Msunderstood Issue2

Issue 2

This Issue: Ms. Understood Misunderstood MS Understood pg.3

Poll Rants pg.4

Locating Others pg. 5

Welcome to Issue two! The response to issue one has been pretty good so far, but not as great as I’d like to see. So I’m talking 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!

Kristens Story pg.6

Contact Info: MSUnderstood.Newsletter @gmail.com

www.msunderstoodnewsletter.blogspot.com

pg.2

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!?

Ms. Understood o this is issue 2 and we’re 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 in 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 there is one way to kill a mood it’s 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 get to that point. So what do we do about it? Well you could swear off sex forever, but I’m going to guess that’s not going to work for any man in your life. But how do you explain to your man that it’s hard to get in the mood, and even if you get there your hoo-ha might cause problems and you’re 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 working for them, it is because they aren’t 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 the whole deal. As for dealing with a low libido there aren’t 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 don’t necessarily think that counseling will help, its not like you’re not attracted to your partner and you need to rekindle things but rather your body is rejecting the idea of sex. There is also no great way to deal with bladder control. The best option is to make sure you go to the bathroom right before sex. I’m sure there is some drug you can take to help this too, but if you’re like me, you pick and choose 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-conscious 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 shouldn’t be afraid to talk about out lacking sex lives. We are women in our 20s to 30s; there is no reason that our sex lives should be suffering. We have the rest of our lives to have bad sex.

Misunderstood ee the blog for the “spoon” story submitted by Brandi. It was a little too long for the actual newsletter

MS Understood Stress, Violence May Make MS Worse Bullying Makes Viral Infection, Multiple Sclerosis Worse in Mice By 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.

mm…I think I’ll 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 wouldn’t 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 you’re disciplined enough, try to stay away from aspatame, high fructose corn syrup, anything hydrogenated, and pretty much anything else that actually tastes good.

hase I Clinical Trial: Phase II Clinical Trial: determines the safety investigates the effectiveness of of the medication the new medication. Some of the people are given the treatment and others are given a placebo or other medication.

ell duh. Any one of us with MS could have told you that stress or violence can make MS Worse. I’d 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 I’d 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.

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 application 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.

Quick guide to Clinical Trials:

Rant On Effing Emergency Rooms…

POLL What are your thoughts on Having Kids? www.msunderstoodnewsletter.blogspot.com

[email protected]

pOll Results 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%) Only 18 people voted!!!!There are more than 50 on the mailing list!!! VOTE!!!

Other 3 (21%)

Or even hospitals all together. When you get there, 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 all of your info, and it sits right outside your hospital room door that maybe, just maybe, the doctors/nurses or whoever would read your damn 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 why I was there, what my symptoms were, how long I’ve had MS, how long I’ve had these symptoms and so on. So a couple hours into my visit, I’ve repeated the same information about 30 times, which is really 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 shift 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 to know about me and my case but at the same time why do I have to repeat this so many times? Especially because the last time I was at the ER, I had like 20 people coming in and out of my room constantly. I didn’t know who was my doctor, who was my nurse…or who any of the other people were, so it just felt like I was telling my business to everyone who was in there. Thankfully I was there for an optic neuritis and nothing something super embarrassing like explosive diarrhea or something. It was also ridiculous that I sat there for 6 hours waiting for an attending to tell me what I already knew I had. So to those in the ER or short stay wings of hospitals or any where else in the medical field, get your crap together. Read the charts, and make me comfortable with the knowledge that you can actually read and you know what you’re doing. The ER...those are some fun times.

Locating Others

How many people were told they might have Meningitis before they recieved their diagnosis?

Meningococcal Meningitis (cerebrospinal)

What is meningitis? Meningitis is an infection of the coverings around the brain and spinal cord. The infection occurs most often in children, teens, and young adults. Also at risk are older adults and people who have long-term health problems, such as a weakened immune system.

JACKIE!

Who is tired of hearing “My mom’s second cousin’s brother-in-laws wife has MS”? Who is tired of that super distant friend or relative being the only person out there you know who has MS? I Live in Michigan, and I KNOW that there are other 20-30 year olds out there who are in the same or similar boat that I am. The question is, where the hell are they? By law, your doctor or the person who supplies your meds cannot tell you anyone’s contact information, so finding those people can a little difficult. So I’m proposing a trust system. I’m looking for other people with MS, so I’m assuming you are too, we just need a common ground to meet each other. Maybe MS.Understood can help. Send me your email address and your location, and I’ll publish them in the monthly magazine. Yes, it’s 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 isn’t 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. Disclaimer: No I’m not going to sell your email addresses. Yes, they will be published monthly. I am not responsible for 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, I’m not unemployed anymore but I’m still broke.

Teresa, 26 DFW area, TX [email protected]

Eveline ,24 Santa Barbara, CA [email protected]

Jackie, 22 Highland, MI [email protected]

Marsha, 27 Tampa, FL [email protected]

Krystal,20 Deer Park, WA [email protected]

Kristin, 30 Fort Walton Beach, Fl [email protected]

Narimatsu, 27 Karin, 21 from Hawaii Springfield,Ma [email protected] [email protected]

There are two main kinds of meningitis: Viral meningitis is fairly common. It usually does not cause serious illness. In severe cases, it can cause prolonged fever and seizures. Bacterial meningitis is not as common but is very serious. It needs to be treated right away to prevent brain damage and death. The two kinds of meningitis share the same symptoms. It’s very important to see a doctor if you have symptoms, so that he or she can find out which type you have. What are the signs and symptoms of meningitis? High fever, headache, and stiff neck are common symptoms of meningitis in anyone over the age of 2 years. These symptoms can develop over several hours, or they may take 1 to 2 days. Other symptoms may include nausea, vomiting, discomfort looking into bright lights, confusion, and sleepiness. In newborns and small infants, the classic symptoms of fever, headache, and neck stiffness may be absent or difficult to detect, and the infant may only appear slow or inactive, or be irritable, have vomiting, or be feeding poorly. As the disease progresses, patients of any age may have seizures. How is meningitis diagnosed? Lumbar puncture is the most important lab test for meningitis. A sample of fluid is removed from the spine and tested to see if it contains organisms that cause the illness. Your doctor may also order other tests, such as blood tests, a CT scan, or an MRI. Can meningitis be treated? Bacterial meningitis can be treated with a number of effective antibiotics. Appropriate antibiotic treatment of most common types of bacterial meningitis should reduce the risk of dying from meningitis to below 15%, although the risk is higher among the elderly. Is meningitis contagious? Yes, some forms of bacterial meningitis are contagious. The bacteria are spread through the exchange of respiratory and throat secretions (i.e., coughing, kissing). How is it treated? Bacterial meningitis is treated in a hospital. You will get antibiotics. And you will be watched carefully to prevent serious problems such as hearing loss, seizures, or brain damage. But viral meningitis is more common, and most people with this form of the illness get better in about 2 weeks. With mild cases, you may only need home treatment. Home treatment includes drinking lots of fluids and taking medicine for fever and pain

Kristin’s Story You mentioned wanting "our stories", so here is mine:My story. A year ago, I would have NEVER imagined myself having a story. It is amazing how your life can change so fast. Well a short background is called for first. I spent the year 2006 loosing 60 lbs and became very involved with fitness. In early 2007, I started running as well as weight lifting for a fitnesscompetition that I had hoped to enter in April of 2008. On 06/02/07, I ran my 5th 5k for this year. I struggled with the run which was very strange but did finish with a decent time. After the run , I went home and went 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 ended up in the ER. Was treated for dehydration and sent home. Was back in the ER again 2 days later, treated for the same and sent on my way. Finally a few days later, it (vertigo) was bad enough that I was vomiting every 5 minutes and passing out.Was treated again for dehydration and referred to an ENT (Ears Nose and Throat Doctor.) I was able to get in with him some three days later of course. After he watched me attempt to walk into his office, he immediately turned me around and sent me to be admitted into the hospital. After two MRI’s, I was told that I either had MS and was experiencing an “episode” or had been having mini strokes as they found areas of interest on my brain. The next step would be to have a spinal tap that would tell us for sure. I was given steroids and remained in the hospital for 8 days and then sent home on a walker as the vertigo was still causing somewhat of an issue. A week later I returned to my 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 lesions (?) on my brain and you need 5 to meet full “old” criteria of a diagnoses. I was given the option of either Copaxone or Rebif. I chose Copaxone as I hope to marry and have a baby or two in the future. The next nightmare was fighting my insurance for the meds. After about 7-8 weeks I was able to get help through Shared Solutions to get assistance with 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, nor do I give them to myself. Time will change that I am sure. In the meantime, I am learningto accept my new life and hope that one day I will find my niche in the MS world as well my local community. Next, I attended a Support Group recently and the guest speaker did a talk on Getting The Most Out Of Your Dr. Visits. I took notes and thought it might be a good idea to share them with your readers: Verify that your doctor is Board Certified in the field in which he is 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. Start a health history. Make notes of any and all significant family health issues. Maintain a list of all medicines or health supplements you are taking. Maintain a list of minor and significant symptoms or problems that you may experience. Especially with MS, it is important that you tell your doctor about all of your symptoms. MS tends to mimic a lot of other health issues that we tend to write off. It is important to share these problems with your physician, to allow him to make that determination. Stay informed with new treatments and studies. Ask if you are a candidate for these studies. Bring a second set of ears with you to your appointments. This will help in preventing you from missing something. Doctors typically set aside 15minutes for each patient and always seem to be in a rush. It is also a good idea to have a list of questions or concerns that you wish to address with them. Get the most out of your 15 minutes! It is also a great idea to carry around an index card with a list of the current medications, dosages and physicians name and contact numbers. This is definitely a good idea in the case of an emergency. Finally: Remember that you are your best ADVOCATE! No one will ask these questions if you don’t. Final Thought: I am encountering conflicting information in conversations with my doctor as well as when chatting with other MSers like us when it comes to MS versus pregnancy. Seeing that this newsletter is for those who are in the 20-30 year old bracket. I am sure that there are folks out there who have dealt with this topic. I would love to hear from them on what problems, issues, etc that they experienced. Like: Did they have to stop their injections when trying to become pregnant? Did they experience a “remission” during pregnancy? How was their MS effected by delivery and afterwards? Okay, that is all I can think of for now. Thanks again for providing me with this outlet.

Next Issue MSer Tips Send me your tips. How do you get through your day? MSer Rants I’m looking for people who are currently apart of clinical 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 you’ve got