to a skin care convention in Victoria, Australia. I got talking to this one person and they said, the cause of rosacea has to do with your colon, and to drink 50ml of aloe vera juice a day and use aloe vera cream on your rosacea, and said its garunteed to get rid of rosacea, thats the bit that got me 'garunteed'. I have tried this for one night so far and it seems to have already made a difference. I have tried so many things, whats one more gonna hurt. =)
I basically have the same question regarding V-beam versus IPL.
I am 30 and my face has red blotches (mostly just on my cheeks) that
get worse with heat and sometimes get really itchy. I have had these
red blotches for at least 5 years.
My dermatologist has both the V-beam and IPL equipment (so he doesn't
have a lot to gain financially by steering me toward the wrong laser
treatment) and has told me that the V-beam is most appropriate for
me. I thought most rosaceans who went the path of laser therapy were
treated by IPL, but my dermatologist said V-beam is most appropriate
if you are concerned about redness only. Does this make sense?
Also, he says that even after I do 2 or 3 treatments over a few-month
period, I may have to come back every 1-2 years and get another
treatment for maintenance, because the results of V-beam laser are
not usually permanent. I don't mind getting another laser treatment
every once in a while for maintenance as long as the red blotches
don't come back over time even worse than before! Is there a chance
the redness on my face will come back even worse than it is now?
Welcome to all !!!!!!!!! This is wonderful, but
one thing please. Please tell us alittle about
yourselves.. so we can get to know you all a little
better...Thank you very very much...<br
k. and ALL
k wrote
<<1) Is there a tie with ADD & narcolepsy?
2) If so, does Ritalin help?
3) Would a non-drug avenue be preferred?
4) What's the difference between narcolepsy & sleep
apnea...can they occur at the same time?
5) Are loud & unusual snoring patterns realted to narcolepsy?
Hi k.
Is there a tie between ADD and N?
This is of great intrest to me. I am not sure if they have come up with a
true connection thus far.......but, I know many PWN (people with N) have been
dxed as children with ADD. It is my personally feelings that they were
missdiagnoised with ADD....and actually had N instead! Personal observation
ONLY!
I do know that 30% of adult people with SA (sleep apnea) were miss dxed
with ADD as children!
Ritalin is often prescribed for N......some find it works well, others do not.
There is a big difference between SA and N, which I will be happy to explain
if u would contact me personally. Can a person have both SA and
N.....yes......I do!
The loud and unusual snoring is not related to N....but rather SA.
The ONLY way to be properly dxed with SA and N.......is through a credited
sleep center and a sleep test for the SA and a MSLT for the N (which is 5 or
more naps during the day).
Please get a hold of me if u would like more information.....I have tons
of it for u!
Christie (Ibechristie@...)
Hi y'all. Please excuse me, but I have A LOT to say. I was diagnosed
a few weeks ago with narcolepsy, even though I have had the disease
for years. I am 21 years old and need help with living the rest of my
life with this. I am a smart person (I scored a 26 on the ACT and
graduated at the top of my high school class), and yet, I have been
suspended three times from college because of my grades. I can't
study because I fall face first into my books five minutes after I
start to study. I can stay awake in class usually, if I enjoy the
class, but when I have to sit there and take a test, I can't do it. I
don't want to live on disability for the rest of my life. I want to
get married, have kids. I can never get myself to do the things that
I need to do. I know that something needs to be done, like cleaning,
studying, going to the bank, etc. But I lack the motivation to do it.
I have a very supportive boyfriend, even though I don't think he
fully understands the disease, but his mother (who I am very close
to), works for my sleep specialist, so she understands what I am
going through and is very supportive, unlike my family. They think I
am faking, or that I am overreacting, and that this isn't as
debilitating as I said it is. They still think that I am just lazy
and just don't want to finish college. College is the most important
thing to me right now. But I can't do it.I have been optimistic about
living with this, confident that my doctor will find a medicine that
works well for me and that I will be able to live a normal life, but
the more I read about this, especially stories from others with the
disease, the less optimistic I am. Except for EDS, most of my
symptoms aren't all that bad. I have only had one or two cataplexy
attacks ever, and my sleep paralysis and hallucinations, now that I
understand what they are, aren't so scary. I am taking Provigil right
now, but I also have sleep apnea caused by severe sinusitis DNS,
which I am having surgery for in two months. Once my sleep apnea is
gone, I hope that the Provigil will work better. I had bad side
effects to the Provigil at first, I couldn't even look at food for a
week, and I am already several pounds underweight, but now, they are
ok with the exception of a few headaches ( which may also be caused
by my sinusitis). I am getting farther and farther away from my
family, and I need help getting them to understand and support me.
Like I said, my boyfriend and his mom are there for me, but Jason is
a marine and is stationed in Hawaii for the next year before he comes
home, so what he can do for me is limited. I am risking bankruptcy
going to visit him in a month, but I can't wait an entire year
without him. If anyone has any advice, insight, or words of
inspiration, I really need them now. Sorry that I rambled so much, it
is just that this is my only outlet. Thanks!
Crystal
I have been married to the man I met online now
for two years. I am still extremely happy! :-) I also
have several friends who met online and are still
married and very happy. I also have friends for whom it
didn't work out well. As with anything in life...there
are good people out there...and bad. <br
Skies,<br
After two summer's of working outside in my yard, weeding and
mowing, I had enough. I was experiencing a burning / stinging
sensation on my forehead, cheeks, and nose when outside in the sun &
heat. This was on top of the "red face" that had gradually gotten
worse over the last five years. For several days after doing yard
work, I had what appeared to be bumps / hives with a soft white
crust or scab. I know that I do suffer from some Adult Acne, these
appeared to be different. Attemping to clear up the bumps / hives
and what appeared to be a red rough texered rash (?), I cleaned my
forehead with noxzema face pads. Boy did it burn. My Doctor told me
to stop using the face pads, I was making it worse. After doing this
for two years, my face became very rough, red, dried, and at times
oily.
I decided I had fought this problem long enough and saw my Family
Doctor. He explained that I had Acne Rosacea. Which was the first
time I had ever heard of such a thing. He precribed me, Tazorac. I
have been on Tazorac for almost a year now. He also has me using
Cetaphil cleansing soap during my shower and / or bath and face
lotion after I get out of the shower. His treatment works good for
clearing up the black heads and the dry skin, but I felt more could
be done for the redness in the face, and the (now less frequent)
flare ups with bumps / hives. The lessening of the frequency of the
flare ups, I believe, are to knowing what the triggers (sun / heat)
are for me. The flare ups occured mostly when I was in the heat /
humidity. I saw my Docotor again and he states that I (maybee)
should see a Allergist. He was strongly against me seeing a
Dermatologist. I wonder why he feels I shouldn't see a
dermatologist? I wonder, since I suffer from chronic Bronchitis and
Asthma, if I should see both. Or have I been misdiagnosed with
Rosacea?
I found that a year ago the rosecea just starrted spreading down my jaw to my neck too. It was after stopping antibiotics and the redness just expanded...It went away again after the doctor put me back on minocyclin and noritate.
Although I would check into another possible cause as being a sensitivity to a different laundry detergent / bounce sheets(these used to do it to me!) when used in your sweaters/pillowcases etc. touching your face.
-KAt
Message: 1
Date: Sun, 13 Oct 2002 21:29:32 -0700 (PDT)
From: "Jordan B."
Subject: Re: Taking Purpleemu?
I have read in more than one place that having the
telephone press against your skin while talking on the
telephone will cause breakouts around your jaw area.
Here's some more info on it:
http://www.askjanice.com/letters/whyacne.asp
Words of Wisdom
"When one door closes another door opens; but we
so often look so long and so regretfully upon the closed door,
that we do not see the ones which open for us."
-- Alexander Graham Bell
Anyone got any comments on online relationships?
Been in one? Any caveats? Are they good or bad? You
all probably know that an online relationship is how
I became involved in sci and sb clubs in the first
place, so obviously I'm not unfamiliar with them. Even
though mine went awry, I still think they can be good,
provided they are approached cautiously and with honesty.
I'd like to hear others' comments.<br
--- In narcolepsy@egroups.com, "Peter M. Ackermann"
Well, I have been checking around, but haven't found specific
answers to my questions yet. I just figured someone here might
have a bookmarked URL about a question or two.
snow you.
Thanks for the advice. I'll certainly keep that in mind.
k.
have
a
I have been combating a Rosacea condition for about 10 years and
have recently begun a V-Beam program. I was wondering if anyone had
a strong opinion regarding the selection of V-Beam or Photoderm (of
Dr. Bitter fame)?
Thanks,
Brad
A lot of the info you are asking for is on the net at a variety of sites.
Check around
you'll find the answers you need.
Also when you take her to a Sleeo Disorders Doctor, Make damn sure the doc
is a BOARD CERTIFIED SLEEP DISORDER SPECLIST. There are a lot who say they
are sleep docs and are not board certified and don't let them snow you.
Purpleemu is like many other rosacea control creams. Although there
are so many different types of creams and gels it seems this one may
be worth trying due to the fact that the rosacea research who made
this purpleemu refers to this cream helping people who blush alot and
from to much blushing redness occuring but noone knows for sure what
causes rosacea cause its different for each individual person but all
related with the same skin problem. Lots of places that I read about
always put the two together blushing, getting embarresed easily and
redness acne kwown as rosacea. But anyways I have a red nose and
blush easily so Im going to try the Purpleemu blemish and redness
control cream. You can read more about it at http://www.purpleemu.com
i was able to control them with metronidazole gel and minocycline.
Lately ive bee having breakouts on my chin- jaw area which is really
wierd. my redness is moderate but the acne is cystic like the ones i
previously get on my nose and cheek area. Ive been having difficulty
controlling the ones on the chin-jaw area. I hope someone can
enlighten me on that matter, does anyone experienced flare-ups on the
chin-jaw area? thanks
Hello,
I found this group hoping for some help, support, information,
etc.
My son's counselor contacted us before the end of school. She
said that going back through his records, she noticed that he
went from a GPA of 3.0 in 8th grade to...well I don't want to
say...now just finishing the 9th grade. She said she had noticed
a diagnosis of ADD for him earlier. (He hasn't been taking
Ritalin for a several years.) She also said that she suspected
narcolepsy, and that she had read that it had a tie with ADD.
We have noticed in the past few years that he falls asleep
easily...in the car (riding)...watching television, etc. NOT while
playing games or moving. He also snores loudly & has the
most unusual snoring patterns as well.
I know I am rambling here, so I'll try to wrap this up. I do have a
few specific questions. If anyone has information or links to the
web on any of these, it would be greatly appreciated. We will be
calling my son's doctor & pursuing from that angle as well. In
the meantime...any answers or info would be greatly
appreciated.
1) Is there a tie with ADD & narcolepsy?
2) If so, does Ritalin help?
3) Would a non-drug avenue be preferred?
4) What's the difference between narcolepsy & sleep
apnea...can they occur at the same time?
5) Are loud & unusual snoring patterns realted to narcolepsy?
I'll stop for now. Thanks in advance for any & all responses.
webkat
Thanks for the update, Angel. I'll be waiting to hear any further news. Love
ya, my friend.<br
hello, what are the contents of purpleemu? where can i possibly get them?
Im a diagnosed case of rosacea 10 years ago, started when I was 18. i was able to control them with metronidazole gel and minocycline. Lately ive bee having breakouts on my chin- jaw area which is really wierd. my redness is moderate but the acne is cystic like the ones i previously get on my nose and cheek area. Ive been having difficulty controlling the ones on the chin-jaw area. I hope someone can enlighten me on that matter, does anyone experienced flare-ups on the chin-jaw area? thanks
Hello all,<br
havent had time to chat...but got some good news and
some bad. first the good...c 5-6 had gone down
some...but the pop I felt...was c 6-7..I knew it myself...so
now that makes two disks..herniated..Im going aug
18th to see both dr's neuro and ortho.. and will find
out what to do...cant keep going to chiro...they all
had said that they do heal but will always be weak.
cant live my life wondering if and when the next time
its going to happen! so I may opt for the
surgery...lets see if they have to do both!. I might as well..
my dad and jim just get it done so I can start
living my life again...I feel the same way!!! so after
wed. I will let you all know the out come ok?... sorry
but I have to go now... next week we can talk ok?
love to all my dear friends here and in other
clubs...<br
I have ordered alot of products and used them but have never used
purpleemu. has any used this and have had good sucess with it?
Purpleemu is a topical blemish and redness control cream that is
guaranteed to work for rosacea sufferers and to clear up the redness
and kills the inflammatory redness by sucking the bacteria out of
your pores. I am thinking about giving it a try but wanted to see if
anyone had luck with it. Well thx.
Angela, my dear, I have been waiting for word
about your surgery. What did you learn yesterday? Keep
us informed.<br
members; please post here so we can get to know you. I am
AB, became involved with a woman who received a sci
due to an mva and got heavily involved in several of
these clubs. We were seriously involved; but things
didn't quite go as we had hoped. I'm now involved with a
woman with SB and I continue to learn more each day
about life in the disabled world. I am NOT a devotee;
it was fate that brought these two wonderful people
into my life and I adore both of them. Now let's hear
from all of you.<br
I have found that when I am in a comfortable setting I am not able to stay on
task as well as I should.
I'm so glad that we have more new members...Can
you all please tell me alittle about
yourselves?<br
thru some stuff too now that keeps me away from the
comp...I am going for surgery for herniated disk C5-6
...c6-7 might be involved...I have tingling down my
fingers now..and have to sleep upright with my collar
on..I will find out more after tomorrow... but tell me
about yourself, where your from, what is your condition
so on and so forth!! Thank You very much.<br
Hey, Angela, you didn't even have to see the game
that we all went to to know that the Rockies suck... I
think they've lost 22 of their last 25 games and that
should pretty well confirm the
statement.......LOL<br
is scheduled/completed... I'm keeping you in my
prayers.<br
iwould just like to say thankyou to
one and all of you.
you,ve giving me hope
i will get down to telling
you of my experience,s
do any of you find if your mind is occupide
or you have new challange you don,t suffer
so bad
Jenny
I have found Neutrogena sensitive skin products work the best
Well, there is someone out there!
I'm Pete, 49, have been "N" for 22 "wonderful years of misery". Mine
started full on in '78 after I had the worst case of the flu i have ever
had. Thanks to the US Gov't. & their need to test US instead of rats. Sorry,
I have this thing about mutation of influenza and evading flu shots for last
years flu. What set me up for the big "N" was even more fun. 6 months of
almost bathing in JP-4 jet fuel while draining off the condensation. And of
course, the gov't denys having any responsibility. It's between me and the
fuel.
I live(if you want to call it that)in gov't housing in wonderful Georgetown
South Carolina where the handicapped are the lowest form of live. Just 40
miles south of America's favorite beaches, Myrtle Bitches. Where over 500
rapes took place in three months, last season. Come to the beach, but don't
bring your gun.
Now, let's face facts. You got to have a sense of humor to live with
narcolepsy. What other disorder can drop you on the floor at the most
inopportune time and allow you to get up and leave before the paramedic
arrive. Or fall asleep during class so you miss the most important part of
the lecture. and promotes teeth decay. Ever go face down in your salad at an
important dinner party? Or put the milk in the cabinet and the cereal in the
frig. and my favorite, getting several more hours of sleep than normal, get
up only to have several sleep attacks while driving. My answer. slapping my
face hard enough to stay awake. Now, what is the guy behind you thinking?
No, Dorla, I still don't have my chat working.
Where is that download that you
installed?<br
too,
but there is a reason why you're not. I'm sure he
would like to be with you, but maybe that just isn't
possible. I love you, my friend, and you are in my prayers.
:)
Hi
I am new to this Support Group and any advice anyone can give would
be welcomed with open arms. I have read quite a few other e-mails and
feel relieved that I am not the only one
I am 34 years of age and had Rosacea for 4 years. I stopped taking
antibotics and topical cream in January as I was fed up pumping my
body with pills plus I wanted a Baby. As you can imagine my skin
flared up and is at its worse now.
I am now pregnant and the baby isn't due until April. If anyone can
recommend any products that will not harm the baby, I will be
extremely grateful. At present I am using Aloe Vera Products as well
as Rosacea Care products. I am based in the UK and things aren't as
readily available as in the US - I would love someone to prove me
wrong.
My skin is extremely dry and have to use an exfloator every day,
which I know makes your skin redder, but otherwise I look like a
creature shreading its skin. I'm not sure if this is something to do
with my Hormones or the Products I am using. Plus I have the obvious
normal signs - extreme redness, pimples, and bumps.
If anyone has any Makeup tips on which foundations are the best for
Rosacea - again I would be so so grafeful
I look forward to receiving any advice
Thank you
Jenny
I just had trouble with having two virus
protections on at one time..I thought I got my old one
deleted when I installed the new one but apparently not.
I kept having fatal execptions when I booted up and
was freezing up a lot. I finally called a tec and he
helped me delete it all and start all over. Then I
couldn't get into chat and all I got was a grey screen so
I had to go back and re-download that java machine
for IE. Now my chat works fine and glad to say my
puter is working fine too..Hope you got yours going
too. Dorla
Paul,
I think that all of us who have narcolepsy feel quite alone at times,
and that others don't really understand our life experiences. I'm 61
years old and was not diagnosed until I was 40, though I had suffered
the consequences of narcolepsy since I was about 18. Even with the
advanced communications of today's world, most Doctors in the USA
know very little about Narcolepsy. One is lucky to find a Dr. who
has
even heard of it.
Recently the U.S. Senate passed a bill banning the ownership or use
of GHB (gammahydroxybutyrate) which is about the only treatment that
helps those of us who experience cataplexy. There is a clause
allowing medicinal research-but there is no supply available for
anyone other than those in a sanctioned research program regardless
of former successful use of the substance. I know that GHB has been
used in France for many years, as I read about it some twenty years
ago when I was first diagnosed. When I got to the point where
cataplexy was seriously affecting my job performance, I did manage to
get into a GHB research program. The affect of the GHB was
miraculous, allowing me to complete the few years I needed in order
to
retire. At the end of 1999, it became unavailable to me.
Surprisingly, my neurologist prescribed Prozac, which works
relatively
well as long as I take about 20 mg. of Desoxyn and a new drug called
Provigil that was recently approved by the Federal Drug
Administration.
I don't know if GHB is available to you in the UK, but you should
certainly investigate. It made an enormous difference in my life.
You at least have a wife who attempts to give you support. I have
never been married and live by myself. Luckily I have two sisters
who are supportive, though they both live a great distance from me,
and a few close friends. Music-I am a singer and play piano, which I
luckily learned in my youth-is the best solace I have. It and
gardening are the things in my life that make it worth living.
I would be most happy to correspond with you if you wish. My email
address is <galen-barry@...
what you are experiencing, so you are not alone, believe me! Attempt
to look at the brighter side if you can--count the blessings you
have-- and know that others have been where you are now. I hope that
this response offers some support in dealing with your feeling of
being so alone.
I am empathetic, I too have been there!
Welcome back Dr. Alarcon. I am so glad you are back. Thanks for your
insight into all this and your caring for this group.
Brady Barrows
rosaceans group founder
HELLO MY NAME PAUL ,I,M 30 YEARS OLD AND HAVE HAD NARCOLEPSY FOR
ABOUT 11 YEARS I WAS DIONOSED 5 YEARS AGO. THE CATERPLEXY STARTED
3YEARS AGO AND HAS GOT WORSE EVER SINCE.MY WIFE MEL HAS BEEN GREAT
BUT I DON,T THINK SHE REALLY UNDERSTANDS HOW ALONE I FEEL.IN ENGLAND
NARCOLEPSY IS NOT CLASSED AS A DISABILTY.SO TO CARRY ON HAVING A
REASONABLE STANDED OF LIVING I HAVE TO WORK THE PROBLEM BEING
I DRIVE EARTH MOVING MACHINES AND FEEL MY LIFE IS ONE BIG LIE TRYING
TO HIDE THIS SOUL DISTROYING DISEASE IT WOULD BE NICE TALK TO SOMEONE
TO KNOW THAT I,M NOT ALONE
Kerry,
Just begun surfing the Narco links, so I hope this isn't advice out of
date. Spent a year post doc'ing at Adelaide Uni back in '74 - often
regret leavning, not just the place, but the people. Anyway, to the
point. My first onset was back in '64 - despite good insurance and
even MD's in the family, no diagnossis until I returned (to Montreal)
in '75. At that time, I recognized the symptoms from an article in the
local Sunday Supplement, turned myself over to Neurology at the Montral
General Hospital and got some support. From that time to this time,
I've had excellent medical support, but without great results. It does
appear at this time that research is finally honing in on causes and
'cures' will not be far away. Great news for me, I have a child I'm
increasingly worried about. I've coped, but I can't say the cost
hasn't been high, and I wouldn't want her to face this with the kind of
support available to me. With real drug regimens, the chances for
control are real.
Point is however that the understanding of the condition and options
for treatment are largely missing in North American medical practice -
is it better in Oz?. This is not intended as a blanket condemnation of
the Medical Establishment - I 'fuction' these days in the area of
environmental and occupational health, and while I'm constantly amazed
at the lack of knowledge of clinicians even in these areas, I also work
with them on a daily basis and understand the limitations that they
face. Given 15 minutes with a patient to solve all their problems,
what can you do?
So, your proposal is both critically timely, but with the caveat that
we're on the cusp of and not into effective treatment, and faced as
well with the the reality that the average clinician is not aware of,
and totally unconcerned with your topic. You are the communications
dude, so I won't tell you how to deal with that (because I don't know)
but I would suggest that you contact people actively involved in
clinical practice in that area, and have 'deep' credentials. This is
Boston, where the Doctors feed and water. I've had two principal
contacts here - neither solved all my problems, but there weren't
solutions then (or quite yet) and I must say they've tried and continue
to try and they certainly are as well 'connected' as is possible.
Stanford Auerbach, Boston Medical Center, and John Stakes, Montreal
General Hospital.
If it's useful, tell them I recommended them to you. If you get up
this way give me a shout and we'll sit down to some grouse tucker (I
can still make a pie floater - but then who can't) and have a blue. If
the aforestated terminology appears archaic, well it probably is, '75
wasn't yesterday, and up here we generally balme that on Bill Gates
and sue himm for it.
G'day
Brian
"kerry haywood" <kez197-@...
Dear Galen,
There are three people listed on the website.
Good luck.
Dwain.
Dr. Calvin Beaugez
1360 S. Wadsworth
Lakewood, CO 80232
USA
Phone: 303-986-8525
Fax: 303-986-8525
Dr. Kathryn Brittain
821 N. 1st. Street
Montrose, CO 81401
USA
Phone: 970-240-8578
Dr. Tom Groover
2725 Iris Avenue
Boulder, CO 80304
USA
Phone: 303-442-7772
Fax: 303-442-7772 grooverdc@...
Hi! I live in the New York City area. Can anyone recommend a dermatologist in this area that might know what they are talking about. I have been to 3 different derms and 1 plastic surgeon. Everyone tells me something different. Please help
Rose
I just joined this list a few weeks ago. It's been informative. I have been on several topical and oral medications over the last few years that I've been treated for rosacea. Nothing has been very effective. I currently have prescritions for Noritate cream, Minocycline, and Plexion cleanser. This summer, I went by a day spa and was browsing through their menu of services. I noticed they had something called a "rosacea facial." I gave it a shot. It helped more than anything I have ever tried. The products for the facial are by Pevonia (www.pevonia.com), which carries an entire line of skin care products for those with rosacea. In the last three months, I have put the prescriptions away and used these products exclusively. It's not perfect, and I've had one bout of redness and acne like places, but for the most part, these products have done more for my skin than anything else.
This isn't a commercial, at all. I was wondering if anyone else had tried them. I will be going back to the dermatologist in the next month or so, and I'm interested to see what she says.
Jennifer
To unsubscribe from this group, send an email to:
Sorry for not welcoming you the right way..as you
can see I'm caught up in some tough things myself...I
dont know who you all are, so if you dont mind can you
tell me more about yourself? Thank you....I wanted to
give you the proper welcoming....So if you have any
questions please feel free to post or write me. OK?
<br
Dwight,
Everytime I attempt to log-in to the NUCCA.Org, I get a computer error
message telling me that an illegal transaction has taken place.
Needless to say, I have not been able to pursue the location of a NUCCA
Chiropractor in the Denver, Co. area. Can you help? I would like to
try working with a Chiropractor and see if it's beneficial for me.
Thanks!
Hi Angela,<br
need surgery, but don't worry, I have know several
friends over the years who have had this surgery. The
worst they have reported to me is a slight reduction in
mobility of the neck. I guess this is a small price to pay
to know that your neck will be secure and not have
the spectre of worse injuries occuring.<br
forget that we all love you, and that we will always be
here to support you...<br
I just joined this list a few weeks ago. It's been informative. I have been on several topical and oral medications over the last few years that I've been treated for rosacea. Nothing has been very effective. I currently have prescritions for Noritate cream, Minocycline, and Plexion cleanser. This summer, I went by a day spa and was browsing through their menu of services. I noticed they had something called a "rosacea facial." I gave it a shot. It helped more than anything I have ever tried. The products for the facial are by Pevonia (www.pevonia.com), which carries an entire line of skin care products for those with rosacea. In the last three months, I have put the prescriptions away and used these products exclusively. It's not perfect, and I've had one bout of redness and acne like places, but for the most part, these products have done more for my skin than anything else.
This isn't a commercial, at all. I was wondering if anyone else had tried them. I will be going back to the dermatologist in the next month or so, and I'm interested to see what she says.
Jennifer
Hello Lee and other persons with narcolepsy,
If you live in the US, I urge you and other persons with narcolepsy to join our national information and support organization, Narcolepsy Network. Dues are $25 per years if you have the dough and if you don't, ways are available for you to be a member with all the privileges. With membership you'll receive a quarterly newsletter "The Network" and a free copy of "Narcolepsy: A Guide to Understanding" which is a very informative, well written understandable booklet. NN has an annual national meeting which is attended by the foremost narcolepsy researchers in the world as well as narcoleptics. St. Louis, Missouri is the site of the meeting to be held in the fall of 2000. See NN website at this url: http://www.narcolepsynetwork.org Clicking on this link should take you there. I'm an ordinary member of NN and have been since 1993.
Every person with narcolepsy needs to arm himself with information. You need to know you have choices in medications; you need to know what to expect. When I my narcolepsy was diagnosed (back in the dark ages--1969), I had only bare bones information from my doc. I learned to live with narcolepsy without support and information. These days newly diagnosed narcoleptics are fortunate to have information readily available.
Lee, the weakness you experience when you laugh or become frightened is indeed cataplexy. Be aware that cataplectic attacks vary widely in severity and frequency for each narcoleptic. And it varies from person to person. As far as I'm concerned, cataplexy is by far the worst symptom of narcolepsy. It is certainly the most disconcerting feeling I know. Medication is available which will control cataplexy. However that medication is also sedating and counteracts the medication you take for excessive daily sleeping (EDS) My best advice is not to take medication for cataplexy until you have gained GOOD control of the EDS. You should be sufficiently medicated for EDS so that you don't have to nap unless you choose to nap. When you have enough of the proper kind of EDS medication, then consider taking medication to control cataplexy. You should avoid anything of a sedative nature including alcohol and sleeping pills.
You ask if narcolepsy will get progressively worse. While the disorder is "blossoming," it will get worse. However, in time, after all symptoms have surfaced, you can rest assured that it will reach a certain point and remain the same--more or less--for the rest of your life. Many report narcolepsy being milder later in life. I wish I could agree with that statement. In addition to taking medications, we each LEARN control techniques so the symptoms may not seem to be as bad as they once were. For example, I learned several ways of controlling cataplexy and haven't fallen to the ground in years. You have already experienced EDS which in moderate to severe cases of narcolepsy is unrelenting. You have already experienced some cataplexy. These are the other symptoms to be aware of: sleep paralysis, hypnagogic hallucinations, vivid dreams, automatic behavior which I call a "low alertness phase," an amnesia which occurs during AB and an associated learning disability
which is yet unnamed.
It isn't easy being a narcoleptic, but with proper, effective medication, a positive outlook, and emotional support from family and friends, you can have quality in your life. Narcolepsy does not affect the life span.
Keep in touch with us Mike and let us hear how you are doing. For goodness sakes, don't hesitate to ask the questions which are on your mind!
Nancy Valencia
.
Well the doctors say I need to have my spine
fused..cervical wise!! I'm very scared, but I have to get this
done..I cant even do the simplest things...If anyone ever
had this type of surgery done.. please post a messege
or e-mail me..I'm going to need all the support I
can get...Thank you all for listening...<br
you all...<br
Hi, Angel,<br
that surgery done. Would you go to Craig for it if you
decide to do it?<br
later. Today is MOVING day! Ughhhh !! By tonight I'll be
in my new place... not everything I own will be
there, but I will be. I'll post as soon as I get my
computer hooked up in the new place.<br
thanks for the message, Angel !<br
In a message dated 03/06/00 1:09:36 AM Eastern Standard Time,
hotn2000@... writes:
<< Also is Narcolepsy a disease that can or will get progressevly worse? I
am 25 years old,the father of two wonderful little girls, and i want to
know what to expect in the future to help educate my family as well as
myself. I dont care for my doctorand cant comfortably talk to him, but
insurance wont pay for anyone else.
Howdy.... I have a comment on the progression of N and your age, and no doubt
a few more comments....lol
At about the age of 25 I started to notice my EDS, though others around me
often commented about my sleeping more the usual, I didn't think much of it.
Not until I found myself driving in my sleep did it really start to bother
me. At the age of 30, I thought that maybe I was going crazy....not being
able to control my own actions (C) and falling asleep in the worst places! I
went through a battery of tests....until I couldn't take it any more and
called my doc and gave her two choices....lock me up or shoot me! She chose
neither, but sent me to a so called "sleep specialist" ( that is a whole
nother story).
I was able to continue working and being extra cautious of my driving until
the age of 33....at which time I just could not do it any more. My story is a
little more complex then just that though....I also have Sleep Apnea and a
terrible time with any medications.
It is so tough, each of us is so different...I get so upset with these
doctors that put us all into a tidy little box labeled N....it just doesn't
work that way!
To answer your question about progression.....they claim that it does not
progress in their journals and books......but talk to just about any Ner and
u will hear different. The progression is different for each of us, some very
little if indeed any at all. For others like myself....a slow gradual
progression.
The best advice that I have for you (this is a must) is to find a doctor that
will work with u and does understand N/C, not claims to understand but truly
does. You can get great lists of docs who come recommended from the
list.....just ask in a post, be sure to tell where u live though. Even if u
have to pay for the doc out of pocket and get the meds with your
insurance.....u will be FAR BETTER OFF!
Above all......stick with this N list....u will learn, make friends, and
become "okay" with what u have been delt with......hang in there..! U R NOT
ALONE ANYMORE!
Christie
HI Kat!
I am in New York. I pay $75.00 for Noritate. I have no health insurance so I foot the whole bill. I am completely disgusted with the whole thing. I can't find a treatment that works for me. I have been to 3 different derms and 1 plastic surgeon. They each suggested a different treatment. I am starting to think the health care system here sucks. Thanks for listening.
Rose
www.detnow.com/news/0207221204.html
The next link is to read about the reporter, Mark Wilson.
www.detnow.com/about7/anchors_reporters/wilson/html
Within the story, Mr. Wilson provided a comparison chart, using several drugs, and several pharmacies. The link to that chart follows.
www.detnow.com/news/0207221204-table.html
At the end of the report, one of the anchors asked Mr. Wilson whether or not there were any pharmacies that did not adhere to this practice, and he said that Costco consistently charged little over their cost for the generic drugs. They gave the link to Costco, which I will include here, so that you can go and check prices for yourself. www.costco.com I went to the Costco site, where you can look up any drug, and get it's online price. It says that the in-store prices are consistent with the online prices. I was appalled. Just to give you one example from my own experience, I had to use the drug, Compazine, which helps prevent nausea in chemo patients. I used the generic equivalent, which cost $54.99 for
60 pills at CVS. I checked the price at Costco, and I could have bought
100 pills for $19.89. For 145 of my pain pills, I paid $72.57. I could have got 150 at Costco for $28.08.
I would like to mention, that although Costco is a "membership" type store, you do NOT have to be a member to buy prescriptions there, as it is a federally regulated substance. You just tell them at the door that you wish to use the pharmacy, and they will let you in. I do believe members get an additional 5% discount.
When I think of all the seniors, people who don't have prescription coverage, and people who don't have insurance at all, I get so very angry that these people are doing without necessities, or without the medications themselves, because they are so cost prohibitive. "
Hi all,
This was sent to me on another list and has been verified as what is going on with pharmicies etc. Though I am in Canada, so I don't think I am being "gouged" to the same extent on the prescriptions I get, maybe those of you in the states want to check this out...
For example I just went to a new derm & in addtion to the Noritate and tetracycline wHich I already was taking, she put me on Sulphcet-R. Now I always research any new meds & found several US pharmacies were selling this for $54 & $60/bottle. When I picked it up at Walmart here, it was $17.40 CDN dollars - and that included the $4.97 dispensing fee...(so that would be around $12 USD)
Another one : Noritate 1%- 30g - mine was $47.55 CDN (28.79 USD aprox) One online drug place was $48 another $60. What do the rest of you pay?
-Kat in Canada
anyhow, heres the article:
"On Monday night (July 22), Steve Wilson, an investigative reporter for channel 7 News in Detroit, did a story on generic drug price gouging by pharmacies.
He found in his investigation, that some of these generic drugs were marked up as much as 3,000% or more. Yes, that's not a typo..... three thousand percent! Mr. Wilson did a thorough research, and checked out all the major drugstore chains, discount chains, independent pharmacies, and even checked on some Canadian pharmacies. His findings, and report, made me see red to say the least.
So often, we blame the drug companies for the high cost of drugs, and usually rightfully so. But in this case, the fault clearly lies with the pharmacies themselves.
For example, if you had to buy a prescription drug, and bought the name brand, you might pay $100 for 100 pills. The pharmacist might tell you that if you get the generic equivalent, they would only cost $80, making you think you are "saving" $20. What the pharmacist is not telling you is that those 100 generic pills may have only cost him $10!
The following link is to the story itself, so that you know that this is not a hoax of any kind.
www.detnow.com/news/0207221204.html
The next link is to read about the reporter, Mark Wilson.
www.detnow.com/about7/anchors_reporters/wilson/html
Within the story, Mr. Wilson provided a comparison chart, using several drugs, and several pharmacies. The link to that chart follows.
www.detnow.com/news/0207221204-table.html
At the end of the report, one of the anchors asked Mr. Wilson whether or not there were any pharmacies that did not adhere to this practice, and he said that Costco consistently charged little over their cost for the generic drugs. They gave the link to Costco, which I will include here, so that you can go and check prices for yourself. www.costco.com I went to the Costco site, where you can look up any drug, and get it's online price. It says that the in-store prices are consistent with the online prices. I was appalled. Just to give you one example from my own experience, I had to use the drug, Compazine, which helps prevent nausea in chemo patients. I used the generic equivalent, which cost $54.99 for
60 pills at CVS. I checked the price at Costco, and I could have bought
100 pills for $19.89. For 145 of my pain pills, I paid $72.57. I could have got 150 at Costco for $28.08.
I would like to mention, that although Costco is a "membership" type store, you do NOT have to be a member to buy prescriptions there, as it is a federally regulated substance. You just tell them at the door that you wish to use the pharmacy, and they will let you in. I do believe members get an additional 5% discount.
When I think of all the seniors, people who don't have prescription coverage, and people who don't have insurance at all, I get so very angry that these people are doing without necessities, or without the medications themselves, because they are so cost prohibitive. "
Dear Teresa,
For some reason there does not seem to be anyone near you. The nearest
certified NUCCA doctor is the following. Perhaps you could phone him for
further information. I know it is a long journey to Munroe. I have been
there many times. It is just north of Toledo.
I would really encourage you to see Dr Denton, as he is an incredibly
dedicated and skilled doctor. If he is able to help you -
it would be worth almost anything.
Regards,
Dwain Ingram
Dr. Keith Denton
217 W. Second St.
Monroe, MI 48161
USA
Phone: 734-241-6923
Fax: 734-241-5755
dwain.........i live in the richmond virginia area.........chester to be
exact. thanks for your feedback.
theresa
Good day to all! Sorry I havent been
posting..<br
time!<br
on perks for the pain.. I'm trying to tough it out
though..getting a little frustrated with the whole thing! All I
did was look down into a bag and snap!!! Thats all
she wrote! I'm seriously thinking about getting the
surgery done. <br
whatever little thing I do is going to make it go on me
again.<br
to what to do...But anyway I just wanted you all to
know that I wasnt trying not to talk to anyone..to
painful to even sit up for a while..<br
Just wasnt in the mood..<br
members..correction ..dear friends...<br
later today ok?<br
angela
Dear Teresa,
In what town do you live? I would be happy to recommend a certified NUCCA
doctor to you who lives near you - or you may want to refer to nucca.org on
the internet.
I have successfully treated many hundreds of people after a fusion. The
NUCCA method is extremely gentle but very effective. It is not the classic
manipulative approach using long lever technique.
Hoping to hear from you.
Dwain Ingram, D.C.
Thank you for your reply, Nancy. Getting your neck cracked is not an adjustment it is a manipulation and does not necessarily mean that the structures of your neck have been returned to their normal position. The only way to prove a correction is to have it measured before and after the treatment, using x-ray measurements. The only people who do this are the NUCCA chiropractors and the AUCCO chiropractors. I would strongly recommend that you do this and find out for yourself. Have you accessed the NUCCA web page - nucca.org?
If you are stuck in the medical paradigm, I feel sorry for you. The medical profession have certain tools which are very effective but it is like a fellow who has only a shovel and an axe. Some problems are better solved with a hammer or scissors.
I was diagnosed with narcolepsy at the Toronto neuro/psychiatric hospital and the University of B.C. sleep lab, so there is no doubt. Yes, I do have sleep apnea, but so do about one third of overweight males. They do not have narcolepsy.
I have not taken one pill of any sort for narcolepsy for about 30 years. Prior to that it was ampetamines to feel normal.
Tractionization of the brain stem does cause electro-chemical effects. Tractionization of any nerve tissue or any other tissue alters its state. The manifestations which we usually measure are mechanical, the high hip, the "short" leg and the deviations of the body into either the transverse or frontal plane.
Unfortunately, chiropractic is not part of the medical establishment. The american medical association and the "who's-who" of the medical establishment were convicted of a conspiracy to discredit and destroy chiropractic.(Wilkes vs AMA). We are under constant attack by the medical drug establishment who are attempting to preserve their monopoly on health care. Chirorpactic has been examined by at least 18 studies, one of them being a Royal Commission. Have a look at the recent Manga report put out by the University of Ottawa. If you are interested, I will look up the site on the internet for you.
The Manga study showed that the OHIP, medicare in Ontario, could save between six and eight hundred million dollars by using chiropractors to treat low back pain. Was this implemented - no. It would make a lot of the medical fraternity angry and the politicians are well aware of where their votes are coming from. I would consider this a misuse of public funds but what else is new.
I could go on and on for pages but I'm sure you get the idea.
For this reason, research has been very limited. We do not have access to public funds. When was the last time you heard of a medical doctor putting up money for a study. It is all done by public institutions. The day is fast approaching that research will prove the value of chiropractic - one study has been submitted for publication on the results on chronic fatigue syndrome. It is an excellent study done by a hospital, two neurologists and a chiropractor, all of whom donated their time and equipment. I will supply you with a source as soon as it is published.
Best wishes to you. If you wish the name of a chiropractor who is certified in the NUCCA method please look on the website.
Dwain.
P.S. My name is Charles Dwain Ingram, normally called Dwain.
In a message dated 9/29/02 6:36:33 PM Eastern Daylight Time, visplan327@... writes:
Could there be a link between this and Rosacea?
Anyone else have Raynaud's as well?
There are at least several of us on the list with both. I have had symptoms since of Raynaud's since my late teens and rosacea since my late 20's. I'm now 42 and feel like both things are progressively getting worse. I do as much prevention as I can with the Raynaud's -- I sleep on flannel sheets and wear socks to bed year round, I have very well insulated boots, I have great leather mittens that have fleece gloves sewn inside for double insulation, and I don't ski or do winter outdoor sports anymore. I live in New Hampshire so I can't avoid cold altogether but I cherish the months that are warm and hope to retire in the Carolinas or Georgia.
Many people think there is a connection between the diseases. My mom has both things as well, so I believe there can be a hereditary component. My doctor and dermatologist both say that these are diseases that can only be managed, not cured. :-(
Heidi
I have had trouble staying awake during the day for years, but it has gotten alot worse in the last year.this is what made me finaly go to the doctor. After my sleep studies it was determined the i did have narcolepsy. I do have terrible memory problems,but im not sure about the cataplexy. I do get EXTREEMLY weak when i laugh hard or get frightened. could this be cataplexy. Also is Narcolepsy a disease that can or will get progressevly worse? I am 25 years old,the father of two wonderful little girls, and i want to know what to expect in the future to help educate my family as well as myself. I dont care for my doctorand cant comfortably talk to him, but insurance wont pay for anyone else. .................Comfortably Numb
Anyone heard from Angela lately?<br
you online in days and days. I'm a bit concerned.<br
I have had Raynaud's since I was a kid. From what I understand, it is another
vascular thing which causes my toes most often, sometimes patches of the
bottom of my feet to turn white, and on the rare miserably cold and damp
occasions, my fingers. Could there be a link between this and Rosacea?
Anyone else have Raynaud's as well?
Hello Dwain (Charles) and other listers,
Thank you for drawing my attention to the article on Narcolepsy which appeared in January's issue of "Scientific American." Siegel is one of our recognized narcolepsy researchers. However, his first sentence bothered me a bit. He wrote, "Although people with the disorder do not fall face-first into their soup as in the movies...." I don't know what movie he is referring to, but his statement is clearly incorrect. As the result of cataplexy, the tip of my nose has worn gravy and other victuals several times. The rest of the article contains standard stuff I've read in other places. I thought his illustrations made the article more understandable.
Nancy Valencia
Hope this is helpful.
Dwain Ingram, D.C.
i would love to get aligned but i had a c4 fusion in 1992 and am not sure
about it. theresa
I only have rosacea pretty much on my nose only, not on my cheeks at all. I read on the web that there is an operation in which they cut specific nerves in your armpit, that cut off the blood flow to your nose or any other part of your face. This would be perfect for me, the only downfall I have heard is the part where they cut off the blood flow too, wont be able to produce sweat anymore. I dont really want to stay on minomycin/tetracycline for the rest of my life, and I have already tried, surface laser, IPL and changed my diet dramaticly to be totally healthy, all havent had any great effect.
I've been here..just not posted. Wish I was on
vacation but then again I don't like to leave home so much
anymore. I will be traveling out to Dayton the last of
this month to baby sit my new granddaughter for a
couple of months. Looking forward to that and then again
will miss my own chair and bed. But you can't have
your cake and eat it too...Always thought when we got
older and retired we'd just travel around. Now that the
time is here...we don't want to leave our comfy
home..lol...Dorla
Hi Sleepy Ones,
Some time ago, I reported about the benefits which I have received from
having my upper cervical spine aligned. I received only one reply from
someone who was willing to try. Did anyone try?
Have you read the article in Scientific American on narcolepsy in January
issue? This explains the neurology of narcolepsy and the brain stem. Have
you considered that tractionization and/or compression of this structure
could cause the problem?
I have had great success in treating this condition on many patients, as I
am a chiropractor.
There are many techniques within chiropractic and the method which has
helped me is the NUCCA method. See nucca.org for further information.
As long as my neck is aligned, I do not have even a trace of cataplexy - I
could not laugh out loud for 15 years. I require a normal 7 hours of sleep
and am not any more sleepy than any other middle aged, overweight male who
works long hours.
The chemical approach which is usually recommended is whipping a tired
horse. The answer is mechanical - wake up - get your neck aligned or should
I say get your neck aligned and wake up:) .
Hope this is helpful.
Dwain Ingram, D.C.
Legally, only a licensed physician, usually a dermatologist, can diagnose
rosacea or any other skin condition. This cannot be done over the
internet but you must see a medical doctor.
Brady Barrows
from excessive daytime sleepiness. Constantly I feel a thud of
sleepiness and "blackouts" in my head which is terribly annoying as I
have so much work to do. Feeling tired does not help me at all! Please,
what should I do? I have my exams coming up soon!<<
Hi Sandwoman and all:
Your Email did not get read by me until today and I am really happy to
have read your description of tiredness. I feel a thud and have a
blackness as you do but have never been able to state it in the exact
wording as you did. Blackness is discribed by me as a 'blackout' or
'blanking out'. The thud of EDS is really something. I will be in the
middle of speaking or cleaning, or whatever, and it is indeed a 'thud'.
As far as you exams, I fell asleep during my RN licensure exam. I
continued to fill in while I wasn't actually there and I passed the
exam. God had to have been with me that day.
I found after studying with a group of girls, I would leave and drive
home knowing I did not know a thing. While I was sleeping I had all the
answers to the things I did not feel I knew. During the exam I found I
was answering with confidence the questions I did not know the night
before, before I fell asleep.
If you are on stimulants you can always medicate yourself just before
the exam. That always helped me for classes and exams.
N is surely a 'queer' disorder. We all have our little' weird'
experiences to share with one another.
Good luck with the exams and thanks again for you unique descriptions.
Jean
Where is everyone? It has sure been quiet in here lately. Has everyone but me
gone on vacation? LOL
I am an 18 year old male and struggle with frustrating constant
facial flushing. I have done a lot of research about what skin
condition I might have. My cheeks are usually very dry and are red
almost all the time. They get much redder after my face flares up
from flushing. I do not have any of the acne on my cheeks though.
I've been told that I might have rosacea, but recently told that I
don't have it by another dermatologist. There is another condition
called keratosis pilaris rubra faceii that also describes what I
have. Rosacea also describes a lot of what I have too. I am currently
taking Tetracycline with no results after a couple weeks. My question
is, what skin condition do I have?
I have started a club for people with disabilties, their family and
Hi Bev,
My real name is Vicki R. Majhor (Kohl is my maiden name). My telephone
number at home is 925 828-5051. My cell number is 925 518-0672. My fax # is
925 806-0494. I'd love to introduce you to two other Ns. One lady is Sue
Carella, she's the founder of 2 national n organizations. The other is Carol
West, she's also one of my best friends. We all help each other cope. These
two ladies have saved me. I am sure we can help you too.
Let's get together and have fun, tell jokes, have lunch, and compare funny
stories.
We live close enough that we all could meet. Let's look forward to fun
times. I'm 47f, athletic and a total goof ball.
Regards,
Vicki
Thank you so much!!
Hi all we are back from our vacation....we had a
wonderful time....!!! and it was so good to see ray
there...Ray I loved the pictures and no im not deleting
them....they are great!!!! lol lol <br
back home..but I really didnt want to go!!! We met
some very wonderful people there....What good hearts
they all have I didnt want to leave them...But we will
go back again next..to meet with our newly founded
friends...<br
beautiful...nice words.... Thanks for doing that!!<br
and God Bless all...<br
Dear Theresa
Theresa is my daughter's name, also. How very nice to receive responses
to my e-mail. I sent it some time ago and didn't think I was going to
hear from anyone.
The very main thing to do with this most idiotic affliction is to keep
and maintain at all times A SENSE OF HUMOR!!! It sounds like your'e
young and I know how difficult it is. I have absolutely refused to let
The big N take over completely. I have many, many stories and I try to
keep laughing. I'm 60 now and I was diagnosed finally when I was 35.
Actually, it was a relief to find out that I wasn't slowly going nutso.
I still take classes at the J.C., work,etc. It isn't easy by any means,
but I never stop trying. I drive my husband nuts because when I'm awake
I have to keep busy,busy,busy because as soon as I sit down I'm out. He
is amazingly patient, especially when we didn't know what was wrong
with me. I have three children and five grandchildren. My daughter,
Theresa and two grandchildren live next door and I am very happy with
our arrangement. I have tried just about everything you can think of
and I get very, very, sick and tired of feeling tired all the time more
than the sleeping. Fortunately, the cataplexy isn't as bad as it used
to be. I'm on Desoxyn now. I went thru the Modanfil experiment and it
was horrible. I was a three times as tired. It was an effort to move.
Keep your spirits up and I'll be thinking of you. Sincerely Bev
Someone informed me who requested to be nameless that Glendale
Communications Group, Inc. of Barrington, IL. is owned by Sam Huff.
You can check this out at this url
http://www.cyberdriveillinois.com/cgi-
bin/business_services/corp.s?ID=54918313&CTYPE=01
Sam Huff is the President of the National Rosacea Society of Barrington,
IL.
$288,626 was paid to Glendale Communications Group, Inc, listed as a
contractor by the
National Rosacea Society on the 2001 Form 990 to the Internal Revenue
Service.
You may request a copy of the 2001 Form 990 from the National Rosacea
Society which will
be mailed to you for free by sending an email to this address or using
their toll free number
Contact
phone:
1-888-NO-BLUSH
e-mail:
rosaceas@...
If they do not send you a copy in thirty days the NRS may be in
violation of the law.
Brady Barrows
Hi Many thanks for responding. I would love to talk to you and hear how
you cope with this idiotic affliction we have. I have only met two
others and that was when I went thru the modanfil experiment in La
Jolla. I was living in Oceanside for 3 years and am very glad to be
back up north, again. Modanfil made me more tired than I already am and
I couldn't stay on their program after nine months. It was a terrible
experience. Hope to hear from you soon. Sincerely Bev Young
for most of my life i become incontinent when i laugh really hard or
when i'm scared or get embarrased. could this be a form of cataplexy? i
am 43 and have been doing this since i've been a child. thanks
........theresa
Very nice pics ray, looks like you all had fun.
So did Angela give you that hug from me? :))One of
these days I may get around to posting a picture of me,
one of these days..lol <br
July. Of couse we don't celebrate it here, but I will
be thinking of you and your extra long weekend, and
the fact that its summer over there, and we are in
the middle of a particuarly nastly cold spell,
yesterday it got as low as 14 degrees...celcius of course
:) brrrrr.
May I also suggest that u speak to your professors, though u r undiagnosed at
this time, it may help. N is beginning to get its word out and more and more
folks are aware of it. During my college days I spent a lot of time in the
test centers, there they knew of my EDS and thought nothing of me knocking
out for a quick 15 min. nap then resuming my test. There u have all the time
that u need.....if your teacher so requests it. Go see your counselor and or
the disability team there. I also got help with my note taking for my lecture
courses..... you know the ones that are about 2 hours long, the ones that I
never stayed awake for, though I went every day and sat right up front.
Good Luck,
Christie
"kolare" <tore.kolar-@...
from excessive daytime sleepiness. Constantly I feel a thud of
sleepiness and "blackouts" in my head which is terribly annoying as I
have so much work to do. Feeling tired does not help me at all! Please,
what should I do? I have my exams coming up soon!
I have found that 3 or 4 15 min to 30 min naps during the day help
lesson the sleepy feeling.
Exercise helps me also, untill you can get a sleep test done to find
a treatment that will fit your lifestyle.
It sounds like a no win deal here i know** [what do you mean sleep 4
times a day I dont have time right]*** but its better than taking exams
in a cloud!!!!
loud music or nothing works for me like the cat naps and exercise..
good luck dcp
Hello, everyone...<br
posted a couple of pictures that we took while Jim and
Angela were here. I didn't post all that we took, of
course. That would take too much room and Angela would
probably just go in and delete them when she saw them
anyway......LOL<br
Hi! I just read about the rosacea diet, but if someone could give me
more info on it without my having to buy the book just yet, I would
greatly appreciate it. I started showing symptoms about 7 years ago
and though my condition has improved since then a great deal, I still
don't have as much control over it as I'd like to have. I've heard
of people whose skin has actually pretty much gone back to normal, as
long as they are careful. Any info would be appreciated. Thanks!
Cori
Hi, Dorla, thanks for the greeting.. I ditto your
wishes to everyone for a safe holiday. <br
you and your family also have a safe and fun 4th,
maybe with a little more warmth than you are
descibing... I can't believe it is so cool there. Oh well, my
best to you!<br
thanks
Dear Kat -
I am another list member who usually just reads for tips. I understand what you mean. I also have Rosecea that does not respond to the usual treatements.
I am 48, have had this for 10 + years. 3 years ago I was under a lot of stress and you could not believe how bad I looked. Really. I took photos to show the docs what a full outbreak looked like. One doc had me tested for Lupus because it looks so wierd.
That being said - I am 90% better, and you could hardly tell right now I have it. Here are some suggestions for you:
1 - if you dermatologist isn't beating the bushs to find out what helps, switch.
2 - be sure he tests you for all other possibilities, including it is not Rosecea it is fungal instead.
3 - Despite the above, it is your face and your skin. You will have to work with it to figure out what helps/hurts you!
Here are a couple tips that have helped me:
There is a book called the
Wrinkle Cure by Previconne (your too young to have to read this one). He describes this as a chronic INFLAMMITORY disease. What helps is anything that limits inflamitory reactions. that was my first clue.
Two things in that book made a huge difference - 100 MG of alphalipoic acid (avail in health food stores ) every night. Q10 night cream by Eucerin (sp?) is anti inflamitory (nights creams don't have chemical sunscreens. Use every night. He also recommends - eat lots of salmon and catalope. It does help a bit - Also limit the amount of Suger/refined carbs and alcohol (notice I did not say totaly eliminate. When you are under control you can probably be moderate. Think of this as a "body crisis" you need to get under control)
B12 (1000cm under tounge, available at any drugstore helps me with flushing (I bet this only works if you also suffer migraines, but give it a try). 1 per day - use a whole bottle and see if it helps.
Sunscreen is a must - every day - only I am allergic to chemical sunblocks. Neutrogina and Clinique both make 25+ chemical free block. I had to slowly work up over several weeks so my skin would deal with it.
I worked with a Naturopath to get my stress under control. I see an allergist in a couple weeks because my allergies ABOSLUTELY feed into this. (PS - I take one claritin a day and it really helps)
Now for something new and different - the July 2002 Prevention has an article on Oregon Grape herbal tincuture for Rosecea, ezcema and psoriasis. It helps in about 70% of cases. is pretty slow acting though - takes 3 months to see if it works or not.
I have been using for 2 months and it definately has helped my skin be more resistant to things that upset it.
PS - I belive in whatever work - I also take doxycicline and nystatin when I have a flair up - I probaly use these 3-4 months a year when I am under a lot of stress.
The good news - work hard to get it under control - then get a plan that works for you. These are usually pretty healthy in general, so when you get to my age you'll be in really good shape and have hardly any wrinkles to boot!
Hope something in here is a help.
Kim
Hi. My name is Kat Hummel and I am a 21-year-old college student from
PA. I aquired rosacea right when I turned 21, lucky me. I do not fit
any of the characteristics of a person that usually suffers from this
terrible diease. It has just gotten worse ever since I started seeing
a dermatologist. I have been a member of this club for a while and
have just tried to pick up any hints I could get from the posted
messages. This diease is slowly destroying my life. It came out of
the blue and now I'm 21 and I can't eat what I want, I can't drink
what I want, I have to strictly control my emotions. My face gets so
red and bumpy. I feel so ashamed and unattractive. It makes me anti-
social. I just want to try something that will help instead of making
it worse. So far I've tried tetracycline, metrolotion, saline
solution, amoxacicillin, plexion, and herbacort. I asked my
dematologist about laser surgery, but he said that is only for people
that have red veins showing. Is that true? Can any one tell me some
herbal medicine I can try or any other solution. I would appreicate
any advice. I have somewhat come to terms with the diease, but I
would at least like to get some control on it. Thank-you
Sincerely,
Kat
Everyone have a fun and safe July 4th.. We are
having such unseasonal weather we probably will be
wearing coats or wrapped up in the blanket instead of
sitting on them. Have been going to my grandson's ball
games every night and I take a coat and a blanket and I
usually have to use both to keep warm. Unheard of here in
Iowa for June to be so cool. We have a law that
forbids fireworks except with a permit so we have to go
to a public exhibition to see all our fireworks
..Probaly will want hot chocolate instead of lemonade this
year... Dorla
"beverly young" <bevie-@...
Hi, I live in the bay area and can sometimes travel to Santa Cruz.
Hope to hear from you soon.
you are not alone. E-mail me privately for home personal info.
Bev, there's lots of people who understand you. Hope you are feeling
better.
regards,
v
Hi, everyone,<br
and Jim are here in Denver. I've gotten some good
pictures (she probably won't think they are good...lol)
and I'm running them in for development so I can get
them posted BEFORE they return home. Ang will probably
delete them after she gets back. LOL I guess I could
just post them all again if she does that. Anyway,
I'll let you know as soon as I've put them on
here.<br
Hello Katrin,
The obvious question I have is have you been to the doctor? Your complains about daytime sleepiness and posts of messages here indicates you believe you may have narcolepsy. Narcolepsy is a neurological disorder which has two primary symptoms one of which is EDS. The other symptom is cataplexy which is the sudden loss of muscle tone when you laugh, get angry or express yourself emotionally in hundreds of ways. (At your age of what? 21? 22? cataplexy may not have surfaced yet.) Persons with narcolepsy do not "black out." We do "blank out." By that, I mean that we have a kind of amnesia during what I call a "low alertness phase." "Blanking out" in this manner will most certainly affect learning. As a person with classic narcolepsy, I have learned some techniques to make the brain learn. My suggestion to you at this point is to physically outline your notes with pen in hand or on the computer. Forget high lighting. Don't read, OUTLINE! The back and forth movement
of your eyes when you read is inducive to sleep and so is highlighting. If you believe you have a sleep disorder, inparticularly if you believe you have narcolepsy, get to a neurologist at a sleep disorder center as soon as possible. Tests can determine exactly what your problem is. Meanwhile, avoid staying up late at night. Readjust your sleep habits. (If you find yourself getting up in the middle of the night, take advantage of the wakefulness to get some studying done.)
Inform your academic advisor of your problem immediately. Ask if there is a way you can delay taking exams until you have been to the doctor. If you wish to communicate privately with me, feel free to do so.
Nancy
Kimmy, thank you for those wonderful words. It is
a shame that you did not have the pleasure of
meeting this wonderful man. Chris was something special
in the lives of hundreds and hundreds of people. The
sound of his voice in the chat room as he hassled all
the gals will live with many of us forever. <br
I am reposting this reply because my connection dropped off and I
tink my reply did not get through; apologies if this results in a
double post. Thanks to everyone for helpful suggestions.
Yes, I am certain I was treated with the Candela Vbeam--same lavender
machine shown on their website;first 2 treatments w\o bruises
consistent with their claim this laser minimizes pupura.
Dr. Alarcon's point on prednisone's suppression of immune function is
a good point. I took a four day "tapering dosage and have had no
more in last 48 hours. Hard to say if arnica or my other treatments
have helped. Red/purple color peaked Sunday night (@48 hours), but
is still too vivd to conceal or be seen, so I will spend rest of week
in bed.
Does anyone know where I might get the two enzymes-wobewnzyme or
varidasa --I have called GNC, who do not have them.
Thanks again
Hi!
I'm a college student who for the past year, has suffered from daytime
sleepiness. It is terrible as I have a lot of work to do and I seem to
get tired always when I need that extra energy to keep me going. What
can I do? I don't fall asleep until 3am and wake up at 6.30am. Please
dear readers give me some advice; my exams are in two weeks time!
Thanks :)
Hi!
I'm a hard-working and overstressed undergraduate student suffering from excessive daytime sleepiness. Constantly I feel a thud of sleepiness and "blackouts" in my head which is terribly annoying as I have so much work to do. Feeling tired does not help me at all! Please, what should I do? I have my exams coming up soon!
Thanks in advance,
Sandwoman
In a message dated 08/26/2002 7:47:43 PM Eastern Daylight Time,
barb_rus@... writes:
<<
Any of your sufferers live in Florida???? How do you
handle the high humidity and extreme heat??
Hi, I live in Miami year round so you can imagine the heat and humidity.
Basically in the summer I go from an airconditioned space to an air
conditioned car!!! It's pretty brutal. I do my outdoor stuff in the
early morning. I get up at about 6:30 on the weekends and play tennis from
7 to 9 and garden till about 10. After that I'm inside an air conditioned
space as much as possible! I wear sunscreen everyday!
I've lived here since 1967 and it seems like it's hotter every year!
Take care,
Elena
Hello Linda and Theresa,
Ditto on what Theresa said. I had that real bad in my earlier days.
Then some of it seemed to level out. However about 2-3 years ago I knew
something was wrong in my body because during the period days my N was
so much worse. So finally I went in to have my hormone system checked
out I am in my 40's and never had children.
It was good that I did, I had experienced some bad situations with
those type of doctor visits. Within 2 weeks I was in the hospital
having a total hysterectomy and a bowel reconstruction. They thought I
had ovarian cancer, but got lucky I didn't. And just barely missed
having a colostomy....I also have Crohn"s disease, but it was the
endometeries . I was still having alot of trouble with the N symptoms
were still bad until my doctor finally put me on the progesterone aster
I asked if he wanted to come out on the ledge with me! LOL
southpawcat
Hi Group.
Really there is nothing you can do to speed up the reaction since is
the result of extravasade blood in other words blood out of the blood
vessel, i think you are already doing alot with the vit k, prednisone
etc avoid antiinflamatories like aspirin or any kind, i am confused
are you shure it was the vbeam laser the one you have been treated
because this laser usually does not causes this kind of reaction it
sounds like you were treated with the old pulsed dye, anyway try some
enzimes like wobewnzyme or varidasa thats the only thing i think it
can help you, it is not magic but it will help, and take it easy it
is also important to let your skin repair as normal as possible if
you block all the inflamation you might be blocking also in this case
the possitive results since the inmune system will be the one to
reabsorve the broken blood vessels,I suggest a few days at home,
sleep well, drink lots of water, continue the vit k cream, maybe some
chamomille tea cold direct from the bag 3 or 4 times a day,wobenzyme
or varida