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Thisssue:
s. Understood2
isunderstoodS Understood3
ollants4
ocating Others 5
ristens Story6
ontact Info:
SUnderstood.Newslettergmail.com
Welcome to Issue two! The response to
issue one has been pretty good so far, but
not as great as Id like to see. So Im talk-ing you, yes YOU! Get online respond to
the polls, send me your letters, your info
ANYTHING!!!! I have a vision here people
and it needs you to work!
www.m
sunderstoodnew
sletter.b
logspot.com
Issue 2
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Ms. Understoo
ccording to WebMD, a study shows a 12% decrease in
Cancer Risk for Women Taking Oral Contraceptives. Yahoo
for no babies AND cancer. Since when is the pill a wonder
drug!?
o this is issue 2 and were going to jump right into it. Lets talk about sex baby. Well actually
were going to talk about the problems women with MS face, and give some possible solutions i
attempt to save our sex lives. The number one issue reported is loss of libido. Which is probably
no news to you. The next complaint is vaginal dryness and loss of ability to orgasm. Which if the
is one way to kill a mood its a dry va-jay jay, with a side of no orgasm. To top it all off there is
always that really cool possibility of losing bladder control during your orgasm if you can even g
to that point. So what do we do about it? Well you could swear off sex forever, but Im going to
guess thats not going to work for any man in your life. But how do you explain to your man that
its hard to get in the mood, and even if you get there your hoo-ha might cause problems andyoure afraid that you might pee all over him even if you do get to orgasm. Well you can start by
simply explaining that MS can impair the nerves in your vagina, which then makes it difficult to
respond to sexual stimuli. Or you cannot explain that it, and stock up on your favorite lubricant
and make sure to use a lot of it. In most cases when women report that lubricants are not workin
for them, it is because they arent using enough. Applying lubricant can be a bit of a mood
wrecker but choose between having a wrecked mood for a minute or completely breaking off t
whole deal.
As for dealing with a low libido there arent really any great quick fixes. There are a few drugs you
can take to up your sex drive, or there is always counseling for your relationship. I dont necessa
ily think that counseling will help, its not like youre not attracted to your partner and you need t
rekindle things but rather your body is rejecting the idea of sex. There is also no great way to de
with bladder control. The best option is to make sure you go to the bathroom right before sex.
Im sure there is some drug you can take to help this too, but if youre like me, you pick and choo
your drugs to keep them minimal.
Also its my opinion that the more sex you have, the more sex you want. We get so self-consciou
about our bodies and all of the crazy stuff that could happen or could go wrong that we totally
take yourself out of the mood. If we just let go and let our partners do their job they will be
happier and in the long run hopefully you will too. Also as embarrassing as it is, talk to your
doctor. These are the people we talk to about bladder and bowel incontinence, we shouldnt beafraid to talk about out lacking sex lives. We are women in our 20s to 30s; there is no reason tha
our sex lives should be suffering. We have the rest of our lives to have bad sex.
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Quick guide to Clinical Trials:
hase I Clinical Trial:
determines the safety
of the medication
Phase II Clinical Trial:
investigates the effectiveness of
the new medication. Some of the
people are given the treatment
and others are given a placebo
or other medication.
Phase III Clinical Trial:
determines the potential side
effects of the medication, the
long-term effects and any
complications that may occur.
After Phase III trial, an applica-
tion for FDA approval can be
made.
Phase IV Clinical Trial:
sometimes conducted after FDA
approval in order to determine
effectiveness and long-term
benefits of the drug in a much
larger number of people.
Misunderstoodee the blog for the spoon story submitted by Brandi. It was
a little too long for the actual newsletter
MS UnderstoodStress, Violence May Make MS WorseBullying Makes Viral Infection, Multiple
Sclerosis Worse in MiceBy Daniel J. DeNoon
WebMD Medical News
Aug. 17, 2007 -- Mice with an MS-like disease got
sicker faster after being chased and bitten by
aggressive mouse bullies.
ell duh. Any one of us with MS
could have told you that stress or
violence can make MS Worse. Id
like to know who funded that study?
Seriously, who spend the money on
the mice, the lab time, and all of the
paperwork that went into that study
because Id like to punch them in
the nuts. Why are we spending
money on studies that we already
know the answer to? Mice cannot
speak, MS patients can and will tell
you for free that stress and violence
can cause MS attacks. So thanks a
lot Daniel J DeNoon for wasting
money and telling us what we
already know.
Expert Panel: Aspartame Sweetener Safe
No Cancer, Seizure, Obesity, Birth Defect
Risk Seen in Aspartame Studies
By Daniel J. DeNoon
WebMD Medical News
Reviewed by Louise Chang, MD
Sept. 11, 2007 An expert panel says it's
confident there's no health risk from
aspartame -- the artificial sweetener used in
thousands of food products.
"We conclude aspartame is very safe," panel
coordinator Bernadene Magnuson, PhD,
assistant professor of nutrition and food
science at the University of Maryland, said at
a news conference.
mmI think Ill believe this one when
there is some serious studies proving
this theory. Asparame is the sweetener
found in everything especially diet pop. It
is something that many people out there
are thinking could be a potential trigger
for MS. Which is also yet to be
proven..but it wouldnt surprise me. With
All of the crap we put into our foods, and
then into our bodies these days it would
be logical to think that there some
serious lasting effects that we are not
aware of. So if youre disciplined enough,
try to stay away from aspatame, high
fructose corn syrup, anything hydroge-
nated, and pretty much anything else
that actually tastes good.
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POLL
pOll Results
www.msunderstoodnewsletter.blogspot.com
Rant On
Or even hospitals all together. When you get ther
all of your info goes into a chart, and that chart
follows you around during your whole stay at the
hospital. So you would think that if this chart has aof your info, and it sits right outside your hospital
room door that maybe, just maybe, the
doctors/nurses or whoever would read your dam
chart before coming into check on you. In my
experience this NEVER happens. The last time I
was in the ER, I had probably 10 people ask me wh
I was there, what my symptoms were, how long Iv
had MS, how long Ive had these symptoms and so
on. So a couple hours into my visit, Ive repeated
the same information about 30 times, which isreally obnoxious. Why do I even have a chart if no
one is going to read it!? It seems like a seriously
flawed system if you ask me. The same goes for
any sort of hospital stay. During the last IVSM
session, every time the nurses went through a shi
change, the new nurse would come in and ask me
all the same questions the first nurse asked me. I
suppose its somewhat comforting that they want t
know about me and my case but at the same time
why do I have to repeat this so many times? Espe
cially because the last time I was at the ER, I hadlike 20 people coming in and out of my room
constantly. I didnt know who was my doctor, who
was my nurseor who any of the other people wer
so it just felt like I was telling my business to every
one who was in there. Thankfully I was there for a
optic neuritis and nothing something super embar
rassing like explosive diarrhea or something. It wa
also ridiculous that I sat there for 6 hours waiting
for an attending to tell me what I already knew I ha
So to those in the ER or short stay wings of hospi-
tals or any where else in the medical field, get you
crap together. Read the charts, and make me
comfortable with the knowledge that you can actu
ally read and you know what youre doing. The
ER...those are some fun times.
Effing Emergency Room
What are your thoughts on
Having Kids?
What were your first symptoms at diagnosis?
Optic neuritis
4 (28%)
Numbness in legs
4 (28%)
Numbness in upper body
5 (35%)
Difficulty with Gait
2 (14%)
Other
3 (21%)
Only 18 people
voted!!!!There are
more than 50 on
the mailing list!!!
VOTE!!!
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JACKIE!
Locating Others
Meningococcal Menin
(cerebrosp
What is men
Meningitis is an infection of the coverings around t
and spin
The infection occurs most often in children, tee
young adults. Also at risk are older adults and peo
have long-term health problems, such as a we
immune system.
There are two main kinds of men
Viral meningitis is fairly common. I
does not cause serious illness. In severe case
cause prolonged fever and s
Bacterial meningitis is not as common but is very
It needs to be treated right away to prevent brain
an
The two kinds of meningitis share the same sympt
very important to see a doctor if you have sympt
that he or she can find out which type yo
What are the signs and symptoms of men
High fever, headache, and stiff neck are c
symptoms of meningitis in anyone over the age of
These symptoms can develop over several hours
may take 1 to 2 days. Other symptoms may
nausea, vomiting, discomfort looking into brigh
confusion, and sleepiness. In newborns and smal
the classic symptoms of fever, headache, a
stiffness may be absent or difficult to detect, and th
may only appear slow or inactive, or be irritab
vomiting, or be feeding poorly. As the disease prog
patients of any age may have s
How is meningitis diag
Lumbar puncture is the most important lab
meningitis. A sample of fluid is removed from the sp
tested to see if it contains organisms that cause the
Your doctor may also order other tests, such a
tests, a CT scan, or
Can meningitis be t
Bacterial meningitis can be treated with a nu
effective antibiotics. Appropriate antibiotic treat
most common types of bacterial meningitis should
the risk of dying from meningitis to below 15%, a
the risk is higher among the
Is meningitis cont
Yes, some forms of bacterial meningitis are con
The bacteria are spread through the exch
respiratory and throat secretions (i.e., coughing, k
How is it t
Bacterial meningitis is treated in a hospital. You
antibiotics. And you will be watched carefully to
serious problems such as hearing loss, seizures,
d
But viral meningitis is more common, and most peo
this form of the illness get better in about 2 wee
mild cases, you may only need home treatmen
treatment includes drinking lots of fluids an
medicine for fever a
How many people were told t
might have Meningitis before they recieved the
diagnosis?
Teresa, 26DFW area, TX
Jackie, 22
Highland, MI
Krystal,20Deer Park, WA
Narimatsu, 27
from Hawaii
Eveline ,24Santa Barbara, CA
Marsha, 27
Tampa, FL
Kristin, 30Fort Walton Beach, Fl
Karin, 21
Springfield,Ma
Who is tired of hearing My moms second cousins brother-in-laws wife has MS? Who is tired of that
uper distant friend or relative being the only person out there you know who has MS? I Live in Michigan,
nd I KNOW that there are other 20-30 year olds out there who are in the same or similar boat that I am.
he question is, where the hell are they? By law, your doctor or the person who supplies your meds cannot
ell you anyones contact information, so finding those people can a little difficult. So Im proposing a trust
stem. Im looking for other people with MS, so Im assuming you are too, we just need a common ground
o meet each other. Maybe MS.Understood can help. Send me your email address and your location, and
l publish them in the monthly magazine. Yes, its a little scary publishing your email address to the world,
but it could prove to be beneficial if you meet some cool people. You could always create a spare
hotmail/yahoo/gmail account that isnt your primary for this reason. We have a lot to learn from each
other, so lets get started. Send me your name, age, location and email.
sclaimer: No Im not going to sell your email addresses. Yes, they will be published monthly. I am not responsible
r who contacts you or anything that is said thereafter. I am merely responsible for bringing people in close areas
together. Please don't sue me, Im not unemployed anymore but Im still broke.
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You mentioned wanting "our stories", so here is mine:My story. A year ago, I would have NEVER imagined
having a story. It is amazing how your life can change so fast. Well a short background is called for first. I sp
year 2006 loosing 60 lbs and became very involved with fitness. In early 2007, I started running as well as
lifting for a fitnesscompetition that I had hoped to enter in April of 2008. On 06/02/07, I ran my 5th 5k for thistruggled with the run which was very strange but did finish with a decent time. After the run , I went home an
to bed. (It had been a midnight run.) I lay in bed and the room began to spin. This went on for days until I ende
the ER. Was treated for dehydration and sent home. Was back in the ER again 2 days later, treated for the sam
sent on my way. Finally a few days later, it (vertigo) was bad enough that I was vomiting every 5 minutes and p
out.Was treated again for dehydration and referred to an ENT (Ears Nose and Throat Doctor.) I was able to get
him some three days later of course. After he watched me attempt to walk into his office, he immediately turn
around and sent me to be admitted into the hospital. After two MRIs, I was told that I either had MS and was
encing an episode or had been having mini strokes as they found areas of interest on my brain. The next step
be to have a spinal tap that would tell us for sure. I was given steroids and remained in the hospital for 8 da
then sent home on a walker as the vertigo was still causing somewhat of an issue. A week later I returned
nuero office and told that it was official, that I do have MS. I was told that it was caught early as I only have 5
(?) on my brain and you need 5 to meet full old criteria of a diagnoses. I was given the option of either Copax
Rebif. I chose Copaxone as I hope to marry and have a baby or two in the future. The next nightmare was fightinsurance for the meds. After about 7-8 weeks I was able to get help through Shared Solutions to get assistanc
the meds for the next 10 months. After that, I am not sure what I will do. I have not yet adjusted to the shots, n
give them to myself. Time will change that I am sure. In the meantime, I am learningto accept my new life and
that one day I will find my niche in the MS world as well my local community. Next, I attended a Support
recently and the guest speaker did a talk on Getting The Most Out Of Your Dr. Visits. I took notes and thought it
be a good idea to share them with your readers: Verify that your doctor is Board Certified in the field in whic
seeing you. This is a great idea if it is a doctor for your Ms as well as any other reason you are seeing a doctor.
health history. Make notes of any and all significant family health issues. Maintain a list of all medicines or
supplements you are taking. Maintain a list of minor and significant symptoms or problems that you may expe
Especially with MS, it is important that you tell your doctor about all of your symptoms. MS tends to mimic
other health issues that we tend to write off. It is important to share these problems with your physician, to allo
to make that determination. Stay informed with new treatments and studies. Ask if you are a candidate fo
studies. Bring a second set of ears with you to your appointments. This will help in preventing you from m
something. Doctors typically set aside 15minutes for each patient and always seem to be in a rush. It is also a
idea to have a list of questions or concerns that you wish to address with them. Get the most out of your 15 m
It is also a great idea to carry around an index card with a list of the current medications, dosages and phy
name and contact numbers. This is definitely a good idea in the case of an emergency. Finally: Remember th
are your best ADVOCATE! No one will ask these questions if you
Final Th
I am encountering conflicting information in conversations with my doctor as well as when chatting with
MSers like us when it comes to MS versus pregnancy. Seeing that this newsletter is for those who are in the
year old bracket. I am sure that there are folks out there who have dealt with this topic. I would love to hea
them on what problems, issues, etc that they experienced. Like: Did they have to stop their injections when tr
become pregnant? Did they experience a remission during pregnancy? How was their MS effected by deliveafter
Okay, that is all I can think of for now. Thanks again for providing me with this
KristinsStory
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Next Issue
MSer Tips
Send me your tips.
How do you get through your day?
MSer Rants
Im looking for people who are currently apart of clini-
cal trials that want to tell me about it.
Embarrasing Stories
Also feel free to send me pictures with your entries.
Let people get a face to the story. Or send things
anonymously, make us wonder.
Good MS related books/resources
Anything else youve got
